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UBC Theses and Dissertations

Perspectives on need : respite care services for the elderly and their families Curle, Marjorie Lynne 1988

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P E R S P E C T I V E S ON NEED R E S P I T E CARE S E R V I C E S FOR THE E L D E R L Y AND T H E I R F A M I L I E S BY M A R J O R I E L Y N N E C U R L E B.S.w. T h e U n i v e r s i t y o f M a n i t o b a , 1 9 8 1 A T H E S I S S U B M I T T E D I N P A R T I A L F U L F I L L M E N T OF THE R E Q U I R E M E N T S FOR THE DEGREE OF MASTER OF S O C I A L WORK i n THE F A C U L T Y OF GRADUATE S T U D I E S ( S c h o o l o f S o c i a l W o r k ) We a c c e p t t h i s t h e s i s a s c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE U N I V E R S I T Y OF B R I T I S H C O L U M B I A O c t o b e r , 1 9 8 8 © M a r j o r i e L y n n e C u r i e , 1 9 8 8 S £ In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 DE-6G/81) i i A B S T R A C T R e s p i t e C a r e p r o g r a m s f o r t h e e l d e r l y a n d t h e i r f a m i l i e s a r e b e i n g r e c o g n i z e d a n d d e v e l o p e d w i t h i n L o n g T e r m C a r e s y s t e m s . R e s e a r c h o n t h e s e p r o g r a m s i s s p a r s e a n d f o c u s e d o n o u t c o m e s t u d i e s . V e r y l i t t l e w o r k h a s b e e n p u b l i s h e d t h a t a d d r e s s e s g r o u n d e d t h e o r y b u i l d i n g o r e x p l o r a t o r y n e e d s a s s e s s m e n t s i n t h e d e f i n i t i o n o f n e e d a n d o b j e c t i v e s f o r r e s p i t e c a r e . T h i s e x p l o r a t o r y s t u d y a d d r e s s e s t h e i s s u e o f n e e d f o r r e s p i t e f r o m two p e r s p e c t i v e s . W i t h i n a n u r b a n C a n a d i a n c e n t e r , f o c u s e d i n t e r v i e w s w e r e c o n d u c t e d w i t h a s a m p l e o f f a m i l y c a r e g i v e r s i n h i g h r i s k s i t u a t i o n s . C a s e s c e n a r i o q u e s t i o n n a i r e s w e r e d i s t r i b u t e d a n d f o c u s e d i n t e r v i e w s c o n d u c t e d w i t h Long Term Care case Managers, c o n t e n t a n a l y s i s was used t o i d e n t i f y t h e m e s a n d i s s u e s f r o m a l l d a t a s o u r c e s . T h e t h e m e s a n d c a t e g o r i e s t h a t e m e r g e d f r o m t h e d a t a a r e d i s c u s s e d i n r e l a t i o n t o a s y s t e m s t i m u l a t i o n m o d e l a n d l o c u s o f c o n t r o l p e r s p e c t i v e a s a p p l i e d t o u n d e r s t a n d i n g n e e d a n d e s t a b l i s h i n g p r o g r a m o b j e c t i v e s a n d d e l i v e r y p a t t e r n s . I m p l i c a t i o n s f o r n e e d s a s s e s s m e n t s , p r o g r a m d e s i g n , i n t e r v e n t i o n , a n d f u t u r e r e s e a r c h a r e p r e s e n t e d . i i i T A B L E OF CONTENTS A B S T R A C T i i T A B L E OF CONTENTS i i i L I S T OF M A T R I X E S v i i L I S T OF DIAGRAMS v i i i ACKNOWLEDGEMENTS i x CHAPTER 1 I N T R O D U C T I O N TO THE STUDY 1 B a c k g r o u n d o f R e s p i t e C a r e i n V a n c o u v e r . . 3 R e s e a r c h Q u e s t i o n s . . 4 R e s e a r c h O b j e c t i v e s . . 5 D e f i n i t i o n o f T e r m s . . 6 S u m m a r y . . 7 CHAPTER 2 CURRENT P E R S P E C T I V E S I N THE L I T E R A T U R E 8 T h e R o l e a n d E f f e c t o f F a m i l y C a r e g i v i n g . . 9 1. D i s p e l l i n g t h e M y t h o f A b a n d o n m e n t . . 1 0 2. S t r e s s e s o f C a r e g i v i n g . . 1 4 3. C o n t r o l I s s u e s a s R e l a t e d t o C a r e g i v e r C o p i n g . . 1 9 4. N e e d F o r S u p p o r t . . 2 0 S o c i a l P o l i c y a n d F a m i l y S u p p o r t . . 2 4 1. V a l u e s a n d A s s u m p t i o n s o f t h e P r e s e n t S e r v i c e S y s t e m . . 2 4 2. P o l i c y D e v e l o p m e n t . . 2 7 3. F u t u r e D e v e l o p m e n t s a n d t h e G r o w i n g C a r e G a p . . 3 2 R e s p i t e C a r e S e r v i c e s a s a F a m i l y S u p p o r t . . 3 4 1. O b j e c t i v e s o f R e s p i t e . . 3 6 2. I d e n t i f i e d Need for Respite..37 3. Outcomes of Respite Programs..39 Summary..4 2 CHAPTER 3 METHODOLOGY Rationale for Q u a l i t a t i v e Approach..44 Sample Select ion..46 1. Case Managers..47 2. Family Caregivers..48 Data C o l l e c t i o n Procedures..51 1. Family Caregivers..51 2. Case Managers..52 Data Analysis..54 1. Open Coding..54 2. A x i a l Coding..55 3. Development of Core Categories..56 4. Memo Writing..57 5. I n t e g r a t i v e Diagrams and Charts..57 6. Report Writing..58 Summary..58 CHAPTER 4 PRESENTATION OF RESEARCH FINDINGS Case Manager Questionnaires..59 Case Manager Interviews..60 1. Recognition of Need..62 2. B e n e f i t s of Respite Services..71 3. B a r r i e r s to Meeting Need i n the Informal -System. .76 4. Impediments to Meeting Respite Need in the Formal System..81 5. Need for Change..87 Caregiver Interviews..95 1. Stresses..95 2. Caregivers' Perception of Their Role..101 3. Informal Supports..107 4. Effects of Caregiving on the Family Member..113 5. Background Factors..118 6. Benefits of Formal Services..120 7. Limitations of Formal Services..123 8. Service Needs and Changes..129 Summary..136 CHAPTER 5 INTERPRETATION OF THE FINDINGS, 138 Introduction..138 Conceptualizing Need..139 1. System Stimulation..139 2. Need For Control in Caregiving Relationship..145 Planning Interventions.,150 1. Interventions Based on System Stimulation..151 2. Interventions Based on Locus of Control Issues..158 Barriers to Meeting Need..165 1. Barriers Within the Informal System..165 2. Barriers Within the Formal System..168 3. Barriers to Formal/Informal Complement..173 S u m m a r y . . 1 7 5 CHAPTER 6 SUMMARY AND I M P L I C A T I O N S O v e r v i e w . . 17.7 C o n c l u s i o n s . . 1 8 1 I m p l i c a t i o n s F o r P r o g r a m D e s i g n a n d O b j e c t i v e s . . 1 8 2 I m p l i c a t i o n s f o r S o c i a l Work P r a c t i c e . . 1 8 5 P o l i c y I m p l i c a t i o n s . . 1 8 8 I m p l i c a t i o n s F o r F u r t h e r R e s e a r c h . . 1 9 2 R E F E R E N C E S A P P E N D I X E S A p p e n d i x A . . 2 0 1 A p p e n d i x B . . 2 0 2 A p p e n d i x C . . 2 0 3 A p p e n d i x D..20 5 A p p e n d i x E . . 2 0 6 A p p e n d i x F . . 2 1 1 v i i LIST OF MATRIXES Matrix I Needs Re l a t e d to System S t i m u l a t i o n 144 Matrix II Needs Related to Locus of C o n t r o l 150 Matrix I I I I n t e r v e n t i o n s Based on System Stimulation...157 Matrix IV I n t e r v e n t i o n s Based on Locus of C o n t r o l 164 Matrix V B a r r i e r s to Meeting Need 172 v i i i L I S T OF D I A G R A M S F i g u r e 1 T r a d i t i o n a l , L i n e a r Medical Model 189 Fig u r e 2 System Model and Locus of C o n t r o l 190 ACKNOWLEDGEMENTS I w o u l d l i k e t o t h a n k t h e f a m i l i e s a n d L o n g T e r m C a r e C a s e M a n a g e r s who d e v o t e d b o t h t h e i r t i m e a n d c a n d o r t o t h i s r e s e a r c h p r o j e c t . T h e d i r e c t i o n p r o v i d e d b y N a n c y W a x i e r - M o r r i s o n a n d E l a i n e S t o l a r o f t h e S c h o o l o f S o c i a l Work was i n v a l u a b l e i n f o c u s i n g my e f f o r t s a n d m a i n t a i n i n g a c l e a r v i s i o n o f my p u r p o s e i n d o i n g t h i s r e s e a r c h . I s p e c i a l a p p r e c i a t i o n i s e x t e n d e d t o M a x i n e D a v i s w h o s e p r o f e s s i o n a l a d v i c e , s u p p o r t a n d f r i e n d s h i p h e l p e d s m o o t h t h e r o u g h s p o t s i n t h i s e x p e r i e n c e a n d made t h i s s t u d y a v e r y r e w a r d i n g p e r s o n a l a n d p r o f e s s i o n a l e n d e a v o r . 1 CHAPTER 1 INTRODUCTION TO THE STUDY I t i s estimated t h a t by the year 2021, f i v e m i l l i o n Canadians w i l l be over the age of s i x t y f i v e . The g r e a t e s t growth p r o p o r t i o n a t e l y , w i l l be of the o l d o l d , those over 80. The 1978-79 h e a l t h survey r e p o r t e d t h a t 86% of e l d e r l y persons s u f f e r from at l e a s t one h e a l t h problem which i s u s u a l l y a c h r o n i c c o n d i t i o n . (Government of Canada, 1983) At the same time t h a t the p o p u l a t i o n i s aging, the e l d e r l y continue to remain c l o s e to t h e i r f a m i l i e s . The 1981 census re p o r t e d that 2/3 of a l l e l d e r l y l i v e with a r e l a t i v e (Government of Canada, 1983). I t i s assumed that the growth of the e l d e r l y p o p u l a t i o n w i l l c r e a t e i n c r e a s e d h e a l t h and care needs i n the f u t u r e l e a v i n g both f a m i l i e s and government wondering where and how these growing needs w i l l be met. In the area of h e a l t h care there has been a s h i f t i n p o l i c y and emphasis towards the p r o v i s i o n of community based s e r v i c e s and supports i n response to changing demographics ( C h a p p e l l , S t r a i n & B l a n d f o r d , 1986; Government of Canada, 1982). Faced with i n c r e a s i n g needs and f i n a n c i a l c o n s t r a i n t s , p o l i c y makers are re-examining the r o l e of r e s i d e n t i a l care f o r the aged. Such care i s expensive and serves o n l y a smal l percentage of the p o p u l a t i o n , making i t a prime t a r g e t f o r p o l i c y d i s c u s s i o n s ( A l l e n , 1983). The growing r e a l i z a t i o n t h at f a m i l i e s continue to be i n v o l v e d i n the care of the e l d e r l y and are e f f e c t i v e i n meeting many of the care needs of t h i s aging p o p u l a t i o n has l e d 2 to attempts to provide support and encouragement f o r f a m i l y c a r e g i v i n g . R e s p i t e care s e r v i c e s r e f e r to supports t h a t are designed to meet the needs of f a m i l y c a r e g i v e r s by p r o v i d i n g some form of r e s t or r e l i e f f o r these c a r e g i v e r s . Such programs e x i s t i n most pr o v i n c e s but vary c o n s i d e r a b l y i n terms of t h e i r form and a v a i l a b i l i t y . Respite care programs have been e s t a b l i s h e d on the b a s i s of assumptions t h a t they w i l l provide b e n e f i t s to f a m i l i e s and c o s t s a v i n g to governments. The s e r v i c e i s o f t e n j u s t i f i e d by r e f e r r i n g to i t s p o t e n t i a l f o r d e l a y i n g i n s t i t u t i o n a l i z a t i o n (Chappell et a l . , 1986). However, i n Canada there has been l i t t l e r e s e a r c h on whether r e s p i t e does i n f a c t meet the needs of e i t h e r i n f o r m a l or formal care systems. Sc h a r l a c h and F r e n z e l (1986) qu e s t i o n how r e s e a r c h e r s should measure b e n e f i t s of r e s p i t e s e r v i c e s . Is the focus to be c o s t e f f e c t i v e n e s s , a r e d u c t i o n i n c a r e g i v e r burden, or i n c r e a s e d q u a l i t y of care f o r the c l i e n t ? The f o r c e of c o s t r e s t r a i n t s and l i m i t e d s t a t e resources has i n c r e a s e d the demand for a c c o u n t a b i l i t y of s e r v i c e s . T h i s a c c o u n t a b i l i t y has tended to focus on c o s t / b e n e f i t s analyses (Auerbach & Gerber, 1976). E v a l u a t i o n s of community based s e r v i c e s have shown mixed r e s u l t s to date (Chappell et a l . , 1986). Chappell and a s s o c i a t e s (1986) s p e c u l a t e t h a t community and f a m i l y support s e r v i c e s may operate on the b a s i s of erroneous assumptions about community needs and how these needs should be met. The f i r s t s tep i n the establishment of an e f f e c t i v e and 3 adequate s e r v i c e i s the thorough r e s e a r c h of needs and c a r e f u l e stablishment of program o b j e c t i v e s ( A l l e n , 1983). In the case of r e s p i t e care, these steps have been overlooked. Before an e v a l u a t i o n of the e f f e c t i v e n e s s of r e s p i t e care can be s u c c e s s f u l l y completed, both needs and o b j e c t i v e s must be c l e a r l y c o n c e p t u a l i z e d . Background of R e s p i t e Care i n Vancouver In Vancouver, the Long Term Care Program i s a d m i n i s t e r e d through the Vancouver Health Department, Continuing Care Program. The s e r v i c e s a v a i l a b l e through t h i s program i n c l u d e v a r i o u s home supports, a d u l t day care, and r e s i d e n t i a l c a r e . Respite care s e r v i c e s i n Vancouver i n c l u d e e i g h t i n s t i t u t i o n a l r e s p i t e beds a v a i l a b l e i n f a c i l i t i e s at i n t ermediate and extended care l e v e l s . The Long Term Care P o l i c y Manual i n c l u d e s the use of companion or l i v e - i n homemakers as another type of a v a i l a b l e r e s p i t e s e r v i c e . The s t a t e d purpose of t h i s s e r v i c e i s to provide r e s p i t e care on a planned b a s i s f o r v a c a t i o n or temporary r e l i e f . While s p e c i f i c g u i d e l i n e s and d e f i n i t i o n s r e f e r to i n s t i t u t i o n a l s e r v i c e s as r e s p i t e , i t i s acknowledged t h a t a d u l t day care and some homemaker s e r v i c e s are a l s o used fo r more r e g u l a r and l e s s formal r e s p i t e . The goals of r e s p i t e as o u t l i n e d i n the p o l i c y manual in c l u d e s u p p o r t i n g the c a r e g i v e r i n m a i n t a i n i n g the c l i e n t at home, a v o i d i n g unnecessary or premature r e s i d e n t i a l care and 4 p r e v e n t i n g i n a p p r o p r i a t e a c u t e c a r e a d m i s s i o n s . The C o n t i n u i n g C a r e P r o g r a m h a s e x p r e s s e d a n i n t e r e s t i n e s t a b l i s h i n g m o r e e f f e c t i v e u t i l i z a t i o n o f r e s p i t e c a r e r e s o u r c e s . T h e R e s p i t e S e r v i c e P r o j e c t u n d e r t a k e n i n 1 9 8 5 d e s c r i b e d t h e s t r u c t u r e a n d o p e r a t i o n o f e x i s t i n g r e s p i t e s e r v i c e s i n t h e c i t y , i d e n t i f i e d a d m i n i s t r a t i v e d i f f i c u l t i e s i n p r o v i d i n g r e s p i t e c a r e , d e t a i l e d c o s t a n d f u n d i n g i s s u e s a n d s u g g e s t e d d a t a c o l l e c t i o n t e c h n i q u e s f o r t r a c k i n g u t i l i z a t i o n o f r e s p i t e c a r e b e d s . T h i s w o r k f o c u s e d o n t h e c u r r e n t a p p r o a c h t o r e s p i t e a n d d i d n o t e x a m i n e t h e d e f i n i t i o n o f n e e d o r p r o g r a m o b j e c t i v e s n o r d i d i t a d d r e s s t h e p o s s i b i l i t y o f a b r o a d e r r a n g e o f p r o g r a m a l t e r n a t i v e s . R e s e a r c h Q u e s t i o n s I n t h e r e p o r t p r e p a r e d b y t h e R e s p i t e S e r v i c e P r o j e c t i n 1 9 8 5 c o n c e r n s w e r e e x p r e s s e d a b o u t w h a t a p p e a r e d t o be t h e u n d e r u t i 1 i z a t i o n o f t h e r e s p i t e p r o g r a m . T h i s o b s e r v a t i o n was a t t r i b u t e d t o a l a c k o f k n o w l e d g e b y f a m i l i e s , i n s u f f i c i e n t o r i n a p p r o p r i a t e r e s p i t e r e s o u r c e s a n d t h e r e f u s a l o f s e r v i c e s b y c l i e n t s a n d t h e i r f a m i l i e s . A s s u m p t i o n s a b o u t n e e d o r t h e s t r u c t u r e o f t h e p r o g r a m w e r e n o t q u e s t i o n e d . T h e q u e s t i o n s t h a t s h o u l d be r a i s e d h e r e i n r e s p o n s e t o t h i s u n d e r u t i 1 i z a t i o n a r e , 1) w h y a r e f a m i l i e s n o t a c c e s s i n g s e r v i c e a n d 2) why a r e t h e y n o t f i n d i n g t h e s e r v i c e a p p r o p r i a t e . T h e i s s u e o f n e e d i s t h e c e n t r a l s t a r t i n g p o i n t i n a n y e v a l u a t i o n o f a r e s p i t e c a r e p r o g r a m . A l l e n ( 1 9 8 3 ) , i n h e r 5 c o m p r e h e n s i v e s t u d y a n d e v a l u a t i o n o f r e s p i t e s e r v i c e s i n B r i t a i n , f o u n d t h a t t h e p e r c e p t i o n o f n e e d a n d c r i t e r i a u s e d t o e v a l u a t e e f f e c t i v e n e s s v a r i e d a c c o r d i n g t o o n e ' s p o s i t i o n i n t h e p r o c e s s . D o b e l s t e i n a n d J o h n s o n ( 1 9 8 5 ) a l s o s t r o n g l y b e l i e v e t h a t p o l i c y o u t c o m e s v a r y d e p e n d i n g o n w h e t h e r p o l i c y d e c i s i o n m a k e r s , p r o f e s s i o n a l p e r s o n s o r c o n s u m e r s d e f i n e t h e i s s u e s . T h e i m p o r t a n c e o f a d d r e s s i n g n e e d a n d o b j e c t i v e s f r o m a v a r i e t y o f v i e w p o i n t s a s a b e g i n n i n g p o i n t i n p r o g r a m e v a l u a t i o n h a s l e d t o t h e f o r m u l a t i o n o f t h e f o l l o w i n g r e s e a r c h q u e s t i o n s . 1. W hat i s t h e d e f i n i t i o n o f n e e d f o r r e s p i t e s e r v i c e s f r o m t h e p e r s p e c t i v e o f L o n g T e r m C a r e C a s e M a n a g e r s ? 2. What i s t h e d e f i n i t i o n o f n e e d f o r r e s p i t e f r o m t h e p e r s p e c t i v e o f t h e c a r e g i v e r ? 3. Do t h e s e p e r c e p t i o n s d i f f e r ? I f s o , i n w h a t w a y ? 4. Do e i t h e r o f t h e s e g r o u p s f e e l t h a t t h e n e e d s t h e y h a v e i d e n t i f i e d a r e b e i n g m e t t h r o u g h t h e r e s p i t e c a r e p r o g r a m t h a t i s c u r r e n t l y a v a i l a b l e ? R e s e a r c h O b j e c t i v e s N e e d s a r e o f t e n c o m p l e x a n d d i f f i c u l t t o d e f i n e a n d c o n c e p t u a l i z e . I n a n a t t e m p t t o a n s w e r t h e q u e s t i o n s i d e n t i f i e d a b o v e , i t i s h o p e d t h a t t h e f o l l o w i n g o b j e c t i v e s w i l l b e a c h i e v e d . 1. D e v e l o p a b e g i n n i n g c o n c e p t u a l i z a t i o n o f w h a t c o n s t i t u t e s n e e d f r o m t h e v i e w p o i n t s o f p r o g r a m g a t e k e e p e r s ( c a s e m a n a g e r s ) a n d c o n s u m e r s ( c a r e g i v e r s ) . 6 2. I d e n t i f y the n a t u r e of s e r v i c e s t h a t each groups b e l i e v e s w i l l be e f f e c t i v e i n a d d r e s s i n g the needs as d e f i n e d i n the f i r s t o b j e c t i v e . 3. P r o v i d e the C o n t i n u i n g Care Program w i t h o b s e r v a t i o n s and recommendations r e g a r d i n g the s t r e n g t h s and p o t e n t i a l a r e a s f o r change i n the e x i s t i n g program. D e f i n i t i o n of Terms Long Term Care Program (LTC): p r o v i n c i a l h e a l t h program p r o v i d i n g community s u p p o r t s f o r c h r o n i c a l l y i l l or d i s a b l e d p e r s o n s . R e s p i t e Care ( S e r v i c e ) : any f o r m a l s u p p o r t t h a t i s seen t o p r o v i d e r e l i e f t o the p r i m a r y c a r e g i v e r . F a m i l y C a r e g i v e r ( C a r e r ) : f a m i l y member, u s u a l l y r e s i d i n g w i t h the c l i e n t , who assumes p r i m a r y r e s p o n s i b i l i t y f o r meeting the p h y s i c a l , s o c i a l and/or e m o t i o n a l needs of the c l i e n t . C l i e n t or Care R e c e i v e r : e l d e r l y f a m i l y member who i s a s s e s s e d and i n r e c e i p t of s e r v i c e s from the Long Term Care Program. Formal Care S u p p o r t s : s e r v i c e s and r e s o u r c e s a v a i l a b l e t h r o u g h government sponsored a g e n c i e s . I n f o r m a l Care S u p p o r t s : f a m i l y , f r i e n d s and n e i g h b o r s i n v o l v e d i n the p r o v i s i o n of c a r e and r e s o u r c e s w i t h o u t f i n a n c i a l compensat i o n . Need: l a c k of r e s o u r c e s , a b i l i t i e s or o p p o r t u n i t i e s t o meet p h y s i c a l , s o c i a l or e m o t i o n a l p o t e n t i a l : 7 S u m m a r y T h i s c h a p t e r h a s p r o v i d e d a n i n t r o d u c t i o n t o t h i s r e s e a r c h p r o j e c t b y i d e n t i f y i n g p o p u l a r c o n c e r n w i t h r e s p i t e c a r e s e r v i c e s , t h e l a c k o f r e s e a r c h i n t h e a r e a a n d t h e i m p o r t a n c e o f b e g i n n i n g p r o g r a m e v a l u a t i o n s w i t h a w e l l g r o u n d e d u n d e r s t a n d i n g o f n e e d a n d p r o g r a m o b j e c t i v e s . T h e p u r p o s e o f t h i s s t u d y i s t o e s t a b l i s h a n u n d e r s t a n d i n g o f n e e d s f r o m m o r e t h a n o n e p e r s p e c t i v e i n t h e h e a l t h c a r e s y s t e m a n d t o g e n e r a t e h y p o t h e s e s t h a t c o n t r i b u t e t o t h e e s t a b l i s h m e n t o f p r o g r a m o b j e c t i v e s a n d s e r v i c e d e s i g n s . 8 CHAPTER 2 CURRENT PERSPECTIVES IN THE LITERATURE This chapter reviews the l i t e r a t u r e r e l a t e d to the r o l e of f a m i l y c a r e g i v e r s i n aging f a m i l i e s and the type of help or support t h a t i s a v a i l a b l e through formal care s e r v i c e s . The chapter i s organized i n t o three s e c t i o n s . 1) The f i r s t area d i s c u s s e d i s the type of involvement that f a m i l i e s have i n p r o v i d i n g care f o r aged i n f i r m persons, the s t r e n g t h s and l i m i t a t i o n s of f a m i l y r e s o u r c e s , and the e f f e c t s t h i s involvement has on the i n d i v i d u a l and f a m i l y system. 2) The second issue addressed i s the r o l e of the formal care system i n p r o v i d i n g care f o r aged persons and support f o r c a r e g i v e r s . The i d e o l o g i e s and values behind the present system of s e r v i c e s are examined as they r e l a t e to i n s t i t u t i o n a l and community based care. The p o t e n t i a l f o r the development of a complementary r e l a t i o n s h i p between formal and i n f o r m a l care networks i s addressed along with b a r r i e r s such development faces w i t h i n the s t r u c t u r e of present formal s e r v i c e s . 3) T h i s chapter ends with a d i s c u s s i o n of r e s e a r c h p e r t a i n i n g to r e s p i t e care s e r v i c e s i n p a r t i c u l a r . Such s e r v i c e s focus on p r o v i d i n g support and l i n k a g e between formal and i n f o r m a l networks of support are the focus of t h i s r e s e a r c h p r o j e c t . Western s o c i e t i e s are aging and i t i s estimated t h a t by the year 2001, 12% of the Canadian p o p u l a t i o n with be over the age of 65 (Novak, 1985), T h i s aging of the p o p u l a t i o n b r i n g s with i t i n c r e a s i n g l e v e l s of c h r o n i c i l l n e s s and d i s a b i l i t y (Auerbach & Lewis, 1976). These trends have c r e a t e d f e a r s of r i s i n g and unmanageable h e a l t h care c o s t s (Evans, 1985). Despite the impression t h a t formal h e a l t h s e r v i c e s are being burdened with the care needs of e l d e r l y persons, s t u d i e s have demonstrated that 80% of the care that e l d e r l y persons r e c e i v e comes from in f o r m a l sources (Chappell et a l . , 1986). In Canada 74% of e l d e r l y persons l i v e with a r e l a t i v e (Chappell et a l . , 1986) and i t i s estimated that twice as many e l d e r l y i n the community are as impaired as those a l r e a d y i n i n s t i t u t i o n s (Shanas, 1979b). Given the p o t e n t i a l f o r h e a l t h care needs to in c r e a s e i n the f u t u r e and the a l r e a d y heavy involvement of f a m i l i e s i n the p r o v i s i o n of care, i t . i s important to look at the c h a r a c t e r i s t i c s of f a m i l i e s t h a t provide care and the ways i n which formal s e r v i c e s become i n v o l v e d and support the e x t e n s i v e care provided by i n f o r m a l networks. The Role and E f f e c t of Family C a r e g i v i n g It has g e n e r a l l y been seen as d e s i r a b l e t h a t care f o r the e l d e r l y be provided by f a m i l y and i n f o r m a l networks. The f a m i l y i s b e l i e v e d to provide i n d i v i d u a l i z e d care t h a t i n c l u d e s warmth and commitment (Chappell et a l . , 1986; Government of Canada, 1982) while being based on a f f e c t i o n , duty and r e s p e c t (Litwak, 1985). The N a t u r a l Supports Program of New York (1981) s t a t e d , "Natural support systems are held to be more d e s i r a b l e than formal support systems because the n a t u r a l system i s more 10 f i n e l y t u n e d t o t h e v a r i a t i o n s i n human n e e d , i s l e s s c o s t l y t o s o c i e t y , a n d b u i l d s t h e k i n d o f f a m i l y a n d n e i g h b o r l y s t r e n g t h t h a t i s t h o u g h t t o be c o n d u c i v e t o a m o r e humane s o c i e t y . " ( p . i i ) 1. D i s p e l l i n g t h e M y t h o f A b a n d o n m e n t : F o r many y e a r s , a m y t h o f a b a n d o n m e n t h a s p e r s i s t e d t h a t h a s l e d u s t o b e l i e v e t h a t i n a n i n d u s t r i a l i z e d a n d m o b i l e s o c i e t y , f a m i l i e s a r e no l o n g e r p r o v i d i n g c a r e f o r t h e i r o l d e r r e l a t i v e s ( B r o d y , 1 9 8 5 ) . E x t e n s i v e r e s e a r c h h a s b e e n d o n e t o d i s p e l t h i s m y t h . F o r m a n y o f t h e e l d e r l y , f a m i l y s u p p o r t r e f e r s t o t h e i r e l d e r l y s p o u s e . F o r t h e o l d o l d , e l d e r l y c h i l d r e n may be t h e s o u r c e o f f a m i l y s u p p o r t s . F o r o t h e r s , f a m i l y i s some c o m b i n a t i o n o f p e e r a n d i n t e r g e n e r a t i o n a l c o n n e c t i o n s . T h e l i t e r a t u r e i s n o t a l w a y s c l e a r o n t h e d e f i n i t i o n o f f a m i l y . W h i l e m u c h r e s e a r c h h a s f o c u s e d o n i n t e r g e n e r a t i o n a l s u p p o r t p a t t e r n s b e t w e e n c h i l d r e n a n d a g i n g p a r e n t s , s p o u s e s a n d same g e n e r t i o n s u p p o r t s a r e a l s o a s i g n i f i g a n t s o u r c e o f c a r e . R e s e a r a c h t h a t d i s c r e d i t s t h i s m y t h o f a b a n d o n m e n t b y f a m i l i e s i n c l u d e s a s t u d y b y A r l i n g a n d M c A u l e y ( i n Q u i n n a n d H u g h s t o n , 1 9 8 4 ) w h e r e i t w a s f o u n d t h a t f a m i l i e s w e r e t h e m a j o r s o u r c e o f c a r e f o r e l d e r l y p e r s o n s . W a r d , S h e r m a n a n d La ' G o r y ( 1 9 8 4 ) d i s c o v e r e d m o s t o f t h e e l d e r l y i n t h e i r s t u d y h a d s t r o n g i n f o r m a l t i e s a n d t h a t f a m i l y w e r e t h e f i r s t a v e n u e o f s u p p o r t t o be s o u g h t o u t w h e n i n n e e d . T h e e l d e r l y c o n t i n u e t o u s e t h e i r f a m i l i e s a s t h e i r p r i m a r y s u p p o r t n e t w o r k a n d t u r n t o f o r m a l s e r v i c e s o n l y w h e n f a m i l y r e s o u r c e s h a v e b e e n e x h a u s t e d o r a r e n o t a v a i l a b l e ( C h a p p e l l , 1 9 8 5 ; S h a n a s , 1 9 7 9 b ) . F o r t h o s e e l d e r l y who h a v e f a m i l y s u p p o r t , t h e c h a n c e o f i n s t i t u t i o n a l i z a t i o n i s s i g n i f i c a n t l y l o w e r t h a n t h o s e who d o n o t h a v e a c c e s s t o t h i s t y p e o f s u p p o r t n e t w o r k ( G i b s o n i n N u s b e r g , 1 9 8 4 ; M a s c i o c c h i , T h o m a s & M o e l l e r i n Q u i n n a n d H u g h s t o n , 1 9 8 4 ; S h a n a s , 1 9 7 9 a ) . I t i s t h e a v a i l a b i l i t y o f i n f o r m a l s u p p o r t , m o r e t h a n t h e a c t u a l c a r e n e e d s , t h a t d e t e r m i n e s t h e l i k e l i h o o d o f i n s t i t u t i o n a l i z a t i o n ( B a d e r , 1 9 8 5 ) . W h i l e some s t u d i e s h a v e f o c u s e d o n q u a n t i t a t i v e m e a s u r e s o f c o n t a c t b e t w e e n f a m i l y m e m b e r s , t h e r e h a s a l s o b e e n d i s c u s s i o n i n t h e l i t e r a t u r e o f t h e q u a l i t y a n d c o n t e n t o f t h e s e c o n t a c t s . T h e e l d e r l y a r e a v e r y h e t e r o g e n e o u s g r o u p a n d t h e r e i s g r e a t v a r i a t i o n i n t h e i r h i s t o r i e s , s t r e n g t h s , a n d n e e d s ( N e u g a r t e n , 1 9 8 2 ) . A u t h o r s h a v e s u g g e s t e d t h a t f a m i l i e s a r e b e t t e r a b l e t o r e s p o n d t o t h e i d i o s y n c r a t i c n e e d s o f t h e e l d e r l y d u e t o t h e i r i n t i m a t e k n o w l e d g e o f t h e p e r s o n a n d t h e i r a b i l i t y t o p r o v i d e f r e q u e n t a n d f l e x i b l e s u p p o r t ( S h a n a s & S u s s m a n , 1 9 7 7 ) . E u g e n e L i t w a k ( 1 9 8 5 ) h a s s u g g e s t e d t h a t f a m i l i e s a r e b e s t s u i t e d t o n o n - u n i f o r m t a s k s s u c h a s e m o t i o n a l a n d s o c i a l s u p p o r t . T e c h n i c a l o r i n s t r u m e n t a l a s s i s t a n c e s u c h a s h o u s e w o r k o r m e d i c a l s u p e r v i s i o n i s b e t t e r s u i t e d t o t h e f o r m a l o r g a n i z a t i o n o f b u r e a u c r a t i c s e r v i c e s . Among t h e s t r e n g t h s o f f a m i l y s u p p o r t i s i t s a b i l i t y t o p r o m o t e a s e n s e o f p e r s o n a l m e a n i n g , i d e n t i t y , s e c u r i t y , l o v e , a n d c a r i n g f o r t h e e l d e r l y p e r s o n ( D o b e l s t e i n , A n d r e w & J o h n s o n , 12 1 9 8 5 ) . B r o d y , J o h n s o n a n d F u l c o m e r ( 1 9 8 4 ) i n t h e i r s t u d y o f t h e n o r m a t i v e a s p e c t s o f a g i n g p a r e n t a n d a d u l t c h i l d r e l a t i o n s h i p s f o u n d a s t r o n g c o m m i t m e n t t o c a r e g i v i n g e s p e c i a l l y i n r e s p e c t t o t h e r o l e o f p r o v i d i n g e m o t i o n a l s u p p o r t . T h e f a m i l y c o n t i n u e s t o be t h e f i r s t r e s o u r c e f o r e m o t i o n a l a n d s o c i a l s u p p o r t , c r i s i s i n t e r v e n t i o n a n d b u r e a u c r a t i c l i n k a g e s ( S h a n a s , 1 9 7 9 a ) . I t i s a s o u r c e o f s e c u r i t y . T h e f a m i l y i s a b l e t o r e p l a c e l o s t r o l e s f o r t h e e l d e r l y p e r s o n a n d p r o v i d e a c o n t e x t w h e r e o l d e r p e o p l e c a n c o n t i n u e t o e x p e r i e n c e a s e n s e o f c o m p e t e n c y a n d i n f l u e n c e o v e r t h e i r e n v i r o n m e n t ( K u y p e r s & B e n g s t o n i n Q u i n n & H u g h s t o n , 1 9 8 4 ) . A t a p e r i o d o f l i f e w h e n r o l e s a n d r e s p o n s i b i l i t i e s a r e l e s s e n i n g , t h e f a m i l y i s a n a r e n a w h e r e t h e i n d i v i d u a l c a n c o n t i n u e t o f u n c t i o n a s a n i n t e g r a l member o f s o c i e t y . L o c u s o f c o n t r o l h a s b e e n d e m o n s t r a t e d t o be i m p o r t a n t t o t h e e l d e r l y p e r s o n ' s s e n s e o f w e l l - b e i n g ( B r o w n & G r a n i c k , 1 9 8 3 ; G u a r n e r a & W i l l i a n s , 1 9 8 7 ) . E l d e r l y p e r s o n s o f t e n h a v e a d e g r e e o f c o n t r o l o v e r t h e i r r e l a t i o n s h i p w i t h t h e i r f a m i l i e s t h a t i s i m p o s s i b l e t o d u p l i c a t e w i t h f o r m a l a g e n c i e s ( K i v n i c k i n Q u i n n & H u g h s t o n , 1 9 8 4 ) . New t e r m s a r e e n t e r i n g t h e j a r g o n a s s o c i a t e d w i t h e l d e r l y a n d m u l t i g e n e r a t i o n a l f a m i l i e s . P h r a s e s s u c h a s ^ m o d i f i e d e x t e n d e d f a m i l y ' a n d * i n t i m a c y - a t - a - d i s t a n c e ' a r e now common i n t h e l i t e r a t u r e d e s c r i b i n g f a m i l y r o l e s a n d s t r u c t u r e ( G o v e r n m e n t o f C a n a d a , 1 9 8 2 ) . F a m i l i e s a r e t h e m a j o r t i e b e t w e e n t h e e l d e r l y a n d t h e c o m m u n i t y . A l t h o u g h t h e y may be d i s t a n t , t h e e l d e r l y a r e n o t i s o l a t e d f r o m t h e i r f a m i l i e s ( S h a n a s , 1 9 7 9 b ) . T h e a s s u m p t i o n b y t h e s t a t e o f r e s p o n s i b i l i t y f o r e c o n o m i c a n d some i n s t r u m e n t a l s u p p o r t h a s made i t p o s s i b l e f o r f a m i l i e s t o d e v e l o p m o r e f u n c t i o n a l r e l a t i o n s h i p s t h a t f o c u s o n t h e p r o v i s i o n o f s o c i a l a n d e m o t i o n a l s u p p o r t ( A n d e r s o n i n S h a n a s & S u s s m a n , 1 9 7 7 ) . T h e s e s e r v i c e s f r e e f a m i l i e s f r o m i m m e d i a t e s u r v i v a l i s s u e s a n d p r o v i d e a n o p p o r t u n i t y f o r t h e m t o d e v e l o p r o l e s a s l i a i s o n s , l i n k i n g o l d e r g e n e r a t i o n s a n d t h e b u r e a u c r a t i c m a z e o f f o r m a l s e r v i c e s ( S h a n a s & S u s s m a n , 1 9 7 7 ) . I n t h i s w a y t h e f a m i l y i s a b l e t o c o m p l e m e n t s t a t e f u n c t i o n s w i t h a f f e c t i v e a n d i d i o s y n c r a t i c c o n t a c t s . T h e c o n t i n u e d i n v o l v e m e n t o f f a m i l i e s i n t h e c a r e o f t h e e l d e r l y n e e d s t o be e x a m i n e d i n t h e c o n t e x t o f c h a n g i n g d e m o g r a p h i c s a n d f a m i l y t r e n d s . T h e a b s o l u t e n u m b e r a n d p r o p o r t i o n o f t h e e l d e r l y i n t h e p o p u l a t i o n i s i n c r e a s i n g e s p e c i a l l y a m o n g s t t h e o l d o l d , t h o s e o v e r e i g h t y ( F a c t B o o k o n A g i n g , 1 9 8 3 ) . W h i l e t h e f a m i l y i s s e e n t o be a n e f f e c t i v e p l a c e t o m e e t m a n y o f t h e n e e d s o f t h i s g r o w i n g p o p u l a t i o n , t h e r e a r e l i m i t a t i o n s t o f a m i l y r e s o u r c e s . T h e r a r i t y o f m u l t i g e n e r a t i o n a l f a m i l i e s , d e c r e a s i n g f a m i l y s i z e , g e o g r a p h i c m o b i l i t y o f n u c l e a r f a m i l i e s a n d t h e g r o w i n g i n v o l v e m e n t o f women i n t h e w o r k f o r c e make t h e c o n t i n u e d i n v o l v e m e n t o f f a m i l i e s a m a z i n g ( B r o d y , 1 9 8 5 ; G o v e r n m e n t o f C a n a d a , 1 9 8 2 ; N a t u r a l S u p p o r t s P r o g r a m , 1 9 8 1 ) . F a m i l y s u p p o r t a d j u s t s , r a t h e r t h a n d i s s o l v e s w h e n f a c e d w i t h c h a n g e s i n d e m a n d a n d r e s o u r c e s ( Q u i n n & H u g h s t o n , 1 9 8 4 ) . D e s p i t e t h e g r o w t h o f s t a t e s e r v i c e s , 14 f a m i l i e s c o n t i n u e t o be i n v o l v e d i n c a r e . C h a p p e l l ( 1 9 8 5 ) f o u n d t h a t p e o p l e who u s e d f o r m a l s u p p o r t s w e r e m o r e l i k e l y t o h a v e c o n t a c t a n d r e c e i v e s u p p o r t f r o m f a m i l y a n d o t h e r i n f o r m a l s o u r c e s . When i n s t i t u t i o n a l i z a t i o n d o e s o c c u r , i t i s o f t e n t h e r e s u l t o f a c h r o n i c s t r e s s f u l s i t u a t i o n c o m b i n e d w i t h l i m i t e d f a m i l y r e s o u r c e s ( B r o d y , 1 9 8 5 ) . 2. S t r e s s e s o f C a r e g i v i n g : T h i s d i s c u s s i o n h a s h i g h l i g h t e d some o f t h e r e s e a r c h a n d w r i t i n g s t h a t h a v e a t t e s t e d t o t h e b e n e f i t s a n d c o n t i n u e d i n v o l v e m e n t o f f a m i l i e s i n p r o v i d i n g c a r e , b u t t h e r e a r e a l s o n e g a t i v e o u t c o m e s o f t h i s s i t u a t i o n . T h e a b u n d a n c e o f l i t e r a t u r e a i m e d a t d i s p e l l i n g t h e m y t h o f a b a n d o n m e n t may h a v e c r e a t e d a '"myth o f e n r i c h m e n t ' ( M a n c i n i i n Q u i n n & H u g h s t o n , 1 9 8 4 ) . " M o s t s t u d i e s h a v e f o c u s e d o n o b j e c t i v e m e a s u r e s o f i n v o l v e m e n t a n d h a v e n o t a d d r e s s e d t h e q u a l i t y o f t h i s i n v o l v e m e n t . A d i r e c t r e l a t i o n s h i p d o e s n o t e x i s t b e t w e e n t h e p r o v i s i o n o f c a r e a n d t h e q u a l i t y o f t h e c a r e g i v i n g r e l a t i o n s h i p ( M a n c i n i i n Q u i n n & H u g h s t o n , 1 9 8 4 ; Q u r e s h i & W a l k e r i n P h i l l i p s o n a n d W a l k e r ) 1 9 8 6 ) . N y d e g g e r ( 1 9 8 3 ) f e e l s t h a t r e s e a r c h e r s a n d p r a c t i t i o n e r s h a v e t e n d e d t o s e e t h e f a m i l y i n a r o s y l i g h t a n d h a v e i g n o r e d t h e p o s s i b l e n e g a t i v e s i d e o f many f a m i l y r e l a t i o n s h i p s . A s i n f a m i l i e s a t a n y d e v e l o p m e n t a l s t a g e , r e l a t i o n s h i p s may b e c o n f l i c t u a l , b a s e d o n o b l i g a t i o n a n d d u t y w i t h o u t a f f e c t i o n , a n d i n e x t r e m e c a s e s , e v e n a b u s i v e ( C a r r i l i o & E i s e n b e r g , 1 9 8 3 ) . T h e r e may be c o n f l i c t b e t w e e n g e n e r a t i o n s a n d 15 f a m i l y m e m b e r s r e l a t e d t o e x p e c t a t i o n s a n d c o m p e t i n g d e m a n d s ( J o h n s o n , 1 9 8 3 ) . J a r r e t t ( 1 9 8 5 ) e x a m i n e d i n t i m a c y a n d a f f e c t i o n f a c t o r s w i t h i n i n f o r m a l n e t w o r k s a n d f o u n d t h a t t h e s t r e s s o f c a r e g i v i n g c a n c a u s e d i s t a n c i n g b e t w e e n f a m i l y m e m b e r s . F a m i l i e s a r e n o t i n v i n c i b l e a n d m o r e t h a n a f f e c t i o n i s n e e d e d i n o r d e r t o m a i n t a i n p o s i t i v e c a r e g i v i n g r e l a t i o n s h i p s . T h e r o l e o f c a r e g i v e r i s v e r y s t r e s s f u l . A s B a d e r ( 1 9 8 5 ) surnmar i z e d , " S u c h c a r e g i v i n g i s t y p i c a l l y f u l l - t i m e , p h y s i c a l l y a n d e m o t i o n a l l y e x h a u s t i n g , e x p e c t e d a n d u n a p p r e c i a t e d b y f a m i l y , f r i e n d s a n d f e l l o w t a x p a y e r s " , ( p . 3 9 ) C a r e g i v e r s m u s t o f t e n d e a l w i t h d e m a n d i n g , c o n s t a n t a n d s t r e s s f u l c a r e r e s p o n s i b i l i t i e s w i t h f e w p e r s o n a l r e s o u r c e s . M u l t i p l e e m o t i o n s o f g u i l t , r e s e n t m e n t , d u t y , a n x i e t y , l o v e a n d i n s e c u r i t y a r e o f t e n f a c e d b y c a r e g i v e r s ( S e e l b a c h i n Q u i n n a n d H u g h s t o n , 1 9 8 4 ) . M a n y o f t h e c a r e g i v e r s o f t h e e l d e r l y a r e e l d e r l y t h e m s e l v e s . I t i s t h e s e p e o p l e who a r e v u l n e r a b l e t o b e c o m i n g i s o l a t e d . L i m i t e d o p p o r t u n i t i e s f o r s o c i a l i z a t i o n , r e s t r i c t e d f r i e n d s h i p n e t w o r k s , p h y s i c a l , f i n a n c i a l , a n d e m o t i o n a l s t r a i n s o f c a r i n g f o r a f r a i l p e r s o n a r e r e a l i t i e s o f l i f e f o r m any p e o p l e ( B r o d y , 1 9 8 5 ; C r o s s m a n , 1 9 8 1 ; M a s c i o c c h i , T h o m a s & M o e l l e r i n Q u i n n & H u g h s t o n , 1 9 8 4 ; S i l l i m a n & S t e r n b e r g 1 9 8 8 ) . I n a s t u d y o f c a r e g i v e r s u p p o r t , K a y a n d K i r b y ( 1 9 8 7 ) f o u n d many o f t h e c a r e g i v e r s d e p r e s s e d , a g i t a t e d a n d s o c i a l l y i s o l a t e d . T h e c a r e g i v i n g r e l a t i o n s h i p i s u s u a l l y a d y a d , n o t a f a m i l y a c t i v i t y ( J o h n s o n , 1 9 8 3 ) . S h a n a s ( 1 9 7 9 a ) h a s s u g g e s t e d a p r i n c i p l e o f s u b s t i t u t i o n w h e r e t h e r o l e i s d e t e r m i n e d b y s e r i a l a v a i l a b i l i t y a c c o r d i n g t o d e s c e n d i n g o r d e r o f i n t i m a c y . A w i f e i s m o s t o f t e n t h e c a r e g i v e r , f o l l o w e d b y a d a u g h t e r i f t h e r e i s no s p o u s e . T h e b u r d e n u s u a l l y f a l l s t o o n e p e r s o n a n d t h e r e s p o n s i b i l i t y i s s e l d o m s h a r e d . M a n y c a r e g i v e r s a r e o l d , f e m a l e , a n d a r e t h e s o l e s u p p o r t f o r t h e d i s a b l e d p e r s o n ( G i b s o n , i n N u s b e r g , 1 9 8 4 ) . T h e s t r e s s o f c a r e g i v i n g i s m o r e l i k e l y t o o u t w e i g h t h e b e n e f i t s w h e n t h e b u r d e n f a l l s t o o n e p e r s o n ( J o h n s o n , 1 9 8 3 ) . I s o l a t i o n p l a y s a m a j o r r o l e i n t h e s t r e s s t h a t t h e c a r e g i v e r e x p e r i e n c e s . R o g e r s o n ( 1 9 8 4 ) f o u n d that caregivers w i t h o u t s i d e contacts s u c h a s e m p l o y m e n t , e x p e r i e n c e d l e s s s t r e s s t h a n t h o s e c a r e g i v e r s who w e r e m o r e i s o l a t e d i n t h e i r r o l e . T h e u n e v e n g e n d e r d i v i s i o n o f c a r e g i v i n g i s a n o t h e r n e g a t i v e a s p e c t o f f a m i l y n e t w o r k s ( Q u r e s h i & W a l k e r i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . S t u d i e s h a v e r e p e a t e d l y s h o w n t h a t women a s s u m e t h e m a j o r i t y o f c a r e g i v i n g d u t i e s ( B r o d y , 1 9 8 1 ; B r o d y , J o h n s e n & F u l c o m e r , 1 9 8 4 ; H o r o w i t z , 1 9 8 5 ; S t o l l e r & E a r l , 1 9 8 3 ) . W i t h t h e c h a n g i n g r o l e o f women i n t h e w o r k p l a c e a n d w i t h i n f a m i l i e s , women a r e i n c r e a s i n g b e c o m i n g c a u g h t b e t w e e n c o m p e t i n g v a l u e s a n d n e e d s ( B r o d y , 1 9 8 1 ) . A s women b e c o m e l e s s a v a i l a b l e t o p r o v i d e d a i l y a n d i n t e n s i v e c a r e i n t h e home, t h e q u e s t i o n a r i s e s a s t o w h e t h e r o r n o t t h e e l d e r l y w i l l r e c e i v e l e s s c a r e . J o h n s o n a n d C a t a l a n o ( 1 9 8 0 ) r e f e r t o women a s t h e h i d d e n v i c t i m s a s t h e y a t t e m p t t o m e e t t h e n e e d s o f m u l t i p l e 17 g e n e r a t i o n s a n d d e a l w i t h c o m p e t i n g w o r k p l a c e d e m a n d s . M i d d l e a g e d women a r e o f t e n e m p l o y e d , t a k i n g c a r e o f o n e o r t w o p a r e n t g e n e r a t i o n s a n d t r y i n g t o m e e t t h e n e e d s o f c h i l d r e n a n d h u s b a n d s . T h e c o n f l i c t b e t w e e n r e s o u r c e s a n d e x p e c t a t i o n s i s e s p e c i a l l y a c u t e f o r t h e s e women a n d a s a r e s u l t t h e y f a c e g r e a t e r r i s k o f b u r n o u t ( H o r o w i t z , 1 9 8 5 ) . T h e y a r e f a c e d w i t h t h e c h o i c e o f t a k i n g o n y e t m o r e r e s p o n s i b i l i t y o r b u r d e n i n g t h e g u i l t o f n o t d o i n g w h a t t h e y o r s o c i e t y f e e l s s h o u l d be d o n e f o r t h e e l d e r l y f a m i l y m e m b e r . R o l e e x p e c t a t i o n s a n d v a l u e s a s s o c i a t e d w i t h f i l i a l r e s p o n s i b i l i t y a r e f u r t h e r s o u r c e s o f s t r e s s f o r c a r e g i v e r s . F i l i a l r e s p o n s i b i l i t y r e f e r s t o t h e a t t i t u d e o f p e r s o n a l r e s p o n s i b i l i t y t o w a r d s o n e ' s p a r e n t s f o r p r o t e c t i o n , c a r e a n d f i n a n c i a l s u p p o r t ( H a n s o n , S a u e r & S e e l b a c h , 1 9 8 3 ) . A s m i d d l e a g e d c h i l d r e n f a c e i n c r e a s i n g l i k e l i h o o d o f p r o v i d i n g c a r e f o r a p a r e n t o v e r many y e a r s , t h e y a l s o e x p e r i e n c e a g r o w t h o f f i l i a l a n x i e t y ( Q u i n n & H u g h s t o n , 1 9 8 4 ) . P r o v i d i n g c a r e f o r t h e a g e d i s a new p h e n o m e n a i n o u r s o c i e t y . H i s t o r i c a l l y , we h a v e t e n d e d t o s e e c a r e g i v i n g a s a s e r i a l , r a t h e r t h a n r e c i p r o c a l r e l a t i o n s h i p ( S e e l b a c h i n Q u i n n a n d H u g h s t o n , 1 9 8 4 ) . P e o p l e h a v e n o t b e e n s o c i a l i z e d t o a s s u m e c a r e g i v i n g r o l e s w i t h p a r e n t s a n d a r e i n e f f e c t , a c t i n g a s p i o n e e r s i n t h i s new a r e a . T h e y h a v e no c l e a r d e f i n i t i o n o f t h e c o n t e n t a n d l i m i t s t o t h e i r r o l e a s c a r e g i v e r s . ( M a s c i o c c h i , T h o m a s & M o e l l e r i n Q u i n n a n d H u g h s t o n , 1 9 8 4 ) . W h i l e c a r e g i v i n g i s b e c o m i n g a n o r m a t i v e s t a g e f o r m any f a m i l i e s , we s t i l l k n o w v e r y l i t t l e a b o u t i t ( B r o d y , 18 1985; K i v n i c k i n Quinn & Hughston, 1984). " F i l i a l r e s p o n s i b i l i t y has not been e x p l i c i t l y taught or d i s c u s s e d , r a t h e r i t has been passed on from one g e n e r a t i o n to the next i n a set of i m p l i c i t assumptions t h a t f o s t e r m i s p e r c e p t i o n s and d y s f u n c t i o n a l communication." (Seelbach i n Quinn & Hughston, 1984 p.100) The ambiguity over f i l i a l r e s p o n s i b i l i t y c r e a t e s c o n f l i c t and value d i f f e r e n c e s between generations as to the degree and content of c o n t a c t between g e n e r a t i o n s . The a d u l t c h i l d i s faced with c o n f l i c t between valu e s of independence and o b l i g a t i o n (Johnson, 1983). Cantor (1983) found i n a New York study t h a t there were many value and e x p e c t a t i o n gaps between g e n e r a t i o n s . Those f a m i l i e s with very c l o s e r e l a t i o n s h i p s and high e x p e c t a t i o n s experienced more s t r a i n r e l a t e d to t h e i r c a r e g i v i n g r e s p o n s i b i l i t i e s than f a m i l i e s who maintained some s o c i a l and emotional d i s t a n c e from the parents. T h i s supports a statement by Quinn (1984), "Although there are p o s i t i v e outcomes i n a c c e p t i n g a h e l p i n g r o l e with a parent, p o t e n t i a l l y negative consequences far outweigh p o s i t i v e ones when f i l i a l e x p e c t a t i o n s are high", (p.27) The l i m i t a t i o n s faced by f a m i l i e s and i n d i v i d u a l s p r o v i d i n g care coupled with unclear r o l e p r e s c r i p t i o n s c r e a t e s a s i t u a t i o n that i s conducive to the development of s t r e s s and c o n f l i c t . T h i s c o n f l i c t can lead to f r u s t r a t i o n and disappointment as both generations face unmet needs. The r e a l i t y i s t h a t many f a m i l i e s 19 a r e f a c i n g a s i t u a t i o n w h e r e t h e y a r e n o t n e c e s s a r i l y l e s s w i l l i n g , b u t p e r c e i v e t h e m s e l v e s a s u n a b l e t o m e e t t h e d e m a n d s t h a t t h e y a r e f a c e d w i t h . 3. C o n t r o l I s s u e s a s R e l a t e d t o C a r e g i v e r C o p i n g : L o c u s o f c o n t r o l h a s b e e n r e l a t e d t o w e l l - b e i n g a m o n g s t t h e e l d e r l y a n d t h e i r c a r e g i v e r s i n a n u m b e r o f s t u d i e s ( B r o w n & G r a n i c k , 1 9 8 3 ; G u a r n e r a & W i l l i a m s , 1 9 8 4 ; P a g e l , B e c k e r & C o p p e l , 1 9 8 5 ; S l i v i n s k e & F i t c h , 1 9 8 5 ) . M a n y p r o b l e m s o f a g i n g a r e a s s o c i a t e d w i t h a l o s s o f c o n t r o l o v e r t h e e n v i r o n m e n t ( S l i v i n s k e & F i t c h , 1 9 8 5 ) . K u y p e r s a n d B e n g s t o n ( i n Q u i n n & H u g h s t o n , 1 9 8 4 ) a s s e r t t h a t i t i s i m p o r t a n t t o h a v e a s e n s e o f m a s t e r y o v e r l i f e c i r c u m s t a n c e s a n d t h a t t h e f a m i l y p r o v i d e s a c o n t e x t f o r t h e e l d e r l y t o d e v e l o p a n d m a i n t a i n a s e n s e o f c o n t r o l . B u t , f o r t h e c a r e g i v e r , d e p r e s s i o n , l o w m o r a l e , a n d s e l f i m a g e a s w e l l a s t h e a b i l i t y t o c o p e w i t h d a i l y p r o b l e m s may be a f f e c t e d b y t h e p e r c e p t i o n o f e x t e r n a l c o n t r o l ( B r o w n & G r a n i c k , 1 9 8 3 ; P a g e l e t a l . , 1 9 8 5 ) . W e l l - b e i n g f o r t h e c a r e g i v e r a s w e l l a s t h e c a r e r e c e i v e r i n c l u d e s h a v i n g p o w e r o v e r d e c i s i o n m a k i n g a n d i n f l u e n c e o v e r w e l f a r e a n d t h e i n v o l v e m e n t o f s u p p o r t s ( M a n c i n i i n Q u i n n & H u g h s t o n , 1 9 8 4 ) . T h i s d i s c u s s i o n h a s o u t l i n e d e v i d e n c e s u p p o r t i n g t h e i n v o l v e m e n t o f f a m i l y i n p r o v i d i n g c a r e f o r t h e e l d e r l y a s w e l l a s t h e s t r e s s e s a n d l i m i t a t i o n s t h a t t h i s s u p p o r t n e t w o r k f a c e s . U n d e r s t a n d i n g t h e n e e d s o f f a m i l y c a r e g i v e r s a n d how p o l i c y a n d p r o g r a m s s h o u l d s u p p o r t t h e s e s i t u a t i o n s , n e c e s s i t a t e s a n u n d e r s t a n d i n g o f f a m i l y d y n a m i c s a n d l o c u s o f c o n t r o l i n t h e 20 c a r e g i v i n g r e l a t i o n s h i p b o t h w i t h i n f a m i l i e s a n d b e t w e e n f o r m a l a n d i n f o r m a l n e t w o r k s . " I f t h e s e n s e o f c o n t r o l a n d h e n c e t h e a d a p t i v e a b i l i t i e s o f o l d e r p e o p l e a r e t o be e n h a n c e d , i n f l u e n c e s o n a d a p t a t i o n s u c h a s l o c u s o f c o n t r o l a n d h e a l t h m u s t be b e t t e r u n d e r s t o o d . " ( B r o t h e n & D e t z n e r , 1 9 8 3 ) I f t h e g o a l o f f o r m a l s u p p o r t s i s t o e n c o u r a g e a n d f a c i l i t a t e c o n t i n u e d c a r e b y f a m i l y m e m b e r s , many o f whom a r e e l d e r l y t h e m s e l v e s , d y n a m i c s s u c h a s h e a l t h , s e l f p e r c e p t i o n a n d l o c u s o f c o n t r o l w i l l be i m p o r t a n t . 4. N e e d f o r S u p p o r t : E v i d e n c e p o i n t s t o a s i t u a t i o n w h e r e d e d i c a t e d i n f o r m a l n e t w o r k s a r e t r y i n g t o c o p e w i t h c a r e d e m a n d s t h a t a r e s t r e s s f u l a n d a t t i m e s b e y o n d t h e i r a b i l i t i e s . F a m i l i e s make many s a c r i f i c e s a n d t h e r e f o r e i n t e r v e n t i o n s h o u l d b e f o c u s e d o n t h e s e s p o u s e s a n d c h i l d r e n ( C a n t o r , 1 9 8 3 ) . F a m i l i e s a r e a n e f f e c t i v e a n d c h e a p s o u r c e o f c a r e . F o r m a l s u p p o r t s s h o u l d a i m t o s u p p o r t a n d n o t s u b s t i t u t e f o r t h e e f f o r t s p r o v i d e d b y f a m i l y c a r e g i v e r s ( B a d e r , 1 9 8 5 ; M i n d e l , 1 9 7 9 ; S t o l l e r & E a r l , 1 9 8 3 ) . To b e g i n w i t h , many a u t h o r s f e e l t h a t i t i s n e c e s s a r y t o a d o p t a h o l i s t i c d e f i n i t i o n o f h e a l t h a n d w e l l - b e i n g t h a t i n c o r p o r a t e s p h y s i c a l , m e n t a l a n d e n v i r o n m e n t a l h e a l t h . P s y c h o l o g i c a l a n d s o c i a l f a c t o r s s h o u l d b e c o n s i d e r e d a l o n g w i t h p h y s i c a l a n d m e d i c a l s t a t u s . ( C h a p p e l l e t a l . , 1 9 8 6 ; G o v e r n m e n t o f C a n a d a , 1 9 8 2 ; W i l k i n & H u g h e s i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . T h i s k i n d o f a n a p p r o a c h t o h e a l t h i n v o l v e s t h e i n d i v i d u a l i n 21 t h e d e f i n i t i o n o f w e l l - b e i n g a s w e l l a s t h e c o n t e n t a n d d e l i v e r y o f s e r v i c e s . O n c e t h i s k i n d o f d e f i n i t i o n i s a d o p t e d , a m o r e c o m p l e m e n t a r y r o l e b e t w e e n f a m i l i e s a n d t h e s t a t e c a n d e v e l o p . T h e r e i s a n e e d t o i n c r e a s e t h e c o - o r d i n a t i o n a n d i n t e r f a c e b e t w e e n f o r m a l a n d i n f o r m a l s u p p o r t n e t w o r k s ( B r o d y , 1 9 8 1 ; C h a p p e l l e t a l . , 1 9 8 6 ) i n o r d e r t o m a x i m i z e t h e b e n e f i t s t o b o t h c a r e n e t w o r k s a n d c a r e r e c e i v e r s . T h e s e t w o l e v e l s o f s u p p o r t h a v e t h e p o t e n t i a l t o c o m p l e m e n t e a c h o t h e r ( L i t w a k , 1 9 8 5 ) a n d i n f a c t n e e d e a c h o t h e r i n o r d e r t o m e e t t h e w i d e r a n g e o f n e e d s t h a t o l d e r f a m i l i e s c a n f a c e ( Q u r e s h i & W a l k e r i n P h i l l i p s o n a n d W a l k e r , 1 9 8 6 ) . S h a n a s a n d S u s s m a n ( 1 9 7 7 ) h a v e s u g g e s t e d t h a t t h e b a s i c g o a l o f t h e s e t w o s y s t e m s i s t h e same — s u p p o r t a n d c a r e o f t h e a g e d p e r s o n - - a n d t h a t t h e y c a n a i d e a c h o t h e r i n r e a c h i n g t h i s common g o a l . U n d e r s t a n d i n g t h e n e e d f o r s u p p o r t i s c o m p l i c a t e d . To b e g i n w i t h , a b e t t e r u n d e r s t a n d i n g o f t h e o l d e r f a m i l y m u s t be d e v e l o p e d a s t h e f i r s t s t e p i n c r e a t i n g s u p p l e m e n t a l r o l e s ( B r o d y , 1 9 8 5 ; S h a n a s , 1 9 7 9 a ) . T h e c o p i n g a b i l i t y o f a f a m i l y a n d t h e i n d i v i d u a l s w i t h i n t h e s y s t e m i s r e l a t e d t o t h e d e v e l o p m e n t o f t h e f a m i l y , t h e m e a n i n g t h a t i s a s s i g n e d t o a n e v e n t a n d t h e f l e x i b i l i t y a n d f u n c t i o n i n g s t y l e o f t h a t f a m i l y ( K u y p e r s & B e n g s t o n i n Q u i n n a n d H u g h s t o n , 1 9 8 4 ) . T h e n e e d s o f t h e c a r e g i v e r c a n n o t be d e t e r m i n e d f r o m o b j e c t i v e a c c o u n t s o f t h e s i t u a t i o n . T h e p e r c e p t i o n s a n d p e r s o n a l r e a c t i o n s o f e a c h i n d i v i d u a l m u s t be a c c o u n t e d f o r ( C h a p p e l l e t a l . , 1 9 8 6 ; 22 C o u r t n e y , 1 9 8 6 ; K o f f , 1 9 8 2 ) a l o n g w i t h t h e f a m i l y h i s t o r y , o l d i s s u e s a n d v a l u e s ( B r o d y , 1 9 8 5 ; M i n d e l l , 1 9 7 9 ; Q u i n n & H u g h s t o n , 1 9 8 4 ) . T h e n e e d s o f t h e c a r e g i v e r m u s t be b a l a n c e d , b u t n o t o v e r s h a d o w e d b y t h e n e e d s o f t h e c l i e n t ( C h a p p e l l e t a l . , 1 9 8 6 ; S i l l i m a n & S t e r n b e r g , 1 9 8 8 ; Q u r e s h i & W a l k e r i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . T h e c a r e g i v i n g f a m i l y o f t e n f a c e s a v a r i e t y o f n e e d s a n d r e q u i r e s v a r i e t y a n d f l e x i b i l i t y i n t h e s e r v i c e s t h a t a r e a v a i l a b l e ( B r o d y , 1 9 8 1 ; C a n t o r , 1 9 8 3 ; C o u r t n e y , 1 9 8 6 ; L i t w a k , 1 9 8 5 ) . C h a p p e l l ( 1 9 8 6 ) f o u n d t h a t k n o w l e d g e o f s e r v i c e s a n d c o m m u n i t y s u p p o r t was r e l a t e d t o s o c i a l a n d e c o n o m i c s t a t u s a n d n o t t o n e e d . A n o t h e r s t u d y f o u n d t h a t c l o s e d f a m i l y n e t w o r k s h a d l i t t l e i n f o r m a t i o n a n d d e l a y e d i n v o l v e m e n t w i t h f o r m a l . s u p p o r t s ( W a r d , S h e r m a n & L a G o r y , 1 9 8 4 ) . T h e s e f i n d i n g s u p p o r t t h e s u g g e s t i o n s made b y m a n y a u t h o r s t h a t f o r m a l s u p p o r t t o f a m i l i e s m u s t i n v o l v e e d u c a t i o n a n d p r e v e n t i v e s e r v i c e s ( A u e r b a c h & G e r b e r , 1 9 7 6 ; C a n t o r , 1 9 8 3 ; G o v e r n m e n t o f C a n a d a , 1 9 8 2 ) . I n c r e a s e d a c c e s s i b i l i t y , p u b l i c a w a r e n e s s , f l e x i b i l i t y a n d r e s p o n s i v e n e s s a r e n e c e s s a r y c o m p o n e n t s o f s e r v i c e s g e a r e d t o f a m i l y s u p p o r t . F a m i l i e s m u s t be a b l e t o s e e k o u t a n d a c c e s s s e r v i c e s b e f o r e a c r i s i s d e v e l o p s . I n h e r 1 9 8 6 t h e s i s , C o u r t n e y i d e n t i f i e d t h e l a c k o f i n f o r m a t i o n r e g a r d i n g t h e l i n k b e t w e e n f a m i l y n e e d a n d c o m m u n i t y s e r v i c e s . I t i s i m p o r t a n t f o r f a m i l i e s t o l e a r n t o d e a l w i t h b u r e a u c r a c i e s i f t h e y a r e t o p r o v i d e t h e l i n k b e t w e e n f o r m a l s e r v i c e s a n d t h e c a r e n e e d s o f e l d e r l y p e r s o n s i n t h e c o m m u n i t y ( S h a n a s & S u s s m a n , 1 9 7 7 ) . T h i s r e q u i r e s t r a i n i n g a n d s k i l l d e v e l o p m e n t ( B a d e r , 1 9 8 5 ; M i n d e l , 1 9 7 9 ) . F i n a n c i a l s u p p o r t s h a v e b e e n s u g g e s t e d a s u s e f u l i n i n c r e a s i n g t h e r e s o u r c e s a n d c o n t r o l o f f a m i l y c a r e g i v e r s ( Q u i n n & H u g h s t o n , 1 9 8 4 ) , b u t o t h e , r s t u d i e s h a v e s h o w n t h a t r e l i e f f r o m e m o t i o n a l a n d p e r s o n a l s t r a i n i s m o r e i m p o r t a n t t o c a r e g i v e r s ( A r l i n g & M c A u l e y , 1 9 8 3 ; K i r b y & K a y , 1 9 8 7 ) . A l o n g w i t h e m o t i o n a l s u p p o r t , c a r e g i v e r s n e e d c o u n s e l l i n g t o i n c r e a s e t h e i r s e l f - a w a r e n e s s o f t h e e m o t i o n a l d r a i n s a n d c o n f l i c t t h a t t h e y f a c e ( B a d e r , 1 9 8 5 ) . T h e common t h e m e t h r o u g h o u t a l l o f t h e s e s u g g e s t i o n s f o r s u p p o r t i n g t h e c a r e g i v e r i s t h e n e e d f o r s e r v i c e s t o be f l e x i b l e a n d o r i e n t e d t o a s y s t e m a s s e s s m e n t o f n e e d t h a t a c c o u n t s f o r b o t h t h e c a r e r a n d t h e c a r e r e c e i v e r . Q u r e s h i a n d W a l k e r ( i n P h i l l i p s o n a n d W a l k e r , 1 9 8 6 ) d i s c u s s t h e n e e d t o p r o v i d e c a r e w i t h i n t h e f a m i l y r a t h e r t h a n i m p o s i n g e x t e r n a l s o l u t i o n s o r a t t e m p t i n g t o p r o v i d e r e l i e f b y t a k i n g r o l e s o r r e s p o n s i b i l i t i e s a w a y f r o m t h e f a m i l y . T h i s r e v i e w o f t h e l i t e r a t u r e h a s , u p t o t h i s p o i n t , t o u c h e d o n t h e r o l e o f f a m i l y c a r e g i v e r s , t h e s t r e s s e s t h a t t h e y f a c e a n d some o f t h e s u g g e s t i o n s t h a t a r e made f o r p r o v i d i n g s u p p o r t t o t h e i n f o r m a l n e t w o r k . T h e n e x t s e c t i o n p r o v i d e s a n o v e r v i e w o f t h e l i t e r a t u r e t h a t a d d r e s s e s t h e p r e s e n t s t r u c t u r e o f h e a l t h c a r e s u p p o r t s . P e r s p e c t i v e s o n t h e w a y s i n w h i c h t h i s s y s t e m h a s b o t h s u c c e e d e d a n d f a i l e d t o m e e t t h e n e e d s o f f a m i l y c a r e g i v e r s w i l l b e p r e s e n t e d . 24 S o c i a l P o l i c y a n d F a m i l y S u p p o r t G i v e n t h e n e e d t o p r o v i d e s u p p o r t t o f a m i l i e s o f a g e d p e r s o n s a n d t o d e v e l o p a c o m p l e m e n t a r y r e l a t i o n s h i p b e t w e e n f o r m a l a n d i n f o r m a l s u p p o r t n e t w o r k s , s o c i a l p o l i c i e s a n d p r o g r a m d e v e l o p m e n t h a v e s h o w n some p r o g r e s s i n t h i s a r e a , b u t t h e r e a r e s e v e r a l f a c t o r s t h a t w o r k t o c o n s t r a i n t h e i n t r o d u c t i o n o f m o r e r e s p o n s i v e s e r v i c e s . 1. V a l u e s a n d A s s u m p t i o n s o f t h e P r e s e n t S e r v i c e S y s t e m : I n C a n a d a , t h e s y s t e m o f s e r v i c e s a n d b e n e f i t s f o r t h e e l d e r l y e n c o m p a s s e s t h e a r e a s o f i n c o m e , h o u s i n g a n d h e a l t h c a r e s e r v i c e s ( G o v e r n m e n t o f C a n a d a , 1 9 8 2 ) . T h e d e v e l o p m e n t o f t h e s e p r o g r a m s h a s g r o w n o u t o f a s e t o f v a l u e s a n d a s s u m p t i o n s a b o u t t h e n e e d s o f t h e e l d e r l y p o p u l a t i o n a n d t h e r e s p o n s i b i l i t y o f t h e s t a t e i n m e e t i n g t h e s e n e e d s . U n d e r s t a n d i n g t h e l i m i t a t i o n s a n d p o t e n t i a l o f t h e f o r m a l c a r e s y s t e m r e q u i r e s a n e x a m i n a t i o n o f t h e i d e o l o g i c a l p e r s p e c t i v e f r o m w h i c h i t h a s b e e n d e v e l o p e d ( D o b e l s t e i n & J o h n s o n , 1 9 8 5 ) . N e y s r n i t h ( 1 9 8 6 ) b e l i e v e s t h a t t h e r e i s a m i x o f o b j e c t i v e s i n m a n y s o c i a l p o l i c i e s . C o l l e c t i v e r e s p o n s i b i l i t y o f t h e s t a t e a n d s o c i e t y f o r m e e t i n g n e e d s i s c o m b i n e d w i t h v a l u e s o f m e r i t a n d i n d i v i d u a l r e s p o n s i b i l i t y . W h i l e some p r o g r a m s s u c h a s i n c o m e s e c u r i t y a r e p r e s e n t e d a s a s o c i e t a l o b l i g a t i o n t h e s e p r o g r a m s c o n t i n u e t o a c t a s s o c i a l s a f e t y n e t s . P u b l i c p r o v i s i o n s a r e m i n i m a l a n d t h e b u l k o f r e s p o n s i b i l i t y f o r e n s u r i n g t h a t n e e d s a r e m e t c o n t i n u e s t o f a l l t o f a m i l i e s a n d 25 i n d i v i d u a l s . A p e n s i o n s y s t e m t h a t r e w a r d s t h o s e w h o s e i n c o m e a l l o w s t h e m t o s a v e f o r t h e i r own r e t i r e m e n t i s a n e x a m p l e o f t h i s k i n d o f a t t i t u d e p u t i n t o p r a c t i c e . S o c i e t y o n l y r e l u c t a n t l y r e c o g n i z e s i t s o b l i g a t i o n t o m e e t t h e c o l l e c t i v e n e e d s o f t h e p o p u l a t i o n a n d i n d o i n g s o p r o v i d e s a m i n i m u m l e v e l " o f s u p p o r t . I n t h e c a s e o f a g i n g f a m i l i e s , many s e r v i c e s r e i n f o r c e t h e b e l i e f i n f a m i l y r e s p o n s i b i l i t y . S u p p o r t s a r e d e s i g n e d t o p r o v i d e c a r e i n t h e a b s e n c e o f f a m i l y , r a t h e r t h a n i n c o n j u n c t i o n w i t h f a m i l y ( W e i h l i n S h a n a s & S u s s m a n , 1 9 7 7 ) . M a n y home s u p p o r t s s u c h a s m e a l s o n w h e e l s , o r h o u s e c l e a n i n g , a r e w i t h h e l d i f i t i s f e l t t h a t f a m i l y m e m b e r s a r e a v a i l a b l e t o f u l f i l l t h e t a s k s . I n o r d e r t o d e v e l o p s e r v i c e s t h a t a d e q u a t e l y c o m p l e m e n t t h e e x i s t i n g i n v o l v e m e n t o f i n f o r m a l n e t w o r k s , t h e r e n e e d s t o be a move a w a y f r o m t h i s e t h i c o f p e r s o n a l r e s p o n s i b i l i t y ( L y n d o n B. J o h n s o n S c h o o l o f P u b l i c A f f a i r s , 1 9 7 7 ) . B e l i e f s a n d a t t i t u d e s a b o u t t h e f a m i l y h a v e i n f l u e n c e d t h e r o l e t h a t t h e s t a t e h a s t a k e n i n p r o v i d i n g s e r v i c e s . T h e f a m i l y c o n t i n u e s t o be s e e n a s a f r a g i l e i n s t i t u t i o n . A d e l i c a t e b a l a n c e i s b e l i e v e d t o e x i s t b e t w e e n g o v e r n m e n t a c t i o n a n d t h e i n d e p e n d e n c e o f f a m i l i e s ( N a t u r a l S u p p o r t s P r o g r a m , 1 9 8 1 ; N u s b e r g , 1 9 8 4 ) . T h e s t a t e i s a b l e t o j u s t i f y l i m i t e d i n v o l v e m e n t a n d e v e n a r e t r e a t f r o m p r o v i d i n g s u p p o r t a s a n a t t e m p t t o r e s t o r e t h e a u t o n o m y o f f a m i l i e s ( B i n n e y & E s t e s , 1 9 8 8 ) . T h e b e l i e f t h a t s t a t e s u p p o r t s f o s t e r d e p e n d e n c y c o m b i n e s w i t h t h e b e l i e f t h a t f a m i l i e s a r e r e s p o n s i b l e t o p l a n 26 f o r a n d m e e t t h e i r own n e e d s a s t h e y a g e . T h e r e s u l t i s a m i n i m a l i n v o l v e m e n t o f t h e s t a t e i n f a m i l y a f f a i r s . I n t e r v e n t i o n i s g e a r e d o n l y a t p a t h o l o g i c a l a n d d e v i a n t s i t u a t i o n s ( N u s b e r g , 1 9 8 4 ) . I n C a n a d a , t h e r e h a s b e e n a b e l i e f i n t h e ' h o l i n e s s ' a n d i n d e p e n d e n c e o f t h e n u c l e a r f a m i l y . C o n s e r v a t i v e i d e o l o g i e s h a v e l e a d t o a p r a c t i c e o f m i n i m a l i n v o l v e m e n t i n a r e a s t h a t a r e b e l i e v e d t o be p r i v a t e r e s p o n s i b i l i t i e s o f t h e f a m i l y . T h e r e l u c t a n c e o f o u r l e g a l a n d j u d i c i a l s y s t e m t o r e c o g n i z e c h i l d a n d s p o u s e a b u s e a n d now e l d e r a b u s e i s a p r i m e e x a m p l e o f o u r r e l u c t a n c e t o a l l o w t h e s t a t e i n t o t h e h o m es o f i t s c i t i z e n s . V i e w s o f a g i n g a n d t h e r o l e o f t h e a g e d i n s o c i e t y a l s o c o n t r i b u t e t o t h e d e v e l o p m e n t o f s o c i a l p o l i c i e s . T h e t e n d e n c y t o w a r d s n o n - i n t e r f e r e n c e i n t h e l i v e s o f t h e e l d e r l y a n d f a m i l i e s i s r e i n f o r c e d b y t h e o r i e s o f a g i n g s u c h a s C u m m i n g s a n d H e n r y ' s ( 1 9 6 1 ) t h e o r y o f d i s e n g a g e m e n t . T h i s t h e o r y s u p p o r t s p o l i c i e s t h a t i s o l a t e e l d e r l y a n d r e m o v e t h e m f r o m m a i n s t r e a m s o c i e t y ( T o w n s e n d i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . A g e i s m a n d s t e r e o t y p e s o f t h e e l d e r l y a r e r e i n f o r c e d b y t h e b e l i e f t h a t a g i n g i s s y n o n y m o u s w i t h d e p e n d e n c y a n d d i s a b i l i t y ( C h a p p e l l e t a l . , 1 9 8 6 ) . H e a l t h c a r e a n d s u p p o r t s e r v i c e s f o r t h e e l d e r l y d o n o t c o n t r i b u t e t o p r o d u c t i v i t y . One C a n a d i a n r e p o r t ( G o v e r n m e n t o f C a n a d a , 1 9 8 2 ) f e l t i t n e c e s s a r y t o j u s t i f y s e r v i c e s f o r t h e a g e d on t h e b a s i s t h a t t h e y " s h o u l d be s e e n a s t h e m a r k o f a c i v i l i z e d s o c i e t y " ( p . 4 7 ) . W h i l e a t t i t u d e s a b o u t p e r s o n a l r e s p o n s i b i l i t y a n d t h e r o l e 27 o f g o v e r n m e n t i n m e e t i n g c o l l e c t i v e n e e d s h a v e i n f l u e n c e d s o c i a l p o l i c i e s i n g e n e r a l , h e a l t h c a r e s e r v i c e s i n p a r t i c u l a r h a v e b e e n s h a p e d b y a t r a d i t i o n a l m e d i c a l m o d e l o f s e r v i c e d e l i v e r y . T h i s m o d e l f o c u s e s o n p a t h o l o g y a n d h e a l i n g , r a t h e r t h a n p h y s i c a l , s o c i a l a n d e n v i r o n m e n t a l h e a l t h ( C h a p p e l l e t a l . , 1 9 8 G ; W i l k i n & H u g h e s i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . F u n d i n g f o r s e r v i c e s i s d i r e c t e d a t a c u t e a n d i n s t i t u t i o n a l c a r e . S e r v i c e s s u c h a s r e s p i t e a n d o t h e r f a m i l y s u p p o r t s t h a t a r e n o t d i r e c t l y m e d i c a l a n d d i s e a s e b a s e d m u s t c o n t i n u a l l y j u s t i f y t h e m s e l v e s i n o r d e r t o r e c e i v e g o v e r n m e n t f u n d i n g ( C a r r i l i o & E i s e n b e r g , 1 9 8 3 ) . Some a u t h o r s h a v e h a i l e d t h e g r o w t h o f g e r i a t r i c s p e c i a l t i e s w i t h i n m e d i c i n e a s a move t o b e t t e r u n d e r s t a n d i n g t h e n e e d s o f t h e e l d e r l y , b u t t h i s t r e n d s e r v e s t o f u r t h e r c o m p a r t m e n t a l i z e t h e n e e d s o f t h e e l d e r l y ( W i l k i n &. H u g h e s i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . N e e d s c o n t i n u e t o be d e f i n e d b y o u t s i d e r s o n t h e b a s i s o f o b j e c t i v e d i s e a s e r e l a t e d c r i t e r i a ( K a u f m a n , 1 9 8 0 ) r a t h e r t h a n b e i n g b a s e d o n s o c i a l s i t u a t i o n s a n d i n d i v i d u a l p e r c e p t i o n s . T h e m e d i c a l m o d e l t h a t u n d e r l i e s t h e d e v e l o p m e n t o f h e a l t h s e r v i c e s h a s i n f l u e n c e d t h e t y p e o f s e r v i c e s t h a t a r e a v a i l a b l e a n d t h e w a y i n w h i c h t h e f o r m a l s y s t e m h a s d e v e l o p e d t o a t t i m e s r e p l a c e a n d a t t i m e s c o m p l e m e n t t h e e f f o r t s o f f a m i l y . T h e n e x t s e c t i o n p r o v i d e s a r e v i e w o f t h e s e p o l i c i e s . 2. P o l i c y D e v e l o p m e n t : T h e l i t e r a t u r e c o n t a i n s t w o a r g u m e n t s ; o n e s u p p o r t i n g a 28 c o m p l e m e n t a r y r o l e b e t w e e n f o r m a l a n d i n f o r m a l a n d a n o t h e r v i e w i n g t h e p r e s e n t s t a t e s e r v i c e s a s r e p l a c i n g f a m i l y i n v o l v e m e n t . F o r m a l h e a l t h c a r e s e r v i c e s a r e s e e n b y some t o d e t r a c t f r o m f a m i l y i n v o l v e m e n t ( K a u f m a n , 1 9 8 0 ; N a t u r a l S u p p o r t s P r o g r a m , 1 9 8 1 ) . T h e s e s e r v i c e s a r e a r g u e d t o be b o t h t h e c a u s e a n d e f f e c t o f t h e d e c l i n e o f f a m i l y i n v o l v e m e n t i n c a r e g i v i n g . W h i l e t h e r e e x i s t s a p o t e n t i a l f o r t h e d e v e l o p m e n t o f a c o m p l e m e n t a r y r o l e b e t w e e n t h e s e t w o s o u r c e s o f s u p p o r t , t h e f o r m a l s y s t e m h a s f a i l e d t o c o m p l e m e n t t h e e x i s t i n g r e c i p r o c a l a n d i n f o r m a l s u p p o r t s ( T o w n s e n d i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . B r o d y ( 1 9 8 5 ) b e l i e v e s t h a t t h e f o c u s o n p r o v i d i n g i n c e n t i v e s t o e n c o u r a g e f a m i l i e s t o c o n t i n u e c a r e g i v i n g i g n o r e s t h e a l r e a d y h i g h i n v o l v e m e n t t h a t many f a m i l i e s h a v e i n t h e c a r e o f t h e e l d e r l y . P o l i c i e s t h a t l i m i t o p t i o n s a n d r e s o u r c e s a v a i l a b l e t o f a m i l i e s s e r v e t o p e r p e t u a t e m y t h s o f f a m i l y a b a n d o n m e n t ( B r o d y , 1 9 8 5 ; K a u f m a n , 1 9 8 0 ) . T h e i n a d e q u a c y o f home s u p p o r t s t h a t f o r c e s some f a m i l i e s t o s e e k i n s t i t u t i o n a l i z a t i o n a s a s o l u t i o n i s a n e x a m p l e o f how t h e l a c k o f s u p p o r t s r e s u l t s i n t h e s u b s t i t u t i o n o f s t a t e f o r f a m i l y c a r e . T o w n s e n d ( i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) a d o p t s a m o r e M a r x i s t a r g u m e n t w h e n he s t a t e s t h a t m u ch o f t h e d e p e n d e n c y o f t h e e l d e r l y a n d t h e i r f a m i l i e s h a s b e e n s t r u c t u r e d b y e x i s t i n g p o l i c i e s . " D e p e n d e n c y o f e l d e r l y h a s b e e n s t r u c t u r e d b y l o n g t e r m e c o n o m i c a n d s o c i a l p o l i c i e s : e l d e r l y p e o p l e a r e p e r c e i v e d 29 a n d t r e a t e d a s m o r e d e p e n d e n t t h a n a r e o r n e e d t o be b y t h e s t a t e . " ( p . 1 5 ) T h e s y s t e m g i v e s p e o p l e f e w c h o i c e s a n d t r e a t s t h e e l d e r l y a s p a s s i v e r e c i p i e n t s o f s e r v i c e . P o l i c i e s r u l e t h e s c h e d u l e a n d a v a i l a b i l i t y o f home s u p p o r t s a s w e l l a s t h e r o u t i n e a n d c o n t e n t o f i n s t i t u t i o n a l l i f e . T h e e l d e r l y p e r s o n h a s l i t t l e i n p u t i n w h a t s e r v i c e s he o r s h e w i l l r e c e i v e a n d how t h a t s u p p o r t w i l l b e d e l i v e r e d . A l a c k o f f a m i l y p o l i c i e s h a s b e e n i d e n t i f i e d a s a s i g n i f i c a n t f a c t o r i n t h e i n a b i l i t y o f t h e p r e s e n t s y s t e m t o a d e q u a t e l y a s s e s s o r p r o v i d e s u p p o r t t o f a m i l i e s ( N a t u r a l S u p p o r t s P r o g r a m , 1 9 8 1 ; N u s b e r g , 1 9 8 4 ) . P r e v e n t a t i v e s e r v i c e s o r s e r v i c e s t h a t i n c o r p o r a t e f a m i l y i n v o l v e m e n t a r e r a r e ( N o v a k , 1 9 8 5 ; T o w n s e n d i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . T h e n e e d s o f t h e e l d e r l y a r e i s o l a t e d f r o m t h e i r f a m i l y a n d s o c i a l c o n t e x t s ( N a t u r a l S u p p o r t s P r o g r a m , 1 9 8 1 ) . T h e r e i s l i t t l e c o n s i d e r a t i o n o f i n t e r d e p e n d e n t r e l a t i o n s h i p s b e t w e e n g e n e r a t i o n s a n d n e t w o r k s o f s u p p o r t . T o w n s e n d s t a t e s ( 1 9 8 6 ) , " I n g e n e r a l a p i c t u r e e m e r g e s o f a v e r y r o u g h r e l a t i o n s h i p b e t w e e n n e e d a n d s e r v i c e a n d l i t t l e r e l a t i o n s h i p o f s e r v i c e t o t h e i n i t i a t i o n o r r e s t o r a t i o n o f r e c i p r o c a l s e r v i c e s a m o n g n e i g h b o r s o r m e m b e r s o f f a m i l y " ( p . 4 1 ) . I n r e c e n t y e a r s t h e r e h a s b e e n i n c r e a s i n g c o n c e r n a n d d i s c u s s i o n a b o u t p r o v i d i n g f a m i l y s u p p o r t i n t h e c o m m u n i t y . T h i s r e c o g n i t i o n h a s l e d t o t h e d e v e l o p m e n t o f L o n g T e r m C a r e p r o g r a m s a c r o s s t h e c o u n t r y . D e s p i t e t h i s a p p a r e n t s h i f t i n 30 p r i o r i t y t o c o m m u n i t y c a r e , t h e f o r m a l s y s t e m h a s e x p e r i e n c e d l i m i t e d s u c c e s s i n b e i n g a b l e t o c o n c e p t u a l i z e a n d o p e r a t i o n a l i z e e f f e c t i v e c o m m u n i t y s u p p o r t ( G o v e r n m e n t o f C a n a d a , 1 9 8 2 ; T o w n s e n d i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) . E s s e n t i a l l y , t h e p r o b l e m s f a c i n g a g i n g f a m i l i e s a r e new t o i n d i v i d u a l s a n d s o c i e t y a l i k e . T h e r e i s s t i l l a l a c k o f k n o w l e d g e a b o u t how t o d e f i n e o r a s s e s s i n t e r v e n t i o n ( K o f f , 1 9 8 2 ) . E a r l i e r , t h e m e d i c a l m o d e l was d e s c r i b e d a s t h e u n d e r l y i n g m o d e l i n t h e d e v e l o p m e n t o f h e a l t h c a r e s u p p o r t s . P o l i t i c a l l y , t h e h e a l t h c a r e s y s t e m h a s b e e n t h e e a s i e s t a r e a i n w h i c h t o e x p a n d s e r v i c e s f o r t h e e l d e r l y . G i v e n t h e m e d i c a l b i a s o t t h i s s y s t e m t o w a r d s a h e a l i n g m o d e l a n d t h e u s e o f h i g h c o s t i n s t i t u t i o n a l s e r v i c e s , L o n g T e r m C a r e s e e m s t o be t i e d t o a s y s t e m t h a t h a s l i t t l e i n t e r e s t i n i t ( K a u f m a n , 1 9 8 0 ) . C o m m u n i t y b a s e d s e r v i c e s a r e e s s e n t i a l l y a d d o n s i n t h i s s y s t e m a n d d o l i t t l e t o c h a n g e t h e b a s i c s t r u c t u r e o f h e a l t h c a r e s e r v i c e s ( C h a p p e l l e t a l . , 1 9 8 6 ) . W i l k i n a n d H u g h e s ( i n P h i l l i p s o n & W a l k e r , 1 9 8 6 ) b e l i e v e d i s c u s s i o n o f c o m m u n i t y s e r v i c e s i s o n l y a l i p s e r v i c e b e i n g p a i d t o t h e n e e d f o r f a m i l y s u p p o r t . Th e s t a t e h a s no c o h e r e n t s t r a t e g y f o r c h a n g i n g t h e b a s i c u n d e r l y i n g a s s u m p t i o n s o f a m e d i c a l l y b a s e d s u p p o r t s y s t e m . , T h e s h i f t i n f o c u s t o c o m m u n i t y c a r e c a n a l s o be s e e n t o c o i n c i d e w i t h a t i m e o f e c o n o m i c r e s t r a i n t ( C h a p p e l l e t a l . , 1 9 8 6 ) a n d i s r e a l l y a n a t t e m p t t o f i n d l o w c o s t c a r e o p t i o n s . 31 This connection has been made by other authors. C a r r i l i o and Eisenberg (1983) f e e l that the r h e t o r i c of strengthening f a m i l i e s i s r e a l l y a conservative attempt to s h i f t burden of care to f a m i l i e s without g i v i n g them any support to c a r r y out the r o l e . Brody (1985) s t a t e s her p o s i t i o n even stronger when she says that the " c a l l f or f i l i a l r e s p o n s i b i l i t y masks s o c i a l i r r e s p o n s i b i l i t y " (p. 27). This s h i f t i n g of burden to f a m i l i e s has many hidden costs for both i n d i v i d u a l f a m i l i e s and s o c i e t y (Bader, 1985; C a r r i l i o & Eisenberg, 1983) as e l d e r l y face unmet needs and f a m i l i e s abandon c a r e g i v i n g due to burn-out. What the l i t e r a t u r e seems to say here i s that despite i t s p o t e n t i a l , the formal system has not yet developed a complementary r o l e to the support of informal networks. The mix of i d e o l o g i e s and o b j e c t i v e s undermines attempts to provide community based support to f a m i l i e s . S t i l l , there i s s t i l l a strong p o t e n t i a l for such a supplemental r e l a t i o n s h i p to develop between f a m i l i e s and formal care networks. (Chappell et a l . , 1 9 8 6 ; Litwak, 1985). Litwak (1985) has described the two l e v e l s of o r g a n i z a t i o n and support networks as having d i f f e r e n t s t r u c t u r e s and resources that make them capable and best s u i t e d to meeting d i f f e r e n t kinds of needs. A Canadian report (Government of Canada, 1982) st r e s s e s that the r o l e of government should be to maximize the a b i l i t i e s and resources of i n d i v i d u a l s and f a m i l i e s i n order to f a c i l i t a t e t h e i r a b i l i t y to meet t h e i r own needs and p o t e n t i a l . In order to achieve t h i s kind of r e l a t i o n s h i p between the 32 s t a t e a n d f a m i l i e s , t h e s e p a r a t i o n b e t w e e n h e a l t h a n d s o c i a l s e r v i c e s m u s t be d i s s o l v e d . S u p p o r t s m u s t a d d r e s s h e a l t h , e c o n o m i c a n d s o c i a l n e e d s i n a c o h e r e n t , c o m p r e h e n s i v e s y s t e m o f r e s o u r c e s ( E v a n s , 1 9 8 5 ; G o v e r n m e n t o f C a n a d a , 1 9 8 2 ) . E c o n o m i c a n d s o c i a l p o l i c y m u s t n o t be s e p a r a t e d ( N e y s m i t h , 1 9 8 4 ) . E c o n o m i c f a c t o r s , p r o d u c t i v i t y , r e s o u r c e a n d o p p o r t u n i t y c o s t s a l l h a v e a s i g n i f i c a n t i n f l u e n c e o n t h e a t t i t u d e s t h a t p o l i c y m a k e r s a d o p t t o w a r d s t h e n e e d s o f e l d e r l y a n d t h e r e s o u r c e s t h a t w i l l be made a v a i l a b l e t o t h e m a n d t h e i r f a m i l i e s . C o m m u n i t y b a s e d s e r v i c e p r o g r a m s g e a r e d a t t h e n e e d s o f e l d e r l y p e r s o n s a n d t h e i r c a r e g i v e r s h a v e made some p r o g r e s s towards supporting t h e r o l e of f a m i l i e s i n t h e c a r e g i v i n g r e l a t i o n s h i p . A s o n e t e x t s t a t e d , t h e , " m a i n t e n a n c e o f c o n t i n u i t y a n d p r e s e r v a t i o n o f i n d e p e n d e n c e i s n o t s i m p l y a n i d e a l w i s h e d f o r b y s o c i e t y t o r e l i e v e i t s g u i l t a b o u t t h e p l i g h t a n d n e g l e c t o f t h e e l d e r l y o r t o r e c o v e r f r o m t h e b u r d e n o f s u p p o r t i n g t h e m " ( Q u i n n , H u g h s t o n & H u b l e r i n Q u i n n & H u g h s t o n , 1984> p . 2 1 6 ) . T h e f u t u r e o f a t t e m p t s t o f u r t h e r t h e s e a i m s i s t h e s u b j e c t o f t h e n e x t s e c t i o n . 3. F u t u r e D e v e l o p m e n t a n d t h e G r o w i n g C a r e G a p : Q u r e s h i a n d W a l k e r ( i n P h i l l i p s o n & W a l k e r ) b e l i e v e t h a t t h e f u t u r e w i l l b r i n g a w i d e n i n g o f t h e " c a r e g a p ' a s t h e n e e d s o f e l d e r l y f a m i l i e s i n c r e a s e a n d s t a t e r e s o u r c e s a r e r e d u c e d . O t h e r s f e e l t h a t t h e g r o w t h o f n e e d s a n d a n i n c r e a s i n g b e l i e f i n t h e r i g h t t o s e r v i c e s w i l l b r i n g a b o u t a c h a n g e i n s o c i a l p o l i c y 33 ( N a t u r a l S u p p o r t s P r o g r a m , 1 9 8 1 ) . D e m o g r a p h i c s s u g g e s t t h a t t h e f u t u r e w i l l b r i n g a c o n f l i c t b e t w e e n t h e a g e d p o p u l a t i o n a n d t h e w o r k i n g g e n e r a t i o n s a s e a c h b a t t l e f o r l i m i t e d r e s o u r c e s ( G o v e r n m e n t o f C a n a d a , 1 9 8 2 ; K e r n a g h a n & K u p e r , 1 9 8 3 ) . T h e a g e d w i l l be i n c r e a s i n g l y r e g a r d e d a s b u r d e n s o m e a n d u n p r o d u c t i v e ( B i n n e y & E s t e s , 1 9 8 8 ) . O t h e r a u t h o r s h a v e s u g g e s t e d a d i f f e r e n t i n t e r p r e t a t i o n o f t h e s e s h i f t i n g d e p e n d e n c y r a t i o s t h a t l o o k s t o t h e y o u n g e r g e n e r a t i o n w i t h t h e i r l o w e r b i r t h r a t e s a s t h e c a u s e o f t h e s e s t a t i s t i c s , r a t h e r t h a n t h e a g i n g p o p u l a t i o n ( E v a n s , 1 9 8 5 ; N o v a k , 1 9 8 5 ) . F o c u s i n g o n t h e e l d e r l y a s t h e g r o u p r e s p o n s i b l e f o r r i s i n g h e a l t h c o s t s a n d p u b l i c d e f i c i t i s a k i n d o f b l a m i n g t h e v i c t i m ( B i n n e y & E s t e s , 1 9 8 8 ) . E v a n s ( 1 9 8 5 ) a r g u e s t h a t i n c r e a s e d s e r v i c e c o s t s a r e d u e t o c o n s c i o u s a n d d e l i b e r a t e c h o i c e s t h a t a r e made w i t h i n t h e h e a l t h c a r e s y s t e m a n d a r e n o t t h e f u n c t i o n o f u n c o n t r o l l a b l e f a c t o r s . I n a s y s t e m t h a t m e d i c a l i z e s p r o b l e m s a n d m a k e s t h e m a s o u r c e o f c o r p o r a t e p r o f i t ( N o v a k , 1 9 8 5 ) a b i a s e x i s t s t o w a r d s e x p e n s i v e c a r e a n d i n s t i t u t i o n a l s e r v i c e s . C a r r i l i o a n d E i s e n b e r g ( 1 9 8 3 ) a s s e r t t h a t t h i s a r t i f i c i a l c o n f l i c t b e t w e e n g e n e r a t i o n s a n d c o m p e t i t i o n f o r a p p a r e n t s c a r c e r e s o u r c e s d e f l e c t s a t t e n t i o n a w a y f r o m s t a t e r e s p o n s i b i l i t y f o r s e r v i c e p r o v i s i o n . T h e g r o w t h o f p r i v a t e s e r v i c e s a n d t h e move t o p r i v a t i z e m a n y g o v e r n m e n t s e r v i c e s w i l l h a v e a n e g a t i v e i m p a c t o n t h e e l d e r l y . P r o f i t b a s e d s e r v i c e s w i l l f u r t h e r t h e f o c u s o f r e s o u r c e s o n t h e a c u t e n e e d s o f a y o u n g e r p r o d u c t i v e 34 p o p u l a t i o n ( W i l k i n & Hughes in P h i l l i p s o n & Walker, 1986). The absence of any s t r o n g lobby group i n Canada makes i t d i f f i c u l t for o l d e r generations to a s s e r t t h e i r r i g h t to s e r v i c e (Government of Canada, 1982). Despite the great d i v e r s i t y of t h i s p o p u l a t i o n , they have begun to show i n c r e a s i n g p o l i t i c a l i n f l u e n c e when threatened with a c t i o n such as the de-indexing of p u b l i c pensions. The needs of the e l d e r l y are o f t e n c h r o n i c and r e q u i r e long term p l a n n i n g . I t i s important t h a t s t a t i s t i c s t h a t support continued f a m i l y involvement not be used to j u s t i f y non-a c t i o n on the part of government (Koff, 1982). P o l i c i e s t h at c a l l f o r i n c r e a s i n g f a m i l y care o f t e n r e s u l t i n i n c r e a s i n g the r e s p o n s i b i l i t y of women and e x p l o i t i n g the g u i l t and duty a l r e a d y faced by many c a r e g i v e r s (Binney & E s t e s , 1988; Brody, 1981; Quershi & Walker i n P h i l l i p s o n & Walker, -1986 ). I t i s important that p o l i c y makers and s e r v i c e p r o v i d e r s r e a l i z e t h at the s t r e n g t h of f a m i l i e s cannot be i n c r e a s e d by i n c r e a s i n g the burden t h a t they must shoulder ( C a r r i l i o & E i s e n b e r g , 1983). The f u t u r e p o t e n t i a l f o r the development of a p p r o p r i a t e and supplemental s e r v i c e s that serve to support f a m i l y c a r e g i v i n g r e q u i r e s a b e t t e r a p p r e c i a t i o n and understanding of the r o l e , b e n e f i t s and l i m i t a t i o n s of t h i s support network. Respit e Care S e r v i c e s as a Family Support Respi t e care s e r v i c e s c o n s t i t u t e one of the few d i r e c t attempts to provide f a m i l y support fo r c a r e g i v i n g and bridge the 35 g a p b e t w e e n f o r m a l a n d i n f o r m a l c a r e s e r v i c e s . T o d a t e , t h e r e h a s b e e n l i m i t e d r e s e a r c h o n t h e n e e d s a n d o u t c o m e s a s s o c i a t e d w i t h s u c h p r o g r a m s . A l l e n ( 1 9 8 3 ) c o n d u c t e d a c o m p r e h e n s i v e s t u d y o f r e s p i t e s e r v i c e s i n B r i t a i n . S h e a d d r e s s e d n e e d s , u t i l i z a t i o n a n d o u t c o m e s o f a n u m b e r o f i n s t i t u t i o n a l a n d r e s i d e n t i a l r e s p i t e p r o g r a m s f r o m a v a r i e t y o f v i e w p o i n t s i n c l u d i n g p r o f e s s i o n a l s , c l i e n t s , a n d c a r e g i v e r s . T h e F o u n d a t i o n f o r L o n g T e r m C a r e i n New Y o r k ( 1 9 8 3 ) h a s a l s o p r o d u c e d a r e p o r t t h a t e x a m i n e s r e s p i t e a t a n u m b e r o f s i t e s i n t h e s t a t e . T h e s e t w o r e p o r t s d i s c u s s r e s p i t e a s i t a p p l i e s t o i n s t i t u t i o n a l b a s e d s e r v i c e s o n l y . A s w e l l , t h e B r i t i s h a n d A m e r i c a n h e a l t h c a r e s y s t e m s d i f f e r f r o m t h e C a n a d i a n m o d e l a n d t h i s l i m i t s a n y g e n e r a l i z a t i o n s t h a t c a n be made f r o m t h e i r f i n d i n g s t o t h e C a n a d i a n e x p e r i e n c e . M u c h o f t h e o t h e r p u b l i s h e d r e s e a r c h i n t h e a r e a o f r e s p i t e h a s f o c u s e d o n q u a n t i t a t i v e o u t c o m e m e a s u r e s o f s m a l l s c a l e o r i s o l a t e d p r o g r a m s . W h i l e some s t u d i e s h a v e l o o k e d a t r e s p i t e p r o g r a m s t h a t i n c l u d e i n s t i t u t i o n a l , d a y c a r e a n d i n - h o m e s e r v i c e s ( C a s e r t a , L u n d , W r i g h t & R e d b u r n , 1 9 8 7 ; K i r b y & K a y , 1 9 8 7 ; S p e n c e & M i l l e r , 8 5 - 8 6 ) m o s t h a v e f o c u s e d o n i n s t i t u t i o n a l b a s e d r e s p i t e o n l y ( A l l e n , 1 9 8 3 ; B e r m a n , D e l a n e y , G a l l a g h e r , A t k i n s & G r a e b e r , 1 9 8 7 ; C o u r t n e y , 1 9 8 6 ; F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ; S c h a r l a c h & F r e n z e l , 1 9 8 6 ; S e l t z e r , R h e a u m e , V o l i c e r , F a b i s z e w s k i , L y o n , B r o w n & V o l i c e r , 1 9 8 8 ) . 36 1. O b j e c t i v e s o f R e s p i t e : T h e r e s e a r c h t h a t d o e s e x i s t i d e n t i f i e s s e v e r a l p u r p o s e s a n d o b j e c t i v e s f o r s u c h p r o g r a m s . D e l u c y , G a l l e & M c C u e ( 1 9 8 6 ) d e f i n e r e s p i t e a s , " t e m p o r a r y c a r e o f f r a i l e l d e r l y a n d d i s a b l e d t o p e r m i t f a m i l y c a r e g i v e r s t o r e l i n q u i s h t h e i r d u t i e s , s t r e s s a n d r e s p o n s i b i l i t i e s f o r t i m e - l i m i t e d p e r i o d s t o m a i n t a i n t h e i r p h y s i c a l a n d e m o t i o n a l s t r e n g t h " , ( p . 4 6 7 ) B y p r o v i d i n g r e l i e f f o r t h e c a r e g i v e r s , r e s p i t e m a x i m i z e s f o r m a l r e s o u r c e s . M a n y p r o g r a m s a r e d e v e l o p e d i n t h e h o p e t h a t t h e y w i l l d e l a y o r p r e v e n t i n s t i t u t i o n a l i z a t i o n ( A l l e n , 1 9 8 3 ; B e r m a n e t a l . , 1 9 8 7 ; B r a d e r , 1 9 8 5 ; F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ) a n d i m p r o v e t h e q u a l i t y o f c a r e t h a t t h e f a m i l y c a r e g i v e r i s a b l e t o p r o v i d e i n t h e home ( S c h a r l a c h & F r e n z e l , 1 9 8 6 ) . S p e n c e a n d M i l l e r ( 1 9 8 5 - 8 6 ) h a v e i d e n t i f i e d t h e d i f f i c u l t y p o l i c y a n d p r o g r a m d e s i g n e r s f a c e i n c o n c e p t u a l i z i n g w h a t r e s p i t e i s o r s h o u l d b e . R e s p i t e i s a s e r v i c e t h a t i s d i r e c t e d a t t h e f a m i l y , n o t i n d i v i d u a l h e a l t h n e e d s . U n l i k e m o s t w e l f a r e o r h e a l t h c a r e s e r v i c e s , r e s p i t e i s d i r e c t e d a t t h e a b l e - b o d i e d p e r s o n . O t h e r a u t h o r s h a v e a l s o i d e n t i f i e d t h i s d i l e m m a a n d how r e s p i t e c a r e s e r v i c e s h a v e o f t e n b e c o m e d e f i n e d a s a n i n d i r e c t i n t e r v e n t i o n o n b e h a l f o f t h e i d e n t i f i e d c l i e n t . " R e s p i t e c a r e e x p l i c i t l y r e c o g n i z e s t h a t t h e n e e d s o f d i s a b l e d i n d i v i d u a l s c a n o f t e n be m e t m o s t e f f e c t i v e l y b y p r o v i d i n g s u p p o r t f o r t h e i r c a r e g i v e r s . " ( S c h a r l a c h & F r e n z e l , 1 9 8 6 , p . 8 1 ) . 37 S c a r l a c h a n d F r e n z e l ( 1 9 8 6 ) g o o n t o i d e n t i f y t h e r o l e t h a t r e s p i t e p l a y s i n d e v e l o p i n g a n i n t e g r a t e d a n d c o m p l e m e n t a r y r e l a t i o n s h i p b e t w e e n f o r m a l a n d i n f o r m a l s u p p o r t s . " I n t h i s w a y , r e s p i t e c a r e s e r v i c e s r e i n f o r c e a n d b u i l d u p o n t h e e x i s t i n g s t r e n g t h s o f t h e n a t u r a l s u p p o r t s y s t e m a n d t h e r e b y p r o m o t e a m u c h n e e d e d i n t e r f a c e b e t w e e n f o r m a l a n d i n f o r m a l p r o v i d e r s o f c a r e w h i l e i m p l i c i t l y r e c o g n i z i n g t h e i m p o s s i b i l i t y o f s e p a r a t i n g s o c i a l a n d h e a l t h . r e l a t e d n e e d s o f l o n g t e r m c a r e . " ( p . 8 1 ) 2. I d e n t i f i e d N e e d f o r R e s p i t e : I n h e r s t u d y , A l l e n ( 1 9 8 3 ) i d e n t i f i e d t h e t e n d e n c y o f many r e s p i t e p r o g r a m s t o be e s t a b l i s h e d o n t h e b a s i s o f a s e t o f a s s u m p t i o n s t h a t s u c h s u p p o r t p r o g r a m s w o u l d n e c e s s a r i l y b e a x g o o d t h i n g ' . T h e p r e s s u r e t o p r o v i d e c o s t e f f e c t i v e s e r v i c e a n d t o m a x i m i z e c o m m u n i t y u s e o f l i m i t e d s t a t e r e s o u r c e s , h a s r e s u l t e d i n a s i t u a t i o n w h e r e r e s p i t e p r o g r a m s h a v e b e e n e s t a b l i s h e d w i t h o u t e x t e n s i v e n e e d s a s s e s s m e n t s o r r e s e a r c h o n o b j e c t i v e s . I n a n e a r l i e r s e c t i o n o f t h i s c h a p t e r , t h e b u r d e n a n d s t r e s s f a c e d b y c a r e g i v e r s w a s d o c u m e n t e d . I n r e s p o n s e t o t h i s r e a l i z a t i o n o f t h e i n v o l v e m e n t t h a t f a m i l i e s h a v e i n c a r e g i v i n g , r e s p i t e p r o g r a m s h a v e b e e n e s t a b l i s h e d . H o w e v e r , i t i s n o t a l w a y s c l e a r w h o s e n e e d s a r e b e i n g a d d r e s s e d ( i e . b u d g e t n e e d s , c a r e g i v e r o r c l i e n t n e e d s ) a n d w h a t t h e h o p e d f o r o u t c o m e s a r e . M o s t o f t h e s t u d i e s o n r e s p i t e c a r e h a v e i d e n t i f i e d t h e i m p o r t a n c e o f a s s e s s i n g t h e c a r e g i v e r s ' n e e d s a n d p r o v i d i n g 38 s e r v i c e s t h a t w i l l r e l i e v e t h e s t r e s s a n d b u r d e n f a c e d b y t h e s e c a r e g i v e r s ( A l l e n , 1 9 8 3 ; C r o s s m a n e t a l . , 1 9 8 1 ; S c h a r l a c h & F r e n z e l , 1 9 8 6 ; Z a r i t , R e e v e r & B a c h P e t e r s o n , 1 9 8 0 ) . T h e c a r e g i v e r s ' p e r c e p t i o n s o f t h e i r s i t u a t i o n a s w e l l a s o b j e c t i v e i n d i c a t o r s o f r e s p o n s i b i l i t y w e r e s e e n a s i m p o r t a n t i n a s s e s s i n g n e e d . ( C r o s s m a n e t a l . , 1 9 8 1 ; F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ) T h e f a c t t h a t many c a r e g i v e r s a r e women a n d f a c e c e r t a i n s t r e s s e s a n d r o l e e x p e c t a t i o n s r e l a t e d t o t h e i r g e n d e r ( B a d e r , 1 9 8 5 ; S c h a r l a c h & F r e n z e l , 1 9 8 6 ; Z a r i t e t a l . , 1 9 8 0 ) a r e o t h e r i m p o r t a n t f a c t o r s i n u n d e r s t a n d i n g t h e n e e d f o r r e s p i t e c a r e s e r v i c e s . T h e n e e d f o r some k i n d o f r e l i e f f r o m t h e c o n s t a n t b u r d e n f a c e d b y c a r e g i v e r s was f o u n d t o b e p r o m i n e n t i n m o s t o f t h e s t u d y s a m p l e s ( B e r m a n e t a l . , 1 9 8 7 ; C r o s s m a n e t a l . , 1 9 8 1 ) . B e r m a n e t a l . ( 1 9 8 7 ) f o u n d t h a t t h e c a r e g i v e r ' s l a c k o f r e l i e f f r o m c o n s t a n t b u r d e n was t h e m o s t common c a u s e o f i n s t i t u t i o n a l p l a c e m e n t . Z a r i t a n d a s s o c i a t e s ( 1 9 8 0 ) f o u n d t h a t t h e b u r d e n o f t h e c a r e g i v e r was r e l a t e d m o r e t o s o c i a l s u p p o r t s t h a n t h e c l i e n t ' s b e h a v i o r a n d t h e d u r a t i o n o f c a r e . I t was f e l t t h a t r e s p i t e was n e e d e d t o e x p a n d t h e s u p p o r t n e t w o r k o f t h e c a r e g i v e r . I n a s t u d y o f u s e r s o f r e s p i t e i n V a n c o u v e r , B.C., C o u r t n e y ( 1 9 8 6 ) f o u n d t h a t m e n t a l s t r a i n , p h y s i c a l s t r a i n a n d t h e i n f l u e n c e o f s u p p o r t n e t w o r k s w e r e t h e m o s t i m p o r t a n t f a c t o r s t h a t l e d t o t h e n e e d t o u s e r e s p i t e . A l o n g w i t h t i m e a w a y f r o m c a r e g i v i n g r e s p o n s i b i l i t i e s , some a u t h o r s f e l t t h a t r e s p i t e s h o u l d i n c o r p o r a t e e m o t i o n a l s u p p o r t a n d c o u n s e l l i n g 39 ( B a d e r , 1 9 8 5 ; K i r b y & K a y . 1 9 8 7 ) . W h i l e t h e d i s c u s s i o n o f r e s p i t e n e e d s h a s f o c u s e d p r i m a r i l y o n t h e c a r e g i v e r , t h e c a r e r e c e i v e r ' s n e e d s h a v e a l s o b e e m i d e n t i f i e d a s i m p o r t a n t . C a r e r e c e i v e r s may h a v e m u l t i p l e m e d i c a l a n d c a r e n e e d s t h a t c a n i n c l u d e d e m e n t i a . T h e s e f a c t o r s c o m p l i c a t e t h e c a r e g i v i n g s i t u a t i o n ( B a d e r , 1 9 8 5 ) . S p e n c e a n d M i l l e r ( 8 5 - 8 6 ) c o n c l u d e d t h a t i t was i m p o r t a n t t o a s s e s s t h e n e e d s o f t h e c l i e n t i n d e t e r m i n i n g i f r e s p i t e w o u l d be b e n e f i c i a l t o t h e f a m i l y c a r e g i v i n g s i t u a t i o n . A l l e n ( 1 9 8 3 ) f o u n d t h a t p o s s i b l e n e g a t i v e o u t c o m e s o f r e s p i t e p l a c e m e n t n e e d e d t o be w e i g h e d a g a i n s t t h e b e n e f i t s t o t h e c a r e g i v e r i n a s s e s s i n g n e e d a n d a p p r o p r i a t e n e s s o f r e s p i t e c a r e . I t may be p o s s i b l e f o r b o t h t h e c l i e n t a n d c a r e g i v e r t o b e n e f i t f r o m r e s p i t e t h e r e f o r e b o t h t h e i n d i v i d u a l s a s w e l l a s t h e i r r e l a t i o n s h i p m u s t be p a r t o f s e r v i c e p l a n n i n g ( K i r b y & K a y , 1 9 8 7 ) . 3. O u t c o m e s o f R e s p i t e P r o g r a m s : T h e p r o g r a m e v a l u a t i o n a n d o u t c o m e s t u d i e s r e v e a l e d b o t h e x p e c t e d a n d s u r p r i s i n g r e s u l t s . S c h a r l a c h a n d F r e n z e l , ( 1 9 8 6 ) i n t h e i r s t u d y o f a v e t e r a n s r e s p i t e p r o g r a m i n C a l i f o r n i a f o u n d i m p r o v e d p h y s i c a l a n d m e n t a l h e a l t h , b e t t e r r e l a t i o n s h i p s w i t h t h e c a r e r e c e i v e r a n d i n c r e a s e d c o n f i d e n c e t o c o n t i n u e a s c a r e g i v e r a f t e r t h e u s e o f i n s t i t u t i o n a l r e s p i t e . T h e y f o u n d t h a t t h e i m p a c t o n m o r a l e was g r e a t e r t h a n p h y s i c a l n e e d s . K i r w i n ( 1 9 8 5 - 8 6 ) c o n c l u d e d t h a t a d u l t d a y c a r e b e n e f i t e d f a m i l i e s b y p r o v i d i n g b o t h r e l i e f a n d a l i n k w i t h f o r m a l 40 s e r v i c e s . G e n e r a l l y , m o s t s t u d i e s r e p o r t e d s h o r t t e r m b e n e f i t s f o r t h e c a r e g i v e r ( A l l e n , 1 9 8 3 ; S p e n c e & M i l l e r , 1 9 8 5 - 8 6 ) a l t h o u g h t h e r e w e r e s o m e t i m e s n e u t r a l o r n e g a t i v e o u t c o m e s r e p o r t e d f o r t h e c a r e r e c e i v e r s u c h a s i n c r e a s e d c o n f u s i o n ( A l l e n , 1 9 8 3 ; F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ; S e l t z e r e t a l . , 1 9 8 8 ) . C o u r t n e y ( 1 9 8 6 ) i n h e r s t u d y o f how r e s p i t e c a r e met t h e n e e d s o f c a r e g i v e r s , f o u n d t h a t n e e d s w e r e m e t o n l y d u r i n g t h e c a r e e p i s o d e a n d t h a t t h e r e was l i m i t e d c a r r y o v e r o n c e t h e c a r e g i v i n g r e s p o n s i b i l i t i e s r e s u m e d . T h e r e l i e f a n d s u p p o r t was n o t s e e n t o h a v e a l a s t i n g e f f e c t . C o n t r a r y t o t h e o b j e c t i v e o f d e l a y i n g i n s t i t u t i o n a l i z a t i o n , s e v e r a l s t u d i e s f o u n d t h a t u s e r s o f r e s p i t e b e c a m e m o r e r e c e p t i v e t o i n s t i t u t i o n a l i z a t i o n . R e s p i t e s e e m e d t o h a v e t h e e f f e c t o f a c t i n g a s a t r a n s i t i o n t o m o r e p e r m a n e n t i n s t i t u t i o n a l i z a t i o n ( A l l e n , 1 9 8 3 ; C o u r t n e y , 1 9 8 6 ; F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ; S c h a r l a c h & F r e n z e l , 1 9 8 6 ) a s f a m i l i e s w e r e a b l e t o b e c o m e m o r e f a m i l i a r w i t h i n s t i t u t i o n a l l i f e a n d w e r e g i v e n t i m e a n d o p p o r t u n i t y t o r e - e v a l u a t e t h e i r r o l e a n d f u t u r e a s c a r e g i v e r s . A l t h o u g h n o t p r e v e n t i n g i n s t i t u t i o n a l i z a t i o n , t h e r e i s some s p e c u l a t i o n t h a t t h e r e l i e f t h a t r e s p i t e o f f e r s may r e l i e v e s t r e s s a n d p r e v e n t t h e d e v e l o p m e n t o f a b u s i v e o r d y s f u n c t i o n a l c a r e g i v i n g r e l a t i o n s h i p s ( A l l e n , 1 9 8 3 ; F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ) . T h e s e l i m i t e d s t u d i e s o f r e s p i t e p o i n t t o t h e n e e d t o h a v e 41 a f l e x i b l e a n d w i d e r a n g e o f s e r v i c e s a v a i l a b l e t o p r o v i d e p h y s i c a l , e m o t i o n a l a n d s o c i a l r e l i e f f o r c a r e g i v i n g f a m i l i e s ( B a d e r , 1 9 8 5 ; K i r b y & K a y , 1 9 8 7 ; Z a r i t e t a l . , 1 9 8 0 ) . R e s p i t e m u s t i n t e g r a t e t h e n e e d s o f t h e c a r e g i v e r i n t o t h e s y s t e m o f l o n g t e r m c a r e s u p p o r t s ( S c h a r l a c h & F r e n z e l , 1 9 8 6 ) . T h e s e r v i c e n e e d s t o be f l e x i b l e a n d a b l e t o r e s p o n d t o e m e r g e n c y a n d c h a n g i n g c i r c u m s t a n c e s o f t h e e l d e r l y ( M u r d e n & F a r o , 1 9 8 7 ) . A c c e s s i b i l i t y a n d a w a r e n e s s o f s e r v i c e o p t i o n s m u s t be i n c r e a s e d f o r c a r e g i v e r s ( C a s e r t a , L u n d , W r i g h t & R e d b u r n , 1 9 8 7 ; C o u r t n e y , 1 9 8 6 ) . A l l e n ( 1 9 8 3 ) i d e n t i f i e d t h e b e n e f i t s o f h a v i n g f r e e s t a n d i n g r e s p i t e f a c i l i t i e s t h a t a r e s p e c i f i c a l l y g e a r e d t o t h e n e e d s o f s h o r t s t a y r e s p i t e c l i e n t s . W i t h i n l a r g e r l o n g s t a y f a c i l i t i e s t h e n e e d s o f s h o r t s t a y c l i e n t s may be g i v e n l o w p r i o r i t y b y s t a f f who h a v e l i m i t e d t i m e t o a s s e s s a n d r e s p o n d t o t h e u n i q u e s i t u a t i o n o f a r e s p i t e c l i e n t s u r r o u n d e d b y m o r e p e r m a n e n t l y i n s t i t u t i o n a l i z e d e l d e r l y . S t a f f s h o u l d be s e n s i t i v e t o t h e n e e d s o f s h o r t s t a y c l i e n t s ( F o u n d a t i o n f o r L o n g T e r m C a r e , 1 9 8 3 ) . R e s p i t e n e e d s t o i n c o r p o r a t e m o r e t h a n j u s t s h o r t s t a y i n s t i t u t i o n a l p l a c e m e n t s . A c o m p r e h e n s i v e s y s t e m o f f a c i l i t y , d a y c a r e , a n d i n home r e s p i t e w o u l d p r o v i d e t h e o p p o r t u n i t y f o r f a m i l i e s t o a c c e s s a v a r i e t y o f s e r v i c e s t o s u i t t h e i r n e e d s . 42 Summary This l i t e r a t u r e review has focused on three areas: the r o l e of the caregiver and c a r e g i v i n g r e l a t i o n s h i p ; the r o l e of the s t a t e and s o c i a l p o l i c i e s i n developing supportive and complementary s e r v i c e s ; and research f i n d i n g s r e l a t e d to r e s p i t e care s e r v i c e s . Respite care s e r v i c e s are a r e l a t i v e l y new phenomena and research on such programs i s s t i l l at an e a r l y stage. In order to understand the r o l e and p o t e n t i a l f or r e s p i t e care, i t was necessary to examine the s o c i a l and p o l i t i c a l contexts w i t h i n which such s e r v i c e s are developing. I t was found that f a m i l i e s continue to remain h i g h l y involved i n the care of e l d e r l y persons despite high s t r e s s l e v e l s , competing demands and l i m i t e d personal resources. Without some form of support and a s s i s t a n c e , many c a r e g i v i n g f a m i l i e s are at r i s k of breakdown and face a loss of c o n t r o l over t h e i r f a m i l y and personal l i v e s . Services that are a v a i l a b l e have developed w i t h i n the healt h care system. Despite attempts to recognize f a m i l y involvement and s h i f t to community based s e r v i c e s , values of personal r e s p o n s i b i l i t y , f a m i l y autonomy and a medical model of s e r v i c e p r o v i s i o n have continued to shape the content and d e l i v e r y of many of these s e r v i c e s . This review has i d e n t i f i e d the f a i l u r e of the formal system to develop a supplemental r o l e to f a m i l y c a r e g i v i n g . Respite care s e r v i c e s , the focus of t h i s study, were found to be often based on inadequate research or understanding of caregiver and f a m i l y needs. While r e s p i t e care o f f e r s an a t t e m p t t o s u p p o r t f a m i l y c a r e g i v i n g e f f o r t s a n d b u i l d a m o r e c o m p l e m e n t a r y r e l a t i o n s h i p b e t w e e n f o r m a l a n d i n f o r m a l c a r e , i t s p o t e n t i a l i s l i m i t e d b y t h e s e g a p s i n k n o w l e d g e . I t i s n o t a c c e p t a b l e t h a t s u c h a n i m p o r t a n t a r e a o f s e r v i c e be d e v e l o p e d o n t h e b a s i s o f a s s u m p t i o n s a b o u t n e e d a n d w h a t c o n s t i t u t e s a p p r o p r i a t e s e r v i c e s o b j e c t i v e s a n d d e l i v e r y . T h i s s t u d y , a s w i l l be o u t l i n e d i n t h e n e x t c h a p t e r , t a k e s a n e x p l o r a t o r y , g r o u n d e d t h e o r y a p p r o e i c h t o d e v e l o p i n g a c o n c e p t u a l i z a t i o n o f n e e d f o r c a r e g i v e r s u p p o r t a n d r e s p i t e . T h e p o t e n t i a l f o r f u t u r e c o n f l i c t a n d c o m p e t i t i o n o v e r s c a r c e r e s o u r c e s a n d t h e g r o w t h o f a c a r e g a p a s o u r p o p u l a t i o n a g e s , d e m a n d t h a t r e s e a r c h e r s a n d p o l i c y m a k e r s t a k e a new a n d f r e s h l o o k a t t h e w a y we u n d e r s t a n d c a r e n e e d s a n d t h e w a y i n w h i c h s e r v i c e s a r e d e l i v e r e d . 44 CHAPTER 3 METHODOLOGY T h i s c h a p t e r p r o v i d e s a d e s c r i p t i o n o f t h e m e t h o d o l o g y f o l l o w e d i n t h i s s t u d y . A q u a l i t a t i v e , g r o u n d e d t h e o r y a p p r o a c h was u s e d i n a n a t t e m p t t o b u i l d s u b s t a n t i v e t h e o r y r e l a t i n g t o t h e n e e d f o r r e s p i t e c a r e s e r v i c e s f o r t h e e l d e r l y a n d o b j e c t i v e s f o r s u c h s e r v i c e s . R a t i o n a l e f o r Q u a l i t a t i v e A p p r o a c h T h e a r e a o f r e s p i t e c a r e s e r v i c e s f o r t h e e l d e r l y a n d t h e i r f a m i l i e s i s a r e l a t i v e l y new u n d e r t a k i n g w i t h i n h e a l t h c a r e p r o g r a m s . R e s e a r c h t o d a t e h a s b e e n r e l a t i v e l y s p a r s e a s e a r l i e r c h a p t e r s h a v e n o t e d . C a n a d i a n r e s e a r c h h a s f o c u s e d o n s m a l l s c a l e , q u a n t i t a t i v e o u t c o m e s t u d i e s . V e r y l i t t l e p u b l i s h e d w o r k a d d r e s s e s t h e i s s u e o f " n e e d ' i n t h e c o m m u n i t y t h r o u g h s u b s t a n t i a t i n g r e s e a r c h o r p r o v i d e s d a t a f o r e s t a b l i s h i n g o b j e c t i v e s f o r s u c h s e r v i c e s . U n d e r s t a n d i n g o r e v a l u a t i n g r e s p i t e s e r v i c e s i n a q u a n t i t a t i v e m a n n e r i s v e r y d i f f i c u l t a n d i m p r a c t i c a l w hen y o u c o n s i d e r t h a t t h e s a l i e n t v a r i a b l e s a r e n o t k n o w n . T h e b e g i n n i n g p o i n t f o r r e s e a r c h i n t h i s a r e a a s i n o t h e r new s e r v i c e a r e a s m u s t be w i t h t h e e s t a b l i s h m e n t a g r o u n d e d u n d e r s t a n d i n g o f w h a t c o n s t i t u t e s ' n e e d ' f o r s u c h a s e r r v i c e . F r o m t h i s b a s i s , t h e r e s e a r c h e r c a n f o r m u l a t e h y p o t h e s e s c o n c e r n i n g a p p r o p r i a t e s e r v i c e o b j e c t i v e s a n d i n t e r v e n t i o n s b e s t s u i t e d t o m e e t i n g t h e s e n e e d s . 45 A q u a l i t a t i v e g r o u n d e d t h e o r y a p p r o a c h a t t e m p t s t o g e n e r a t e , n o t v e r i f y , t h e o r y ( G l a s e r & S t r a u s s , 1 9 6 7 ) . Q u a l i t a t i v e d a t a i s r i c h i n d e p t h a n d d e t a i l . I t a t t e m p t s t o u n d e r s t a n d p e o p l e i n t h e i r own t e r m s t h r o u g h r e c o r d i n g t h e i r a c t i o n s a n d w o r d s . T h e m e t h o d i s b o t h h o l i s t i c a n d i n d u c t i v e ( P a t t o n , 1 9 8 0 ) . F o l l o w i n g t h i s a p p r o a c h , t h e r e s e a r c h e r c o l l e c t s , c o d e s , a n d a n a l y z e s d a t a s i m u l t a n e o u s l y . He o r s h e c o n c e p t u a l i z e s a n d f o r m u l a t e s t h e o r y a s i t e m e r g e s f r o m t h e d a t a ( G l a s e r & S t r a u s s , 1 9 6 7 ) . T h e b e n e f i t s o f t h i s a p p r o a c h a r e v a r i e d . I t a l l o w s t h e r e s e a r c h e r t o s t u d y a p h e n o m e n a f r o m t h e p o i n t o f v i e w o f t h e p a r t i c i p a n t s . T h r o u g h t h e s i m u l t a n e o u s c o l l e c t i o n , c o d i n g a n d a n a l y s i s o f d a t a , o n e i s a l e r t t o new i n f o r m a t i o n a n d new w a y s o f p e r c e i v i n g t h e p h e n o m e n a u n d e r s t u d y . R e s p o n d e n t s a r e g i v e n o p e n - e n d e d o p p o r t u n i t i e s t o e x p r e s s t h e i r o p i n i o n s a n d r e l a t e t h e i r p e r c e p t i o n s o f t h e s i t u a t i o n . D a t a a r e n o t f o r c e d i n t o p r e d e t e r m i n e d c a t e g o r i e s o r s h a p e d b y e x i s t i n g p o i n t s o f v i e w . M i l e s a n d H u b e r m a n ( 1 9 8 4 ) s t a t e : " Q u a l i t a t i v e d a t a a r e m o r e l i k e l y t o l e a d t o s e r e n d i p i t o u s f i n d i n g s a n d t o new t h e o r e t i c a l i n t e g r a t i o n s ; t h e y h e l p r e s e a r c h e r s g o b e y o n d i n i t i a l p r e c o n c e p t i o n s a n d f r a m e w o r k s ( p . 1 5 ) . T h i s s t u d y was n o t a i m e d a t e s t a b l i s h i n g a c c o u n t a b i l i t y o r v e r i f y i n g e f f e c t i v e n e s s o f a r e s p i t e s e r v i c e . I t was a i m e d a t e s t a b l i s h i n g a b e g i n n i n g c o n c e p t u a l i z a t i o n o f w h a t c o n s t i t u t e s n e e d f o r r e s p i t e c a r e a n d d e v e l o p i n g h y p o t h e s e s a b o u t how t h a t 46 need may best be addressed. Sample S e l e c t i o n This s e c t i o n addresses the c r i t e r i a and procedures involved i n the sample s e l e c t i o n s for t h i s study. Two groups were studied i n t h i s research p r o j e c t . The perception of need and c r i t e r i a used to evaluate e f f e c t i v e n e s s can vary according to one's p o s i t i o n i n the process ( A l l e n , 1983). Whether one's viewpoint i s that of an a d m i n i s t r a t o r , gatekeeper, c l i e n t , or c a r e g i v e r , how need i s seen and what kind of s e r v i c e s are f e l t to be appropriate or necessary may vary. I t i s t h e r e f o r e important to consider m u l t i p l e viewpoints i n developing a h o l i s t i c understanding of the concept. Time r e s t r a i n t s l i m i t e d the number of perspectives to be studied i n t h i s p r o j e c t to two. When loo k i n g at the issue of need for r e s p i t e s e r v i c e s , the fa m i l y c a r e g i v e r ' s viewpoint i s e s s e n t i a l . Unlike many other h e a l t h care s e r v i c e s , r e s p i t e care i s targeted at the ' w e l l ' f a m i l y member. E x i s t i n g o b j e c t i v e s and sta t e d purposes of r e s p i t e s e r v i c e s i d e n t i f y the caregiver as the major r e c i p i e n t of b e n e f i t s . As the consumer of the s e r v i c e , t h e i r perspective i s key to understanding community need f o r r e s p i t e . I t i s the c a r e g i v e r s ' needs that the program has been designed to meet. LTC case managers as r e f e r r a l agents a l s o have an important r o l e i n the i n t e r p r e t a t i o n of need for s e r v i c e s . I t i s these people who c o n t r o l much of the information d i s p e r s a l and access 4 7 t o p r o g r a m s . F a m i l i e s a c c e s s s e r v i c e s t h r o u g h t h e s e ' g a t e k e e p e r s ' . R e g a r d l e s s o f w h a t p o l i c y m a n u a l s may s a y , i t i s t h e s e g a t e k e e p e r s t h a t d e t e r m i n e how t h e s e r v i c e i s c a r r i e d o u t a n d who i t r e a c h e s ( A l l e n , 1 9 8 3 ) . T h e y c o n s t i t u t e t h e i n t e r f a c e b e t w e e n n e e d a n d s e r v i c e a n d t h e r e f o r e b e c o m e a n i m p o r t a n t p l a c e t o e n t e r t h e L T C s y s t e m i n r e s e a r c h . I t was d e c i d e d t o f o c u s t h e r e s e a r c h o n t h e s e t w o g r o u p s , f a m i l y c a r e g i v e r s a n d L o n g T e r m C a r e C a s e M a n a g e r s . G i v e n t h e d e s i g n a n d p u r p o s e o f t h i s s t u d y , i t was n e c e s s a r y t o k e e p t h e s a m p l e s i z e s r e l a t i v e l y s m a l l t o e n a b l e t h e c o l l e c t i o n o f d e t a i l e d q u a l i t a t i v e d a t a . I n a q u a l i t a t i v e , g r o u n d e d r e s e a r c h p r o j e c t , t h e p u r p o s e i s n o t t o e s t a b l i s h g e n e r a l i z a b l e f i n d i n g s , b u t t o e x p l o r e i n d e p t h t h e v a r i a t i o n a n d s c o p e o f p e r c e p t i o n s o f t h e s e t w o g r o u p s . 1. C a s e M a n a g e r s : C r i t e r i a : A s a m p l e s i z e o f t e n was d e c i d e d u p o n . A l t h o u g h t h e o r i g i n a l i n t e n t i o n was t o r a n d o m l y s a m p l e t h e s e t e n f r o m a c r o s s t h e c i t y , t i m e a n d a d m i n i s t r a t i v e c o n s i d e r a t i o n s r e s u l t e d i n t h e s a m p l e b e i n g c o n f i n e d t o c a s e m a n a g e r s i n t w o h e a l t h u n i t s . Of t h e t e n a p p r o a c h e d , n i n e a g r e e d t o p a r t i c i p a t e i n t h e s t u d y . S e l e c t i o n P r o c e d u r e : A p p r o v a l was s o u g h t f r o m C o n t i n u i n g C a r e a d m i n i s t r a t o r s , t h e h e a l t h u n i t a d m i n i s t r a t o r a n d t h e L o n g T e r m C a r e C o -o r d i n a t o r s i n e a c h o f f i c e . T h e r e s e a r c h e r t h e n a t t e n d e d s t a f f m e e t i n g s a t e a c h u n i t t o p r e s e n t t h e r e s e a r c h p r o p o s a l a n d 48 a n s w e r q u e s t i o n s t h a t t h e g r o u p s h a d r e g a r d i n g t h e p r o c e d u r e s o r t h e i r i n v o l v e m e n t . S h o r t q u e s t i o n n a i r e s i n c l u d i n g a . l e t t e r o f e x p l a n a t i o n w e r e t h e n l e f t w i t h t h e c a s e m a n a g e r s . T h e c o m p l e t i o n o f t h e q u e s t i o n n a i r e c o n s t i t u t e d t h e i r c o n s e n t t o p a r t i c i p a t e i n t h e p r o j e c t . N i n e c a s e m a n a g e r s c o m p l e t e d t h e q u e s t i o n n a i r e . 2. F a m i l y C a r e g i v e r s : T h i s s a m p l e was c h o s e n f r o m o n e h e a l t h u n i t i n t h e c i t y b y a p p l y i n g a p r e d e t e r m i n e d s e t o f c r i t e r i a t o a r a n d o m s a m p l e o f L T C p r o g r a m c l i e n t s . T h e s a m p l e was n o t p u r p o s i v e i n t h a t t h e o r i g i n a l s a m p l e was o b t a i n e d b y r a n d o m s e l e c t i o n . A g a i n , t h e i n i t i a l a i m was t o c o n t a c t a n d i n t e r v i e w t e n f a m i l y c a r e g i v e r s . P r i m a r y c o n c e r n was t o e n s u r e v a r i e t y , n o t n e c e s s a r i l y r e p r e s e n t a t i v e n e s s o f t h e s a m p l e . W h i l e c o n s i d e r a t i o n was a g a i n g i v e n t o d r a w i n g t h e s a m p l e f r o m a b r o a d e r g e o g r a p h i c a r e a , n e g o t i a t i n g e n t r y t o f i l e s i n n u m e r o u s h e a l t h u n i t s a n d a r r a n g i n g w i t h n u m e r o u s a s s e s s o r s a n d s u p e r v i s o r s t o a c c e s s t h e c l i e n t s a n d t h e i r c a r e g i v e r s w o u l d h a v e p r o v e n t o o t i m e c o n s u m i n g g i v e n t h e t i m e a n d t a s k p a r a m e t e r s o f t h i s p r o j e c t . C r i t e r i a : A s e t o f c r i t e r i a was i d e n t i f i e d a n d u s e d i n o b t a i n i n g a s a m p l e o f h i g h r i s k c a r e g i v e r s . T h e f o l l o w i n g a r e t h o s e c r i t e r i a a n d t h e r a t i o n a l e b e h i n d t h e i r u s e . 1. C l i e n t be o v e r t h e a g e o f 6 5 . A s t h i s s t u d y was f o c u s i n g o n t h e n e e d s o f f a m i l i e s c a r i n g f o r e l d e r l y i n f i r m r e l a t i v e s , t h e a r b i t r a r y a n d c u s t o m a r y a g e o f 49 65 was a d o p t e d t o i d e n t i f y t h o s e c o n s i d e r e d t o b e e l d e r l y . 2. T h e c l i e n t be a s s e s s e d a t a n I C 2 , I C 3 ( i n t e r m e d i a t e c a r e l e v e l 2 o r 3) o r EC ( e x t e n d e d c a r e ) l e v e l s b y t h e L o n g T e r m C a r e p r o g r a m . A l t h o u g h c a r e g i v e r r e l i e f may be n e c e s s a r y i n a n y c a r e g i v i n g s i t u a t i o n , t h o s e w h e r e t h e c l i e n t ' s p h y s i c a l n e e d s a r e g r e a t o r t h e r e i s a n e l e m e n t o f c o n f u s i o n o r d e m e n t i a p r e s e n t t h e g r e a t e s t r i s k o f b r e a k d o w n a n d n e e d f o r s u p p o r t . C l i e n t s a s s e s s e d a t i n t e r m e d i a t e c a r e l e v e l s o f t e n f a c e m u l t i p l e m e d i c a l p r o b l e m s a n d e x p e r i e n c e f u n c t i o n a l d e p e n d e n c y i n s e v e r a l a r e a s o f d a i l y f u n c t i o n i n g a n d p e r s o n a l c a r e . T h e e x t e n d e d c a r e c l i e n t i s u s u a l l y i m m o b i l e a n d r e q u i r e s a s s i s t a n c e w i t h t r a n s f e r s a s w e l l a s o t h e r p e r s o n a l c a r e t a s k s . A t t h e s e l e v e l s o f c a r e , some l e v e l o f d e m e n t i a a n d / o r m e m o r y i m p a i r m e n t i s common. 3. T h e c a r e g i v e r r e s i d e i n t h e same home a s t h e c l i e n t . T h i s s t u d y was f o c u s i n g o n t h e n e e d s o f c a r e g i v e r s f a c e d w i t h d a i l y a n d c o n t i n u a l c a r e g i v i n g r e s p o n s i b i l i t i e s . C a r e g i v e r s r e s i d i n g o u t s i d e t h e home may h a v e d i f f e r e n t n e e d s a n d f a c e d i f f e r e n t i s s u e s t h a n t h o s e r e s i d i n g w i t h t h e c l i e n t . 4. T h e c a r e g i v e r m u s t be i d e n t i f i e d a s t h e p r i m a r y s o u r c e o f s u p p o r t . C o n c e r n i n t h i s s t u d y was w i t h t h e b u r d e n f a c e d b y p e r s o n s c a r r y i n g t h e b u l k o f r e s p o n s i b i l i t y f o r c a r e g i v i n g . 5. T h e L o n g T e r m C a r e f i l e c o n t a i n some n o t a t i o n r e f e r r i n g t o c a r e g i v e r s t r e s s , b u r d e n , o r n e e d f o r r e s p i t e . T h i s c r i t e r i a f u r t h e r f o c u s e s t h e s a m p l e o n a h i g h r i s k p o p u l a t i o n . 6. T h e c a r e g i v e r be f l u e n t i n E n g l i s h . D e t a i l e d a n d d i r e c t i n f o r m a t i o n a b o u t p e r c e p t i o n s a n d n e e d s i s h a m p e r e d b y t h e u s e o f i n t e r p r e t e r s . P r o c e d u r e : T h e c a s e l o a d p r i n t o u t s f o r M a r c h , 1 9 8 9 w e r e o b t a i n e d f r o m e a c h c a s e m a n a g e r i n t h e t a r g e t h e a l t h u n i t . T h e s e b o o k s i n c l u d e c l i e n t n a m e s , a d d r e s s e s , c a r e l e v e l s , a n d a s s e s s m e n t d a t e s . T h e s e b o o k s w e r e r e v i e w e d t o c o m p i l e a l i s t o f a l l c l i e n t s a s s e s s e d a t I C 2 , I C 3 o r EC l e v e l s a n d w i t h n o n -i n s t i t u t i o n a l a d d r e s s e s . F r o m t h e o r i g i n a l p o p u l a t i o n o f a p p r o x i m a t e l y 1 5 0 0 L o n g T e r m C a r e c l i e n t s i n t h i s h e a l t h u n i t , a s a m p l i n g f r a m e o f 1 9 8 was c o m p i l e d f r o m t h e r e v i e w o f c a s e b o o k s . A r a n d o m s a m p l e o f s e v e n t y - f i v e n a m e s w e r e c h o s e n f r o m t h i s l i s t . T h e n e x t s t e p was t o r e v i e w t h e c h a r t s o f t h e s e s e v e n t y -f i v e L o n g T e r m C a r e c l i e n t s . T h i s was d o n e u s i n g a o n e p a g e d a t a s h e e t t h a t g a t h e r e d i n f o r m a t i o n r e l a t i n g t o t h e c r i t e r i a o u t l i n e d a b o v e ( s e e A p p e n d i x D ) . Of t h e o r i g i n a l s a m p l e o f s e v e n t y - f i v e , t w e n t y - t w o m e t a l l o f t h e o r i g i n a l c r i t e r i a . F u r t h e r i n v e s t i g a t i o n r e v e a l e d t h a t t w o c l i e n t s h a d d i e d , t w o w e r e h o s p i t a l i z e d , t w o c a s e s w e r e n o t a p p r o p r i a t e a s c a r e g i v i n g s i t u a t i o n s a n d a n o t h e r d i d n o t h a v e a n E n g l i s h s p e a k i n g c a r e g i v e r . A n o t h e r s i x r e f u s e d t o p a r t i c i p a t e f o r a v a r i e t y o f r e a s o n s i n c l u d i n g f e a r o f c l i e n t r e p r i s a l a n d p e r s o n a l 51 d i s c o m f o r t with r e s e a r c h involvement. I n i t i a l c o n t a c t with the primary c a r e g i v e r s of the remaining nine c l i e n t s was made by the case manager i n v o l v e d i n each s i t u a t i o n . The case managers b r i e f l y e x p l a i n e d the purpose of the r e s e a r c h p r o j e c t and determined i f the c a r e g i v e r s , were i n t e r e s t e d i n p a r t i c i p a t i n g . Once v e r b a l consent was obtained through t h i s telephone c o n t a c t , the resear c h e r mailed e x p l a n a t o r y l e t t e r s to each f a m i l y c a r e g i v e r (see Appendix A). These l e t t e r s were followed up by a telephone c a l l from the re s e a r c h e r to e s t a b l i s h the c a r e g i v e r ' s continued w i l l i n g n e s s to p a r t i c i p a t e and to arrange an i n t e r v i e w time a t the convenience of the f a m i l y . The r e s u l t i n g sample of nine c o n s i s t e d of two d a u g h t e r - i n -laws, four daughters, and three wives. A l l c a r e g i v e r s i n the sample were female. Two i n t e r v i e w s were conducted with other f a m i l y members present to help i n t e r p r e t and r e l i e v e c a r e g i v e r a n x i e t y about the i n t e r v i e w . Data C o l l e c t i o n Procedure Data were c o l l e c t e d from two groups of respondents. Each group w i l l be d e a l t with s e p a r a t e l y i n t h i s s e c t i o n . 1. Family C a r e g i v e r s : Interviews were conducted with f a m i l y c a r e g i v e r s i n t h e i r homes between March 1988 and May 1988. Each i n t e r v i e w l a s t e d 60 to 75 minutes. A l l i n t e r v i e w s were audio recorded by the res e a r c h e r and l a t e r t r a n s c r i b e d . 52 The i n t e r v i e w s were conducted using a f l e x i b l e focused format. There was no f i x e d order or wording of the q u e s t i o n s . The i n t e r v i e w followed a d i s c u s s i o n format that a d j u s t e d to the t o p i c s and i s s u e s r a i s e d by the c a r e g i v e r while a l s o a d d r e s s i n g b a s i c i s s u e s o u t l i n e d by the r e s e a r c h e r . (See Appendix C f o r a copy of the o u t l i n e and suggested prompts used by the r e s e a r c h e r d u r i n g these i n t e r v i e w s . ) The g e n e r a l i s s u e s addressed i n the i n t e r v i e w were; 1. The c a r e g i v e r experience, sources of s t r e s s and d i f f i c u l t y . 2. A v a i l a b l e i n f o r m a l and f a m i l y supports and c a r e g i v e r a t t i t u d e s towards using these supports. 3. Use of formal supports and the b e n e f i t s d e r i v e d . 4. C a r e g i v e r p e r c e p t i o n s of the balance between use of formal and i n f o r m a l supports. 5. P e r c e p t i o n of f u t u r e needs and a b i l i t y to cope. 6. Knowledge and a t t i t u d e s concerning r e s p i t e s e r v i c e s . 7. Suggestions f o r change and improvement i n formal supports. As the i n t e r v i e w s progressed and concepts began to emerge from the data, questions focused more on the c a r e g i v e r ' s p e r c e p t i o n of t h e i r r o l e and a t t i t u d e s towards a c c e p t i n g support from e i t h e r i n f o r m a l or formal sources. 2. Case Managers: Data were gathered from t h i s group of respondents u s i n g two methods. I n i t i a l l y a case s c e n a r i o q u e s t i o n n a i r e was 53 d i s t r i b u t e d to each case manager. This q u e s t i o n n a i r e c o n s i s t e d of four b r i e f case d e s c r i p t i o n s of s i t u a t i o n s where the c a r e g i v e r was e x p e r i e n c i n g some form of s t r e s s or d i f f i c u l t y c oping. The s c e n a r i o s were compiled by the re s e a r c h e r and were designed to r e f l e c t a range of c a r e g i v e r ages, gender d i f f e r e n c e s , g e n e r a t i o n a l v a r i a t i o n s , resource a v a i l a b i l i t y , and r e l a t i o n s h i p s with c l i e n t s and extended f a m i l i e s . The c l i e n t d e s c r i p t i o n s i n c o r p o r a t e d a v a r i e t y of diagnoses, f u n c t i o n a l a b i l i t i e s , d u r a t i o n of d i s a b i l i t y and prognoses. Personal experience of the resear c h e r and feedback from p r e t e s t s and the re s e a r c h i t s e l f confirmed the aim of r e p r e s e n t i n g a v a r i e t y of ' t y p i c a l 1 high r i s k community s i t u a t i o n s . In response to the s c e n a r i o s , the case managers were asked t o : 1) I d e n t i f y the major i s s u e s i n the s i t u a t i o n ; 2) I d e n t i f y the supports and s t r e s s e s to the c a r e g i v e r ; and 3) Provide recommendations f o r s e r v i c e s (see Appendix E ) . Each q u e s t i o n n a i r e was completed I n d i v i d u a l l y and took between 45 and 60 minutes. The r e s e a r c h e r reviewed each q u e s t i o n n a i r e and used the i n f o r m a t i o n as a b a s i s f o r conducting follow-up i n t e r v i e w s with the case managers. Focused i n t e r v i e w s were again used with t h i s second sample. Each i n t e r v i e w was conducted at the case manager's h e a l t h u n i t d u r i n g A p r i l , 1988. Approximately 60 minutes was needed to complete the i n t e r v i e w . These i n t e r v i e w s were audio recorded and l a t e r t r a n s c r i b e d . As with the c a r e g i v e r i n t e r v i e w s , the qu e s t i o n wording and order was not f i x e d and was ad j u s t e d 54 a c c o r d i n g to i s s u e s r a i s e d by the q u e s t i o n n a i r e and t o p i c s of importance as seen by the case manager (see Appendix F f o r an o u t l i n e of sample questions and prompts). Open-ended questions and a d i s c u s s i o n format was used to e l i c i t i n f o r m a t i o n on the f o l l o w i n g i s s u e s : 1. Relevance of the q u e s t i o n n a i r e and i s s u e s r a i s e d as compared to p e r c e p t i o n of community need. 2. P e r c e p t i o n of need i n the community for r e s p i t e or c a r e g i v e r support s e r v i c e s . 3. B e n e f i t s and l i m i t a t i o n s of formal r e s p i t e s e r v i c e s . 4. C r i t e r i a f o r a s s e s s i n g need for r e s p i t e s e r v i c e s . 5. P e r c e p t i o n of f a m i l y involvement, support and r e s p o n s i b i l i t y f o r c a r e g i v i n g . 6. Recommendations f o r changes or improvements to b e t t e r meet i d e n t i f i e d need. Data A n a l y s i s Data was analyzed using g u i d e l i n e s f o r constant comparative a n a l y s i s developed by Strauss (1987) and q u a l i t a t i v e a n a l y s i s techniques developed by M i l e s and Huberman (1984). The f o l l o w i n g i s a d e s c r i p t i o n s of the methods used to organize and understand the data produced by t h i s study. While some procedures preceded o t h e r s , many occurred s i m u l t a n e o u s l y . 1. Open Coding: Once the i n t e r v i e w s were t r a n s c r i b e d , a system of open coding was used to i d e n t i f y the t o p i c s , issues and p o s s i b l e 55 themes emerging from the data. Each i n t e r v i e w was l i s t e n e d to and then read to o b t a i n g e n e r a l impressions of the content. The t r a n s c r i p t i o n s were then reviewed l i n e by l i n e , coding the substance of the content i n the margins. Open coding r e f l e c t e d what the data were p e r t i n e n t t o , what c a t e g o r i e s were being i n d i c a t e d and what was happening to the data (Strauss 1987). Many of the codes r e f l e c t e d the respondents own words and thus arose d i r e c t l y from the data. Other codes were r e l a t e d to c o n s t r u c t s found i n the l i t e r a t u r e r e l a t e d to t h i s t o p i c . T h i s process of open coding provided the s p r i n g board f o r development of l a t e r core c a t e g o r i e s and c o n s t r u c t i o n of themes. As the re s e a r c h e r moved through the data the codes changed and the a n a l y s i s process r e q u i r e d c o n t i n u a l review of p r e v i o u s l y coded data to c r e a t e a cohesive impression of the data. The t r a n s c r i p t i o n s and a l l i n i t i a l coding was reviewed r e p e a t e d l y to i d e n t i f y c a t e g o r i e s by c l u s t e r i n g open codes a c c o r d i n g to more general themes. These c a t e g o r i e s r e f l e c t e d r e l a t i o n s h i p s between statements made by respondents to v a r i o u s q u e s t i o n s . For each s e t of i n t e r v i e w s seven to e i g h t c a t e g o r i e s of i s s u e s were e v e n t u a l l y i d e n t i f i e d . 2J A x i a l Coding: A x i a l coding i n v o l v e d intense a n a l y s i s around one categor y at a time. Each category was d i m e n s i o n a l i z e d and i t s p r o p e r t i e s i d e n t i f i e d . Concepts were developed through a n a l y s i s of c o n d i t i o n s , consequences and i n t e r a c t i o n s of v a r i o u s 56 s u b c a t e g o r i e s and codes. The r e s e a r c h e r began to i d e n t i f y and hypothesize about r e l a t i o n s h i p s between v a r i o u s c a t e g o r i e s and subcategor i e s . Once the i n t e r v i e w s were a l l coded and c a t e g o r i e s i d e n t i f i e d , c o p i e s of the i n t e r v i e w s were made. Each t r a n s c r i p t i o n was c o l o r coded to f a c i l i t a t e i d e n t i f i c a t i o n of the o r i g i n a t i n g i n t e r v i e w . I n d i v i d u a l comments of the respondents were separated (cut and paste method) and c l u s t e r e d a c c o r d i n g to the conceptual c a t e g o r i e s i d e n t i f i e d . Comments w i t h i n each category were then f u r t h e r examined and analyzed to i d e n t i f y u n d e r l y i n g c o n d i t i o n s , themes and i s s u e s . The comments were organized with a n a r r a t i v e on sheets of paper to c r e a t e a core t e x t of the data. 3. Development of Core C a t e g o r i e s : Once the i n t e r v i e w s had been coded, broken down and r e o r g a n i z e d a c c o r d i n g to conceptual c a t e g o r i e s emerging from the data, the process of i d e n t i f y i n g core c a t e g o r i e s became the focus of the a n a l y s i s . Core c a t e g o r i e s are c e n t r a l themes t h a t appear r e p e a t e d l y through out the data, r e l a t e e a s i l y to other c a t e g o r i e s and have c l e a r i m p l i c a t i o n s f o r more g e n e r a l theory ( S t r a u s s , 1987). I t i s the core c a t e g o r i e s that generate theory from the data. The r e s e a r c h e r looked f o r r e l a t i o n s h i p s between s u b c a t e g o r i e s and t h e i r p r o p e r t i e s and worked to render the core category dense and s a t u r a t e d . Core c a t e g o r i e s were proven r e p e a t e d l y by t h e i r r e l a t i o n s h i p to other c a t e g o r i e s and t h e i r a b i l i t y to account f o r maximum v a r i a t i o n i n the data and 57 a n a l y s i s with a few concepts (Strauss 1987). Core c a t e g o r i e s d i d not suddenly appear at the end of open and a x i a l c oding. While the re s e a r c h e r worked through the beginning stages of the a n a l y s i s , ideas and impressions began to emerge. These were f u r t h e r developed a f t e r the i n i t i a l groundwork was completed. 4. Memo W r i t i n g ; Memo w r i t i n g occurs at a l l stages of the a n a l y t i c process and forms the backbone on which c a t e g o r i e s and core themes are developed. T h i s process i n v o l v e d s t o p p i n g at any stage to w r i t e down i n s i g h t s , q u e s t i o n s , hypotheses. Memos were kept separate from the data. They were the major i n t e g r a t i v e mechanism f o r understanding the data and formed a running r e c o r d of the theory development. 5. I n t e g r a t i v e Diagrams and Charts; This process f u r t h e r aided the researc h e r i n de v e l o p i n g and f u l l y i n t e g r a t i n g concepts. While Strauss (1987) g i v e s t h i s technique some a t t e n t i o n under a d i s c u s s i o n of memo w r i t i n g , i t i s M i l e s and Huberman (1984) t h a t explored t h i s method of a n a l y s i s i n d e t a i l . D i s p l a y i n g data i n a v i s u a l and summary way through the use of a matrix, c h a r t , c h e c k l i s t or f i g u r e can a i d the res e a r c h e r i n f u r t h e r c o n c e p t u a l i z i n g and i n t e g r a t i n g core c a t e g o r i e s and i s u s e f u l to the reader of the re s e a r c h i n understanding the i n t e r r e l a t i o n s h i p s between c a t e g o r i e s and core themes. This method was used by the res e a r c h e r i n the l a t t e r stages of a n a l y s i s i n order to summarize r e l a t i o n s h i p s between s u b c a t e g o r i e s and the main theme and to i l l u s t r a t e s i m i l a r i t i e s and d i f f e r e n c e s i n the two respondent groups. 6. Report and T h e s i s W r i t i n g ; The l a s t stage of any a n a l y s i s and r e s e a r c h process i s the w r i t i n g of a r e p o r t . The r e p o r t c o n t a i n s a summary of the f i n d i n g s organized a c c o r d i n g to the conceptual c a t e g o r i e s t h a t emerged from the r e s e a r c h . Anecdotal support i s used to i l l u s t r a t e the c a t e g o r i e s . A separate d i s c u s s i o n s e c t i o n r e l a t e s the core c a t e g o r i e s or themes to the f i n d i n g s and l i t e r a t u r e . C onclusions i n the form of hypotheses and s u b s t a n t i v e theory r e l a t e the. i s s u e s of community need and formal system supports to the dilemma of c r e a t i n g a balance of s t a t e and f a m i l y c a r e g i v i n g . Summary Th i s chapter has o u t l i n e d the need to address t h i s r e s e a r c h t o p i c u s i n g a q u a l i t a t i v e grounded theory d e s i g n . Data c o l l e c t e d from f a m i l y members and case managers was used to develop concepts and s u b s t a n t i v e theory r e l a t i n g to understanding community need for r e s p i t e s e r v i c e s and development of proposed program o b j e c t i v e s . 59 CHAPTER 4 PRESENTATION OF RESEARCH FINDINGS Th i s chapter o u t l i n e s the f i n d i n g s of the r e s e a r c h i n n a r r a t i v e form. The quotes have been e d i t e d from verbatim t r a n s c r i p t s i n order to present c o n c i s e r e p r e s e n t a t i o n s of the responses. During the data a n a l y s i s , data from each s e t of in t e r v i e w s were arranged i n t o broad c a t e g o r i e s or themes. I t i s these c a t e g o r i e s that c r e a t e the o u t l i n e f o r t h i s p r e s e n t a t i o n . The i n t e r v i e w s with the case managers w i l l be d i s c u s s e d s e p a r a t e l y from those with c a r e g i v e r s . Each theme w i l l be i d e n t i f i e d and followed by quotes and summary statements t h a t r e f l e c t the range of e x p r e s s i o n of t h i s a r ea. A s h o r t summary of each theme w i l l i n c l u d e some i n i t i a l i n t e r p r e t i v e comments. The f o l l o w i n g chapter provides f u r t h e r d e t a i l e d i n t e r p r e t a t i o n and a t h e o r e t i c a l d i s c u s s i o n of the i m p l i c a t i o n s of these f i n d i n g s . Case Manager Q u e s t i o n n a i r e s In t h i s s e c t i o n of the r e s e a r c h , nine case managers completed q u e s t i o n n a i r e s . The respondents were from two g e o g r a p h i c a l l y adjacent h e a l t h u n i t s . There were four nurses, three s o c i a l workers, one o c c u p a t i o n a l t h e r a p i s t and one p h y s i o t h e r a p i s t i n c l u d e d i n the study. T h e i r experience i n the Long Term Care Program ranged from nine months to s i x ye a r s , with most having at l e a s t three years experience. 60 The responses to the case s c e n a r i o s i n the q u e s t i o n n a i r e s were b r i e f and i n note form. For a l l the respondents, a broad v a r i e t y of f a m i l y i s s u e s and s t r e s s e s were i d e n t i f i e d and numerous s e r v i c e s suggested as supports. The q u e s t i o n n a i r e s provided a base f o r d i s c u s s i o n i n the i n t e r v i e w s and thus data from these q u e s t i o n n a i r e s i s i n t e g r a t e d i n t o the i n t e r v i e w responses. Case Manager Interviews T h i s s e c t i o n p r o v i d e s a summary of the comments and themes that emerged from the i n t e r v i e w s with case managers. The data have been grouped i n t o broad themes i n c l u d i n g the respondents' r e c o g n i t i o n of need, p e r c e i v e d b e n e f i t s of r e s p i t e , b a r r i e r s to meeting need from w i t h i n formal and i n f o r m a l networks and f i n a l l y t h e i r thoughts and recommendations f o r change. Before proceeding with the p r e s e n t a t i o n of these themes, responses to two s p e c i f i c q u e s t i o n s i n the i n t e r v i e w w i l l be presented as they provide a context f o r the other responses. F i r s t l y , a l l of the case managers commented s p e c i f i c a l l y on the q u e s t i o n n a i r e . They found the s c e n a r i o s r e p r e s e n t a t i v e of i s s u e s and dilemmas they see i n the community. The q u e s t i o n n a i r e was d e s c r i b e d as " q u i t e f a m i l i a r " and "very t y p i c a l and a p p r o p r i a t e " . These comments support the assumption that responses and d i s c u s s i o n of these cases r e f l e c t s case managers' r e a c t i o n s and thoughts about community needs. As i n t h e i r work s i t u a t i o n s , there were gaps i n the 61 Information. T h i s meant that care plans were made on the b a s i s of c e r t a i n assumptions. Questions were r a i s e d i n d i c a t i n g the need f o r f u r t h e r c l a r i f i c a t i o n of some s i t u a t i o n s . Interviews were i n i t i a l l y based on a d i s c u s s i o n of the q u e s t i o n n a i r e which can be taken as i n d i c a t i v e of community i s s u e s . The i n t e r v i e w s progressed beyond t h i s focus and encompassed broader d i s c u s s i o n of case loads and a t t i t u d e s towards the community and LTC program. Respondents i n t h i s study were not provided with a d e f i n i t i o n of r e s p i t e but r a t h e r were asked to d e f i n e r e s p i t e as they i n t e r p r e t e d the concept. T h i s p r o j e c t was intended to focus on i n d i v i d u a l p e r c e p t i o n s of what r e s p i t e i s or should be ra t h e r than r e f l e c t an o f f i c i a l d e f i n i t i o n . When asked to d e s c r i b e t h e i r view of r e s p i t e , case managers provided a broad d e f i n i t i o n t h a t i n c o r p o r a t e d a v a r i e t y of s e r v i c e s c o n s i d e r i n g p h y s i c a l , emotional, and mental h e a l t h . I t was seen to provide "a r e p r i e v e or break", " r e s t and s t i m u l a t i o n " , and to " r e l i e v e emotional and p h y s i c a l s t r a i n " . T h i s could be accomplished through r e s p i t e beds, a d u l t day ca r e , homemakers or c a r e g i v e r support groups. Re s p i t e was d e f i n e d by the b e n e f i t s i t p r o v i d e s , not by the s t r u c t u r e of the s e r v i c e . Primary focus of r e s p i t e was seen as meeting the needs of the c a r e g i v e r . I t puts energy and support i n t o the c a r e g i v i n g system and t h e r e f o r e has a simultaneous impact on the c l i e n t and other members of the f a m i l y system. I t i s a "chance f o r them to have some s t i m u l a t i o n and enjoyment and rejuvenate each o t h e r " . With t h i s understanding of the b a s i s f o r the i n t e r v i e w and the respondents' views of r e s p i t e , t h i s p r e s e n t a t i o n w i l l now proceed with the d i s c u s s i o n of themes. 1. R e c o g n i t i o n of Need: Much of the d i s c u s s i o n i n the i n t e r v i e w s focused on how the case managers p e r c e i v e d need f o r r e s p i t e s e r v i c e s . T h e i r responses are d i v i d e d i n t o a d i s c u s s i o n of i s s u e s r e l a t e d to the f a m i l y and informal supports and issu e s a d d r e s s i n g the r o l e of formal supports. Issues of the Family and Informal Supports This s e c t i o n i n c l u d e s d i s c u s s i o n of the l i m i t a t i o n s of in f o r m a l r e s o u r c e s , r o l e i s s u e s , the e x t e n s i v e r e s p o n s i b i l i t y of c a r e g i v i n g and the need to v a l i d a t e i n d i v i d u a l needs. A. L i m i t a t i o n s of Informal Resources A l l of the case managers reco g n i z e d that there are very r e a l l i m i t a t i o n s on the reso u r c e s of f a m i l i e s and t h e i r a b i l i t y to cope with the demands of c a r e g i v i n g . Many of these l i m i t a t i o n s r e l a t e d to i n d i v i d u a l s k i l l l e v e l , f a m i l y f u n c t i o n i n g s t y l e , p a t t e r n s of handl i n g c o n f l i c t and the h i s t o r y of the r e l a t i o n s h i p . One case manager d e s c r i b e d the need to i d e n t i f y p e r s o n a l l i m i t a t i o n s of the c a r e g i v e r when a s s e s s i n g t h e i r need f o r s e r v i c e s . "She phones up and says t h a t she i s having problems coping with the care of her mother and she can't go on. She wants 63 to put her on a wait l i s t . I w i l l v i s i t . That daughter may be f o r whatever reason not able to cope with care once i t gets i n t o a l o t of per s o n a l c a r e , so my f e e l i n g would be i n t h a t s i t u a t i o n t h a t t h i s f a m i l y i s not able to care f o r t h i s person versus ten others where the f a m i l y i s able to cope with p e r s o n a l c a r e . " In a d d i t i o n to s k i l l l e v e l and a b i l i t y to d e a l with s t r e s s and c o n f l i c t , the h i s t o r y of the f a m i l y r e l a t i o n s h i p s was a l s o i d e n t i f i e d as an important i n f l u e n c i n g f a c t o r . As one case manager s t a t e d , "I t h i n k that one of the most d i f f i c u l t t h i n g s t h a t f a m i l i e s f i n d i s c a r i n g f o r an e l d e r l y r e l a t i v e who has been an unpleasant person i n the past and i s now i n need of a f a i r amount of per s o n a l c a r e . They f i n d i f d i f f i c u l t to give the care and do t h i n g s f o r t h a t person because they are probably s t i l l d i f f i c u l t and unpleasant." Along with i n t e r p e r s o n a l i s s u e s impacting on the c a r e g i v i n g p o t e n t i a l many e x t e r n a l l i m i t a t i o n s and competing demands were a l s o commented on. Many c a r e g i v e r s , e s p e c i a l l y those i n the middle g e n e r a t i o n , face competing work and f a m i l y demands. Resources were d e s c r i b e d as l i m i t e d due to s h r i n k i n g f a m i l y networks, geographic d i s t a n c e s , and care demands from other g e n e r a t i o n s . Some of the case managers i d e n t i f i e d the need f o r f a m i l y members to l i m i t t h e i r involvement i n the c a r i n g of an e l d e r l y r e l a t i v e i n order to balance competing demands i n t h e i r l i v e s . 64 "The daughter that has her own young f a m i l y i s w i l l i n g to put the amount, whether i t i s a weekly v i s i t or whatever, . but they have l i m i t a t i o n s i n terms of j u g g l i n g t h e i r own r o l e s and l i v e s - - a n d i t i s probably wise. If they s t a r t t a k i n g on a l l the p a r e n t a l p r o b l e m s . . . i t r e a l l y would become overwhelming." There was general agreement amongst the respondents that f a m i l i e s are very i n v o l v e d and s u p p o r t i v e i n the care of e l d e r l y r e l a t i v e s but that t h i s support has l i m i t a t i o n s . T h i s case manager d i s c u s s e d the i n a b i l i t y of f a m i l i e s to i n c r e a s e support i n the face of i n c r e a s e d demands. " i n a normal f a m i l y the support from the f a m i l y i s the same but when the s i t u a t i o n becomes horrendous, i t ( f a m i l y support) s t i l l s t a y s the same....It doesn't kick i n more" B. Role Issues: Roles i s s u e s were another area of c o n s i d e r a t i o n . Here gender r o l e was a s s o c i a t e d with c a r e g i v i n g . "Let's face i t , women are always t a k i n g care of, and I am aware of t h a t . L e t ' s help the women as much as p o s s i b l e . " T h i s case manager summarized some of the d i f f i c u l t i e s t h a t f a m i l i e s have a d j u s t i n g to what they see as r o l e r e v e r s a l . "Somebody t h a t they have looked to as a parent and looked to f o r guidance and advice i s suddenly t h e i r c h i l d . Some people are very uncomfortable with t h a t . . . . I t i s a d i f f i c u l t s i t u a t i o n to know how f a r to go In r e v e r s i n g r o l e s and how much they should a l l o w t h e i r e l d e r l y r e l a t i v e 65 or spouse to s t i l l remain autonomous." C a r e g i v e r s were seen to lack r o l e models for t h e i r newly a c q u i r e d r e s p o n s i b i l i t i e s . C. E x t e n s i v e R e s p o n s i b i l i t y : Most case managers saw the task of p r o v i d i n g care as an all-consuming r e s p o n s i b i l i t y . They d e s c r i b e d a great number of demands, p h y s i c a l tasks and r e s p o n s i b i l i t i e s . It was f e l t t h a t t h i s high degree of r e s p o n s i b i l i t y leads to mental and emotional s t r a i n on the part of the c a r e g i v e r and the need to have some r e l i e f or r e s p i t e from the s i t u a t i o n . "In a l o t of these cases they have been t r y i n g to cope f o r s e v e r a l y e a r s . . . . They (the c l i e n t ) can't be l e f t alone so the c a r e g i v e r i s housebound, trapped i n a s i t u a t i o n . " As one case manager s t a t e d , "We would be keeping the c a r e g i v e r s i n a b e t t e r s t a t e of h e a l t h and p s y c h o l o g i c a l w e l l - b e i n g i f we had some r e s p i t e for them." When d e s c r i b i n g the e f f e c t c a r e g i v i n g has on every aspect of the c a r e g i v e r ' s l i f e , case managers presented the need for s e r v i c e s to address p h y s i c a l , emotional and p s y c h o l o g i c a l needs. D. V a l i d a t i o n of I n d i v i d u a l Need S e v e r a l of the case managers d i s c u s s e d the need to give c a r e g i v e r s the time and o p p o r t u n i t y to pursue i n t e r e s t s and a c t i v i t i e s separate from t h e i r c a r e g i v i n g r o l e . S e r v i c e s such as r e s p i t e were seen as important i n order to provide support and v a l i d a t i o n to c a r e g i v e r ' s r i g h t to improve the q u a l i t y of 66 t h e i r l i v e s . "A l o t of the c a r e g i v e r s are r e t i r e d and they have always thought of ret i r e m e n t as doing c e r t a i n t h i n g s . . . . I f they are being a c a r e g i v e r , they need time out to pursue t h e i r own pers o n a l g o a l s . " The f o l l o w i n g quote by a case manager r e f l e c t s how many c a r e g i v e r s have d i f f i c u l t y i d e n t i f y i n g t h e i r own needs or g i v i n g themselves permi s s i o n to seek help or support. "For some c a r e g i v e r s , they need a l o t of encouragement and c o u n s e l l i n g to pursue some of the fun t h i n g s while being a c a r e g i v e r . I know one lady whose husband had very bad alzheimer's and she s a i d to me 'I can't have fun and laugh. T h i s i s n ' t a laughing s i t u a t i o n . ' " Case managers saw a s t r o n g need to e s t a b l i s h s e r v i c e s that take i n t o c o n s i d e r a t i o n the unique circumstances and needs of c a r e g i v e r s . The need f o r support was presented as ex t e n s i v e and v a r i e d g i v e n the resource l i m i t a t i o n s and e x t e n s i v e burden faced by many f a m i l i e s . One case manager s t a t e d t h a t " r e l y i n g on f a m i l y i s n ' t a good long term s o l u t i o n " . Issues Related to the Role of Formal Supports Case managers a l s o d i s c u s s e d t h e i r p e r c e p t i o n of the r o l e of Long Term Care and .other aspects of formal care s e r v i c e s . Given the f a m i l y and community need f o r r e s p i t e and f a m i l y support s e r v i c e s , t h i s s e c t i o n examines what case managers saw as the r o l e of formal supports under the headings of economic j u s t i f i c a t i o n , the need to assume supplemental r o l e s , the need to balance c l i e n t and c a r e g i v e r needs and the b e n e f i t s of su p p o r t i n g f a m i l y c a r e . A. Economic J u s t i f i c a t i o n : P r o v i d i n g support to the c a r e g i v e r was seen as a c o s t e f f e c t i v e i n t e r v e n t i o n that b e n e f i t s the c a r e g i v e r , c l i e n t and the Long Term Care Program by f a c i l i t a t i n g ongoing f a m i l y and community c a r e . "Unless we are going to put a l l of these people i n f a c i l i t i e s , we are r e l y i n g on f a m i l i e s to take r e s p o n s i b i l i t y f o r the care of these c l i e n t s . I f we don't give them some kind of support and l e a r n what t h e i r needs are, how can we expect them to do an adequate job of c a r i n g for c l i e n t s . " In a d d i t i o n to t h i s concern f o r the best i n t e r e s t s of the c l i e n t , support s e r v i c e s prove to be ec o n o m i c a l l y a t t r a c t i v e i n a time of government r e s t r a i n t . B. Need to Take Supplemental Role: F a m i l i e s were recog n i z e d as the c e n t r a l support and th a t government s e r v i c e s such as Long Term Care were d e s c r i b e d as a supplement to the e f f o r t s of i n f o r m a l networks. The need f o r both f a m i l y and formal supports r e f l e c t e d the l i m i t a t i o n s seen i n each system. "I t h i n k t h a t we need a combination of both... and I thin k i t i s wise to ask f a m i l y what they can do as a f a m i l y . . . I t i s f i n e to say th a t we want to support you at home as long as p o s s i b l e but again f i n a n c i a l l y we know our l i m i t s . " 68 T h i s supplemental r e l a t i o n s h i p between the two sources of support f o r e l d e r l y persons was a l s o presented as complementary. "I think the s t r e n g t h s for the f a m i l y i s the emotional support.... because they are o f t e n o f f to work, LTC can do t h i s housework s t u f f . I r e a l l y think that f a m i l i e s c a r r y the bulk of c a r e g i v i n g . I see us supplementing what the f a m i l i e s can do." Th i s case manager r e f l e c t e d the b e l i e f t h a t f a m i l i e s and formal s e r v i c e s may f i n d themselves b e t t e r s u i t e d to p r o v i d i n g d i f f e r e n t kinds of support and a s s i s t a n c e . In a d d i t i o n to p h y s i c a l and resource l i m i t a t i o n impacting on the r e l a t i o n s h i p between Long Term Care and f a m i l i e s , there i s the issue of c o - o p e r a t i o n and r e s p o n s i b i l i t y . The responses of the case managers i n d i c a t e that they do not intend to r e p l a c e f a m i l y , but r a t h e r , place a high p r i o r i t y on a kind of co-o p e r a t i v e team work that leaves the f a m i l y with some c o n t r o l . "We are home support, not home takeover. We are going to he l p but we aren't going to take i t a l l away." " I t b e n e f i t s both p a r t i e s . . . . t o l e t f a m i l i e s f e e l that they have t h e i r part and we are not j u s t walking i n there and o r d e r i n g them around." Given the reassurance of support s e r v i c e s i t was b e l i e v e d t h a t f a m i l i e s would be more w i l l i n g to continue t h e i r r o l e as c a r e g i v e r s . C. The Need to Balance C l i e n t and Caregiver Needs One of the d i f f i c u l t i e s faced by case managers when 69 a s s e s s i n g the need f o r s e r v i c e or support i s the task of ba l a n c i n g d i f f e r e n t i n d i v i d u a l needs and p e r c e p t i o n s of the s i t u a t i o n . Case managers f i n d themselves wondering who t h e i r c l i e n t should be. "The c l i e n t i s supposedly your focus and you want the best t h i n g s f o r the c l i e n t , but i t r e a l l y depends. In some s i t u a t i o n s i t i s biased and I am e q u a l l y i f not more concerned about the wife (as c a r e g i v e r ) . " The case manager may act as an advocate for the c l i e n t or the c a r e g i v e r . S e v e r a l respondents commented on the d i f f i c u l t y they faced when attempting to p r i o r i z e needs. D. B e n e f i t s of Supporting Family Care Behind the e f f o r t s of these LTC case managers, a b a s i c b e l i e f i n the b e n e f i t s of f a m i l y involvement and c o n t r o l i n the c a r e g i v i n g s i t u a t i o n emerged. I t was f e l t t h a t f a m i l y c a r e g i v i n g i n v o l v e s an emotional attachment and commitment that i s d i f f i c u l t to d u p l i c a t e with i n s t i t u t i o n a l s e r v i c e s . "My goal i s always to keep that person at home as long as they are able t o . I g e n e r a l l y f i n d t h a t they don't do as w e l l once they move out of the home and they don't have t h a t f a m i l y support." S e v e r a l respondents saw f a m i l y care as Important to the c a r e g i v e r who i s very committed to p r o v i d i n g care and does not want to give up t h i s r o l e or c o n t r o l that i t o f f e r s them. " I t i s important f o r him to be the c a r e g i v e r because he doesn't f e e l t h a t anyone e l s e can do i t as w e l l as he can." 70 While the b e n e f i t s of f a m i l y care are many, the respondents f e l t i t was important to r e a l i z e t h at " o f t e n one f a m i l y member i s g e t t i n g the t o t a l r e s p o n s i b i l i t y " . I t was f e l t t h a t LTC needed to focus on i n c r e a s i n g the s t r e n g t h of the i n f o r m a l system through developing the resources a v a i l a b l e to i n d i v i d u a l s . Education, i n c r e a s e d awareness of a v a i l a b l e r e s o u r c e s , emotional support and c o u n s e l l i n g were a l l areas where case managers i d e n t i f i e d the need to i n t e r v e n e . As the f o l l o w i n g quote r e f l e c t s , people o f t e n have the resources to help themselves but need support and encouragement to develop and use t h i s p o t e n t i a l . "People are beginning to accept the idea of needing some p s y c h o l o g i c a l s u p p o r t . . . . t h a t maybe there are other means of g e t t i n g over what the c u r r e n t problem i s . " "Some f a m i l i e s are j u s t not c r e a t i v e . They don't thi n k about i t or because they have not t a l k e d to a p r o f e s s i o n a l and don't know what they can do to l e s s e n the load on themseIves." People o f t e n need support and education t o i d e n t i f y and dea l with t h e i r own needs. Respondents were a l e r t to the f a m i l y ' s view of the s i t u a t i o n and the need to re c o g n i z e and v a l i d a t e the s t r e s s c a r e g i v e r s e xperience. One case manager s a i d , "We are always l o o k i n g at the s t r e s s of the c a r e g i v e r . I t i s there a l l the time and needs r e c o g n i t i o n . " i n summary, the case managers i d e n t i f i e d the need f o r r e s p i t e care s e r v i c e s to respond to the resource l i m i t a t i o n of f a m i l i e s and to address the balance between formal and informal care. These case managers c l e a r l y saw LTC as a s e r v i c e that supplements the e x i s t i n g high l e v e l of support from f a m i l i e s . The program needs to continue to recognize l i m i t a t i o n s and weaknesses of c a r e g i v e r s and target s e r v i c e s to strengthen these areas. I t i s e s p e c i a l l y important to recognize the f a c t that most of the r e s p o n s i b i l i t y for care f a l l s on one i n d i v i d u a l and the emotional and mental s t r e s s that t h i s can cause. 2. B e n e f i t s of Respite Services This s e c t i o n o u t l i n e s what many case managers saw as both present and p o t e n t i a l b e n e f i t s of r e s p i t e care s e r v i c e s . The d i s c u s s i o n i s d i v i d e d under cat e g o r i e s of general impressions, b e n e f i t s to the c a r e g i v e r , the dual b e n e f i t s of r e s p i t e s e r v i c e s , education and t r a n s i t i o n b e n e f i t s , system s t i m u l a t i o n and emotional support provided by many r e s p i t e s e r v i c e s . A. General Impressions: When d i s c u s s i n g r e s p i t e care s e r v i c e s , most of the case managers f e l t that the present program worked w e l l and was able to meet most community needs. Their comments were often q u a l i f i e d by r e c o g n i t i o n of cost r e s t r a i n t s and comparison to other h e a l t h care systems. "I t h ink that given the framework of finances that they have to work under, they have got a r e a l l y good program." "At the same time you need to appreciate what i s a v a i l a b l e to s e n i o r s when you look at the United States where the cost i s dear or t h i r d world c o u n t r i e s where there i s 72 n ot hing." One of the main s t r e n g t h s of the LTC program was i d e n t i f i e d as i t s a b i l i t y to meet needs through a v a r i e t y of r e s p i t e s e r v i c e s . Homemaker supports, a d u l t day care, r e s p i t e beds i n f a c i l i t i e s , l i v e - i n companions and c a r e g i v e r support groups were a l l seen to provide r e s p i t e and support to c a r e g i v e r s . I t was b e l i e v e d that a v a r i e t y of s e r v i c e s meet d i f f e r e n t kinds of need and respond to i n d i v i d u a l f a m i l y p r e f e r e n c e s . "I have one lady whose husband i s q u i t e demented and I have sent her i n f o r m a t i o n r e p e a t e d l y on the c a r e g i v e r group but she was not a c c e p t i n g . She was comfortable with the idea of her husband going to a day program...That g i v e s her r e s p i t e and she f e e l s OK with t h a t . " Where one s e r v i c e was not a c c e p t a b l e to the c a r e g i v e r , another was able to provide her with the r e l i e f t h a t she needed. B. B e n e f i t s to the C a r e g i v e r : Many of the b e n e f i t s of r e s p i t e s e r v i c e s are d i r e c t e d at the c a r e g i v e r . Respondents saw r e s p i t e as an o p p o r t u n i t y f o r c a r e g i v e r s to pursue t h e i r own l i v e s and i n t e r e s t s . I t was p e r c e i v e d to provide some freedom and reduce p o s s i b l e f e e l i n g s of i s o l a t i o n and resentment. "The c a r e g i v e r at l e a s t f e e l s t h a t they have something that i s t h e i r own time. They can do whatever they want to do i n s t e a d of always being at the beck and c a l l of the c l i e n t . " I t was b e l i e v e d to provide emotional support and renewed mot i v a t i o n . " T h e y w o u l d f e e l r e s e n t f u l i f t h e y w e r e n ' t a b l e t o g e t o u t a n d l e a d t h e i r own l i v e s . I t h i n k i t p r o b a b l y r e f r e s h e s b o t h p a r t i e s . . . i t r e j u v e n a t e s . " C . D u a l B e n e f i t s o f R e s p i t e S e r v i c e s : w h i l e t h e f o c u s w a s o n t h e c a r e g i v e r , many o f t h e r e s p i t e s e r v i c e s w e r e s e e n t o b e n e f i t b o t h p a r t i e s . A d u l t d a y c a r e a s w e l l a s o t h e r s e r v i c e s w e r e i d e n t i f i e d a s p r o v i d i n g s t i m u l a t i o n a n d s o c i a l i z a t i o n t o t h e c l i e n t w h i l e e n a b l i n g t h e c a r e g i v e r t o h a v e a b r e a k . "The o b v i o u s b e n e f i t f o r t h e c a r e g i v e r i s t h a t i t g i v e s t h e m a f e w h o u r s b r e a k . . . F o r t h e c l i e n t t h e d a y c a r e s a r e v e r y c r e a t i v e a n d t r y t o p r o v i d e p r o g r a m s t h a t w o r k a t i m p r o v i n g s k i l l s . T h e y d o n ' t l o o k a t i t a s a l o s t c a u s e b u t s e e i t a s a c h a l l e n g e . " T h e s e r v i c e s w e r e s e e n a s a p o s i t i v e e x p e r i e n c e f o r t h e c l i e n t . A s r e s p i t e s e r v i c e s g i v e t h e c a r e g i v e r a c h a n c e t o p u r s u e l i f e g o a l s , i t g i v e s t h e c l i e n t a c h a n c e t o d e v e l o p s k i l l s a n d i n d e p e n d e n c e b o t h e m o t i o n a l l y a n d p h y s i c a l l y . " I t i s t h e r a p y f o r t h e c l i e n t who i s g o i n g o f f f o r t h e i r s o c i a l o u t l e t a n d p r o g r a m . F o r a l o t o f t h e m t h a t i s t h e o n l y t i m e t h a t t h e y g e t o u t . " A g a i n t h e f o c u s h e r e was o n p r o v i d i n g s t i m u l a t i o n t o t h e f a m i l y s y s t e m a n d w o r k i n g t o s t r e n g t h e n s u p p o r t s w i t h i n t h a t s y s t e m . D. E d u c a t i o n a n d T r a n s i t i o n B e n e f i t s : E d u c a t i o n a n d t r a n s i t i o n f u n c t i o n s f o r b o t h t h e c l i e n t a n d 74 c a r e g i v e r were s p e c i f i c b e n e f i t s that many of the case managers r e f e r r e d to i n the i n t e r v i e w s e s p e c i a l l y i n r e l a t i o n to i n s t i t u t i o n a l r e s p i t e beds. " F a m i l i e s could use r e s p i t e as a way to l e t the c l i e n t know what i t would be l i k e i f they went i n t o an intermediate care f a c i l i t y . They might enjoy i t . I am sure t h a t c l i e n t s sometimes f e e l that they are being pressured ( i n t o a care f a c i l i t y ) . " Case managers f e l t t h a t both the c l i e n t and the f a m i l y were able to l e a r n more about s e r v i c e s and options and that t h i s i n f o r m a t i o n would u l t i m a t e l y enable them to make more informed and a p p r o p r i a t e d e c i s i o n s . E. System S t i m u l a t i o n : As other s e c t i o n s of t h i s chapter have a l l u d e d t o , one of the primary ways that the respondents saw r e s p i t e s e r v i c e s b e n e f i t i n g f a m i l i e s was through the s t i m u l a t i o n and new energy that they b r i n g to the s i t u a t i o n . "The mere f a c t t h at there i s someone there and l i s t e n i n g and the f a c t t h at they are now a p a r t of our system begins to a l l e v i a t e the s t r e s s . . . t h e homemaker r e s p i t e or any s e r v i c e b r i n g s another person i n t o the home who can r e l a t e to the spouse and c l i e n t so there i s a s o r t of v i t a l i t y t h a t comes i n and generates some newness in t h a t house." This case manager d e s c r i b e d how adding a new person to the f a m i l y c a r e g i v i n g system or by extending the f a m i l y system boundary through the a d d i t i o n of a support s e r v i c e can open up 75 the system and a l l o w new energy and ideas to e n t e r . The system can then become l e s s r i g i d or c l o s e d and open to change and adaptat i o n . F. Emotional Support: S e v e r a l comments of the case managers r e f l e c t e d how r e s p i t e s e r v i c e s o f t e n i n d i r e c t l y provide emotional support to c l i e n t s and c a r e g i v e r s . Being connected to the formal h e a l t h care system o f f e r s reassurance to people. As one case manager s t a t e d , " i f they know they have a s a f e t y net they f e e l b e t t e r " . Another respondent b e l i e v e d that the p r o v i s i o n of companion r e s p i t e s e r v i c e s was a r e c o g n i t i o n of the need to provide emotional support. "God f o r b i d i f we d i d n ' t have r e s p i t e . I t sends a loud message to the p u b l i c that we don't have to have t h i n g s to do...we recognize the p s y c h o l o g i c a l aspect of long term i l l n e s s and the s t r e s s that t h a t puts on fami 1 i e s . . . there i s t h a t r e c o g n i t i o n of the need to c o n s i d e r one's mental h e a l t h . " T h i s s e c t i o n has summarized comments t h a t r e f l e c t the b e n e f i t s of r e s p i t e care s e r v i c e s as seen by these case managers. While c a r e g i v e r s were the primary focus, s e r v i c e s o f t e n b e n e f i t e d the c l i e n t as w e l l . A systems model p e r s p e c t i v e was e v i d e n t i n t h i s s e c t i o n i n the d i s c u s s i o n of e n e r g i z i n g and r e v i t a l i z i n g the f a m i l y system through expanding resources and boundaries. I n c r e a s i n g the resources and a b i l i t y of the c a r e g i v e r to cope and a d j u s t to t h e i r s i t u a t i o n was i d e n t i f i e d 76 as the major b e n e f i t of r e s p i t e s e r v i c e s . 3. B a r r i e r s t o Meet i n g Need i n the I n f o r m a l System: Throughout the i n t e r v i e w s t h e r e was c o n s i d e r a b l e d i s c u s s i o n a d d r e s s i n g the l a c k of f i t between s e r v i c e s and what i s a c c e p t a b l e or u t i l i z e d by f a m i l i e s . T h i s s e c t i o n f o c u s e s on the b a r r i e r s t o meeting need from w i t h i n the f a m i l y . I t becomes the t h i r d major theme a r i s i n g from the i n t e r v i e w s w i t h case managers. T h i s d i s c u s s i o n of b a r r i e r s i s p r e s e n t e d under the f o l l o w i n g c a t e g o r i e s : the r e l u c t a n c e of c a r e g i v e r s t o seek h e l p ; t h e i r r o l e e x p e c t a t i o n s ; c u l t u r a l and economic i n f l u e n c e s ; r e s i s t a n c e t o change; c o n f l i c t w i t h i n the i n f o r m a l system; and the l i m i t e d s k i l l s and knowledge, of many f a m i l i e s . A. R e l u c t a n c e of C a r e g i v e r s t o Seek Help C a r e g i v i n g r e s p o n s i b i l i t y was d e s c r i b e d as o f t e n b e i n g c a r r i e d by one person and shared o n l y t o a l i m i t e d degree. The case managers f e l t t h a t p a r e n t s a re v e r y h e s i t a n t t o seek h e l p from c h i l d r e n r e c o g n i z i n g the o t h e r f a m i l y demands t h e i r c h i l d r e n f a c e . They commented t h a t c a r e g i v e r s " f e e l g u i l t y about u s i n g up time of the s e v e r y busy younger p e o p l e " . Having f a m i l y a v a i l a b l e or w i l l i n g t o h e l p does not ensure t h a t the c a r e g i v e r i s r e c e i v i n g s u p p o r t . Case managers a l s o i d e n t i f i e d c u l t u r e and h i s t o r y as p l a y i n g major r o l e s i n d e t e r m i n i n g how r e c e p t i v e c a r e g i v e r s a re t o i n v o l v i n g t h e i r c h i l d r e n . As im m i g r a n t s , i t was f e l t t h a t many c a r e g i v e r s p l a c e a s t r o n g v a l u e on independence. They n e i t h e r e x pect nor want t o impose demands on t h e i r f a m i l y . One case manager d e s c r i b e d t h i s 77 a t t i t u d e as, "They have done a l o t f o r t h e i r f a m i l y and have not got the e x p e c t a t i o n of help being returned when they need i t " . Related to t h i s r e l u c t a n c e to ask f a m i l y f o r help, respondents noted a h e s i t a t i o n to seek help from the formal system. Role e x p e c t a t i o n s and g u i l t were d e s c r i b e d as b a r r i e r s to i n v o l v i n g o u t s i d e s e r v i c e s . One case manager s t a t e d that people b e l i e v e "you are p r i v a t e and independent and you don't seek help from o t h e r s " . F a m i l i e s a t t a c h a stigma to government help and were d e s c r i b e d as having a " r e l u c t a n c e or a n x i e t y about i n v o l v i n g the government". P r i d e and a fear of l o s i n g c o n t r o l were b e l i e v e d to prevent many people from seeking out help. "That means that you haven't coped and you don't want to admit t h a t . " B. Role E x p e c t a t i o n s : Role e x p e c t a t i o n s were a l s o d i s c u s s e d as a b a r r i e r to e f f e c t i v e l y meeting need. The s t r o n g sense of duty and r e s p o n s i b i l i t y f e l t by many of the c a r e g i v e r s and, f o r women, the e x p e c t a t i o n that t h e i r l i v e s focus on c a r e g i v i n g were noted by the case managers. " I t i s hard f o r some of these s e n i o r s to see t h a t they need to go ( i n t o a care f a c i 1 i t y ) - - i t i s t h e i r duty. I t was a bar g a i n s et at the time of the marriage." In the i n t e r v i e w s , case managers presented the r o l e of c a r e g i v e r as very important to the c a r e g i v e r ' s sense of s e l f and purpose and that to give i t up would i n v o l v e f e e l i n g s of g u i l t and 78 a b a n d o n m e n t . A s o n e r e s p o n d e n t n o t e d , " I t i s i m p o r t a n t t o be n e e d e d " . C. C u l t u r a l a n d E c o n o m i c I n f l u e n c e s T h e c a s e m a n a g e r s i n t e r v i e w e d d e a l w i t h a b r o a d v a r i e t y o f c u l t u r a l , e t h n i c a n d e c o n o m i c d i f f e r e n c e s . N e e d a n d d e m a n d may v a r y w i t h c u l t u r e a n d e c o n o m i c s t a t u s . "We d o g e t a l o t o f p e o p l e w i t h d i f f e r e n t e t h n i c b a c k g r o u n d s who p r e s e n t w i t h s i m i l a r p r o b l e m s a n d y e t t h e y a r e m u ch m o r e c o m p l e x s i m p l y b e c a u s e o f t h e e t h n i c o r i g i n s . " T h e s e v a l u e s a r e a l s o c h a n g i n g b e t w e e n g e n e r a t i o n s . T h e i s s u e o f c u l t u r e a n d e c o n o m i c s t a t u s was a v a r i a b l e t h a t was s e e n t o h a v e s i g n i f i c a n t i m p a c t o n a c c e p t a n c e o f s e r v i c e s . D. R e s i s t a n c e t o C h a n g e R e s p o n d e n t s d i s c u s s e d t h e r e l u c t a n c e t o s e e k h e l p a n d s u p p o r t a s l e a d i n g f a m i l i e s t o t h e p o i n t o f c r i s i s w h e r e t h e i r p e r s p e c t i v e a n d a b i l i t y t o c o n s i d e r a l t e r n a t i v e s i s c o n s t r a i n e d . " T h e y w a i t u n t i l t h e y a r e a t t h e e n d o f t h e i r r o p e b e c a u s e t h e y d o n ' t w a n t t o i n t e r f e r e o r a s k f o r e x t r a s e r v i c e . B u t , w h e n t h e y h a v e r e a c h e d t h a t p o i n t , t h e y a r e n o t w i l l i n g t o t r y a n y t h i n g e l s e . " M o s t o f t h e c a s e m a n a g e r s e x p r e s s e d s t r o n g c o n c e r n s a b o u t t h e i m p a c t t h i s d e l a y i n s e e k i n g s u p p o r t h a s o n t h e i r a b i l i t y t o i n t e r v e n e a n d p r o v i d e a s s i s t a n c e . T h e s t r e s s o f a c r i s i s a n d t h e c a r e g i v e r ' s o v e r i n v o l v e m e n t i n t h e c l i e n t ' s c a r e w e r e n o t e d a s f u r t h e r b a r r i e r s t o a c c e p t a n c e o f c h a n g e . 79 " I w o u l d s a y i t i s a l m o s t t h e m o r e h e a v y t h e c l i e n t g e t s , t h e m o r e t h e c a r e g i v e r s g e t o v e r w h e l m e d a n d c a n ' t a c c e p t m u c h c h a n g e . " C a s e m a n a g e r s e x p r e s s e d f r u s t r a t i o n o v e r t h e i r p e r c e p t i o n t h a t p e o p l e a r e s o m e h o w n o t a w a r e o f s e r v i c e s o r t h a t t h e s e r v i c e s a r e n o t r e a c h i n g t h e m i n a n a c c e p t a b l e w a y . E. C o n f l i c t W i t h i n t h e I n f o r m a l S y s t e m : E a r l i e r s e c t i o n s h a v e i d e n t i f i e d g a p s a n d c o n f l i c t b e t w e e n f o r m a l a n d i n f o r m a l s y s t e m s o f c a r e . T h e r e w e r e a l s o c o m m e n t s a b o u t t h e d y n a m i c s w i t h i n e a c h s y s t e m . W i t h i n f a m i l i e s , c o n f l i c t , c o m m u n i c a t i o n b a r r i e r s , v a l u e d i f f e r e n c e s a n d h i s t o r i c a l e v e n t s w e r e i d e n t i f i e d a s h a v i n g a n i m p a c t o n f a m i l y a t t i t u d e s a b o u t p r o v i d i n g c a r e a n d i n v o l v i n g o u t s i d e s u p p o r t s . T h e c a s e m a n a g e r s made c o m m e n t s l i k e , " i f i t h a s n o t b e e n a g o o d p a s t h i s t o r y , i t e x a c e r b a t e s i t ( t h e f a m i l y s t r e s s ) a n d m a k e s i t e v e n m o r e d i f f i c u l t t o w o r k w i t h t h e s e p e o p l e " a n d " p e o p l e c a n w i t h h o l d t h i n g s f r o m f a m i l y m e m b e r s " t h a t r e l a t e t o t h e n e e d t o c o n s i d e r f a m i l y d y n a m i c s . G e n e r a t i o n a l d i f f e r e n c e s e x i s t a n d " e l d e r l y p e o p l e f i n d i t v e r y d i f f i c u l t t o u n d e r s t a n d t h a t t h e c h i l d r e n h a v e d i f f e r e n t v a l u e s . " O t h e r r e s p o n d e n t s f e l t t h a t t h e l a c k o f u n d e r s t a n d i n g a n d a m b i g u i t y r e g a r d i n g w h a t t h e c a r e g i v e r r o l e s h o u l d be c a n make f a m i l y m e m b e r s r e l u c t a n t t o g e t i n v o l v e d . " P e o p l e a r e v e r y u p s e t b y t h a t p r o c e s s ( a l z h e i m e r 1 s ) a n d t h e y o f t e n d i s t a n c e t h e m s e l v e s f r o m t h e p a r e n t . " G i v e n t h e p r e s e n c e o f c o n f l i c t a n d v a l u e d i f f e r e n c e s , c a s e 80 m a n a g e r s c o m m e n t e d o n f a m i l y m e m b e r s e x p e r i e n c i n g d i s a g r e e m e n t o n how t o d e a l w i t h t h e s i t u a t i o n . F. L i m i t e d S k i l l s a n d K n o w l e d g e : T h e b e l i e f t h a t f a m i l i e s may h a v e l i m i t e d s k i l l s a n d k n o w l e d g e t o e n a b l e t h e m t o e f f e c t i v e l y m e e t t h e n e e d s t h a t t h e y a r e f a c e d w i t h was r e f l e c t e d i n c o m m e n t s s u c h a s , " E v e n i f t h e r e a r e a l o t o f f a m i l y m e m b e r s , t h e y o f t e n d o n ' t h a v e t h e s e s k i l l s T h e y h a v e h a d no e x p o s u r e o r e d u c a t i o n t o d e a l w i t h a d i f f i c u l t s i t u a t i o n . S o , t h e y f e e l t h a t s o m e t h i n g we f i n d i s a m i n o r p r o b l e m i s a m a j o r p r o b l e m f o r t h e m " . The p r e s e n t b u r e a u c r a c y a n d maze o f s e r v i c e s a n d p r o g r a m s was d e s c r i b e d a s v e r y c o m p l i c a t e d . C a s e m a n a g e r s b e l i e v e d t h a t f a m i l i e s o f t e n n e e d t o a c t a s l i a i s o n s a n d a d v o c a t e f o r t h e c o o r d i n a t i o n o f i n f o r m a l a n d f o r m a l c a r e . T h e i r c o m m e n t s r e i n f o r c e t h e n e e d f o r a c e r t a i n l e v e l o f e d u c a t i o n , a w a r e n e s s a n d s e l f a s s u r a n c e i n o r d e r t o f i l l t h i s r o l e . S e v e r a l r e s p o n d e n t s n o t e d t h e d i f f i c u l t y f a c e d b y i m m i g r a n t a n d l e s s e d u c a t e d f a m i l i e s w h e n d e a l i n g w i t h f o r m a l c a r e s y s t e m s . T h i s s e c t i o n h a s o u t l i n e d some o f t h e b a r r i e r s w i t h i n f a m i l i e s t h a t h i n d e r t h e i r a b i l i t y t o p r o v i d e a d e q u a t e c a r e a n d t o a c c e p t a n d l i n k w i t h f o r m a l c a r e s e r v i c e s . W h i l e some o f t h e s e b a r r i e r s a r i s e o u t o f l i m i t e d p e r s o n a l r e s o u r c e s , m a n y a r e r e l a t e d t o r o l e e x p e c t a t i o n s , v a l u e s , a n d c u l t u r a l e x p e c t a t i o n s . T h e s e a r e i m p o r t a n t f a c t o r s t o be c o n s i d e r e d i n t h e d e v e l o p m e n t o f a n y p r o g r a m t h a t h o p e s t o t r a n s c e n d some o f t h e s e b a r r i e r s . 81 4. I m p e d i m e n t s t o M e e t i n g R e s p i t e N e e d i n t h e F o r m a l S y s t e m D u r i n g t h e i n t e r v i e w s , c a s e m a n a g e r s d i s c u s s e d b a r r i e r s t o m e e t i n g r e s p i t e n e e d s t h a t o r i g i n a t e w i t h i n t h e f o r m a l s y s t e m o f h e a l t h c a r e s e r v i c e s a n d L T C i n p a r t i c u l a r . T h e s y s t e m o f f o r m a l s e r v i c e s , t h e way t h a t i t i s o r g a n i z e d a n d d e l i v e r e d a l s o o f f e r s many o b s t a c l e s t o e f f e c t i v e l y m e e t i n g n e e d . I m p e d i m e n t s d i s c u s s e d i n c l u d e d l i m i t e d a c c e s s a n d a v a i l a b i l i t y o f s e r v i c e s , j o b r e s t r i c t i o n s , t h e l o w p r i o r i t y o f m e n t a l h e a l t h , s t a f f q u a l i f i c a t i o n s , c o s t a n d f u n d i n g r e s t r a i n t s a n d s e r v i c e g a p s . A. L i m i t e d A c c e s s a n d A v a i l a b i l i t y o f S e r v i c e s : M a n y o f t h e p r e s e n t s e r v i c e s t h a t c a s e m a n a g e r s i d e n t i f i e d a s p r o v i d i n g r e s p i t e c a r e s u c h a s r e s p i t e b e d s , a d u l t d a y c a r e , h o m e m a k e r s , b o t h s h o r t t e r m a n d l i v e - i n , w e r e d e s c r i b e d a s h a v i n g l i m i t a t i o n s t h a t r e s t r i c t t h e i r a c c e s s t o t h e t a r g e t p o p u l a t i o n . R e s p i t e b e d s w e r e i d e n t i f i e d a s b e i n g i n s h o r t s u p p l y a n d d i f f i c u l t t o a c c e s s d u e t o l o n g w a i t l i s t s . " I t i s n ' t a l w a y s e a s y t o a c c e s s a r e s p i t e b e d a t t h e t i m e t h a t t h e f a m i l y m o s t n e e d s i t . R e s p i t e b e d s a r e u s u a l l y b o o k e d b y p e o p l e who a r e v e r y a w a r e o f w h a t t h e s y s t e m c a n o f f e r t h e m a n d a r e w e l l o r g a n i z e d a n d a r e a b l e t o b o o k w e l l a h e a d . " F o r t h o s e w i t h i m m e d i a t e n e e d s o r w i t h o u t t h e i n f o r m a t i o n o r o r g a n i z a t i o n a l s k i l l s t o p l a n w e l l i n a d v a n c e , r e s p i t e b e d s w e r e s e e n a s a r e s t r i c t e d o p t i o n . T i m e f a c t o r s a n d w a i t l i s t s a l s o e m e r g e d a s a n i s s u e i n t h e u s e o f a d u l t d a y c a r e f o r r e s p i t e . One r e s p o n d e n t n o t e d t h a t 82 f o r c l i e n t s a l r e a d y r e l u c t a n t t o g e t i n v o l v e d w i t h s o m e t h i n g new, a d e l a y c a n i n c r e a s e t h e i r a n x i e t y . "when p e o p l e a r e s h y a b o u t a c c e p t i n g t h e s e t h i n g s , i t i s n i c e t o be a b l e t o . . . f o l l o w up w i t h i t i m m e d i a t e l y s o t h e y d o n ' t h a v e t i m e t o g e t m o r e a n x i o u s a b o u t i t " T h e p r o g r a m ( d a y c a r e ) o r g a n i z a t i o n a n d l a c k o f f l e x i b i l i t y d e c r e a s e s i t s u s e f u l n e s s t o many p e o p l e . C a s e m a n a g e r s d i s c u s s e d t h e i n f l e x i b l e t i m e s c h e d u l e s , t h e l a n g u a g e b a r r i e r s f a c e d b y some c l i e n t s a n d t h e i n a p p r o p r i a t e n e s s a n d d i s r u p t i o n o f p r o v i d i n g s e r v i c e o u t s i d e t h e home f o r some c l i e n t s . L i v e - i n h o m e m a k e r s w e r e p o i n t e d o u t a s a n e e d e d r e s o u r c e t h a t i s i n s h o r t s u p p l y . When n e e d e d t h e y a r e o f t e n n o t a v a i l a b l e a n d i f a v a i l a b l e , t h e s y s t e m was d e s c r i b e d a s r e l u c t a n t t o u s e t h i s o p t i o n d u e t o c o s t c o n c e r n s . W h i l e t h e v a r i e t y o f s e r v i c e s t h a t a r e a v a i l a b l e i n c r e a s e s t h e c h a n c e o f s o m e t h i n g s u i t i n g t h e c l i e n t a n d c a r e g i v e r s i t u a t i o n , some c a s e m a n a g e r s i d e n t i f i e d a t e n d e n c y t o o v e r l o a d t h e f a m i l y . O f t e n f a m i l i e s h a v e a l i m i t e d a b i l i t y t o t a k e i n new i n f o r m a t i o n a n d make d e c i s i o n s w h e n t h e y f i r s t c o n n e c t w i t h L T C . " I t h i n k o n e o f t h e d a n g e r s o f o u r j o b i s t h a t we t e n d t o o v e r l o a d t h e m w i t h a n u m b e r o f o p t i o n s r a t h e r t h a n g i v i n g t h e m t h e i n f o r m a t i o n a n d g i v i n g t h e m t i m e t o s t u d y i t a n d t h i n k i t o v e r . " T h i s s t a t e m e n t i d e n t i f i e d a f i n e l i n e w h e r e p u t t i n g i n a n e x t r a s e r v i c e may c a u s e m o r e s t r e s s t o t h e f a m i l y s y s t e m t h a n i t 8 3 provides support. B. Job R e s t r i c t i o n s : Respite has been i d e n t i f i e d as encompassing both 'time out 1 s e r v i c e s as w e l l as c o u n s e l l i n g and education s e r v i c e s that have the p o t e n t i a l to strengthen the c a r e g i v e r ' s a b i l i t y to cope with ongoing care r e s p o n s i b i l i t i e s . Many case managers expressed f r u s t r a t i o n over the lack of time to do adequate assessments, to develop a rapport with t h e i r c l i e n t s or to give any kind of emotional support or c o u n s e l l i n g . "The main th i n g that I f i n d f r u s t r a t i n g i s the amount of work you have. You have so many c l i e n t s , you r e a l l y have to put a l i d on the amount of involvement that you give each f.ami l y . . . . you have to be hard on y o u r s e l f and sometimes hard on the c l i e n t and say that t h i s i s a l l that there i s . " Time l i m i t s a f f e c t the depth of assessments and understanding of the c l i e n t s and t h e i r f a m i l i e s . One case manager s t a t e d , "we probably don't know an eighth of what i t i s l i k e for them". Although emotional support and c o u n s e l l i n g were i d e n t i f i e d as major needs, case managers f e l t unable to address these areas i n any depth. "We are skimming the r o l e of c o u n s e l l i n g . I f you need c o u n s e l l i n g you are not going to be able to do i t i n one v i s i t . " They described t h e i r jobs as r e a c t i n g to c r i s i s s i t u a t i o n s . They admitted that they often have infrequent and b r i e f contact 84 w i t h m o s t f a m i l i e s . C. L o w P r i o r i t y o f M e n t a l H e a l t h : One c a s e m a n a g e r i d e n t i f i e d t h e l i p s e r v i c e t h a t i s p a i d t o e m o t i o n a l a n d m e n t a l h e a l t h n e e d s . " I d o n ' t k n o w how y o u c a n j u g g l e a c a s e l o a d a n d c o n c e n t r a t e o n a n y t h i n g e l s e . T h e y ( a d m i n i s t r a t i o n ) may be t e l l i n g u s , y e s , f e e l f r e e t o d o t h a t b u t t h e p r e s s u r e s a n d e x p e c t a t i o n s t o k e e p u p t h e w o r k l o a d i s n o t i n s u p p o r t o f t h a t k i n d o f a t t i t u d e . " T h e l o w p r i o r i t y g i v e n t o e m o t i o n a l a n d p s y c h o l o g i c a l n e e d s was r e f l e c t e d i n t h e s e p a r a t i o n i d e n t i f i e d b e t w e e n L T C a n d m e n t a l h e a l t h . No p r o f e s s i o n a l p o s i t i o n s o r p r o g r a m s e x i s t i n L T C t h a t a r e f o c u s e d on c o u n s e l l i n g o r m e n t a l h e a l t h . One r e s p o n d e n t n o t e d , " L o n g T e r m C a r e d o e s n ' t h a v e a s o c i a l w o r k e r o r c o u n s e l l o r r o l e . " F u n d i n g a n d j u r i s d i c t i o n i s s u e s w e r e a l s o r a i s e d a s a f a c t o r . " M e n t a l h e a l t h i n t h e h e a l t h d e p a r t m e n t i s n o n -e x i s t e n t ... B e c a u s e p e o p l e a r e t i e d i n t o t h e h e a l t h d e p a r t m e n t i t i s s o m e w h e r e w h e r e t h e y s h o u l d r e c e i v e h e l p . " T h i s c a s e m a n a g e r f e l t t h a t c o n t i n u i t y o f c a r e r e q u i r e d a c o m p r e h e n s i v e a n d h o l i s t i c a p p r o a c h t o h e a l t h f r o m L T C . S h e f e l t t h a t p e o p l e s h o u l d n o t be s e n t a w a y t o o t h e r s e r v i c e s i n o r d e r t o r e c e i v e m e n t a l h e a l t h s u p p o r t . T i m e a n d j o b r e s t r a i n t s l i m i t t h e u s e o f c o u n s e l l i n g s k i l l s t h a t e x i s t i n t h e d e p a r t m e n t . " I d o n ' t t h i n k t h a t t h e y g e t t h e f u l l b e n e f i t o f o u r 85 t r a i n i n g a n d p r o f e s s i o n a l s k i l l s , p a r t i c u l a r l y i n t h e s o c i a l w o r k a r e a i n r e g a r d s t o c a r e g i v e r s . G r o u p d y n a m i c s a n d how t o c o m m u n i c a t e a n d b e i n g a n a d v o c a t e f o r t h e s e p e o p l e a r e s k i l l s t h a t t h e y d o n ' t g e t t o a c c e s s v e r y m u c h . " D. S t a f f Q u a l i f i c a t i o n s : T h e l i m i t e d f l e x i b i l i t y o f s e r v i c e s a s w e l l a s l i m i t e d a c c e s s a n d t i m e w e r e a l l n o t e d t o i m p i n g e o n t h e a b i l i t y o f t h e L T C p r o g r a m t o m e e t t h e r e s p i t e n e e d s o f i t s c l i e n t s a n d t h e i r f a m i l i e s . I n t h e c a s e o f home b a s e d r e s p i t e s e r v i c e s , t h e q u a l i f i c a t i o n s o f t h e homernak i n g s t a f f was a n o t h e r c o n c e r n r a i s e d b y t h e r e s p o n d e n t s . T h e b u l k o f t h e r e s p i t e c a r e s e r v i c e s a r e p r o v i d e d b y h o m e m a k e r s w i t h l i m i t e d t r a i n i n g a n d l o w w a g e s . M a n y o f t h e s e h o m e m a k e r s w e r e d e s c r i b e d a s d e a l i n g w i t h c o m p l i c a t e d a n d s t r e s s f u l s i t u a t i o n s . S e v e r a l o f t h e c a s e m a n a g e r s i n t e r v i e w e d f e l t t h a t h o m e m a k e r s w e r e o f t e n p r o v i d i n g s e r v i c e b e y o n d w h a t c a n be e x p e c t e d g i v e n t h e i r t r a i n i n g a n d s a l a r y . " T h e l a d i e s w i l l g e t a t t a c h e d t o t h e h o m e m a k e r a n d i t . t h e r e f o r e i s s u p p o r t i v e f o r t h e m . A s l o n g a s we h a v e t h e s e k i n d o f r e l a t i o n s h i p s w i t h h o m e m a k e r s a n d c l i e n t s t h a t i s a l l v e r y g o o d , b u t we s h o u l d n ' t s e e h o m e m a k e r s a s p r o v i d i n g t h a t . . . i t i s t h e e m o t i o n a l s u p p o r t . I d o n ' t k n o w i f t h e g o v e r n m e n t i n a c t u a l f a c t r e c o g n i z e s t h a t . . . I d o n ' t k n o w i f t h e y w a n t t o p a y f o r t h a t . " F o r t h e h e a v y c a r e c l i e n t o r t h o s e w i t h m u l t i p l e p r o b l e m s t h e c a s e m a n a g e r s c o m m e n t e d o n t h e d i f f i c u l t y t h e y e n c o u n t e r w h e n 86 t r y i n g to f i n d s u i t a b l e homemakers, e s p e c i a l l y on short n o t i c e . E. Cost and Funding R e s t r a i n t s of Respite S e r v i c e s : Many of the case managers a t t r i b u t e d the short comings of LTC's r e s p i t e s e r v i c e s to cost c o n s t r a i n t s and c o n t i n u a l l y prefaced comments and recommendations with concerns over what would be f i n a n c i a l l y acceptable. I t i s , i n one person's words, " a l l in terms of the almighty d o l l a r and where they decide to spend i t " . The assessors found t h e i r jobs constrained by cost concerns. "I think that money always has to be an i s s u e . . . . a d m i n i s t r a t i o n needs to t r u s t that the assessor knows what needs to be done and t r u s t that i n the end i t i s going to be equal or l e s s ( i n terms of c o s t ) . " Decisions must be j u s t i f i e d on a cost b a s i s . Many f e l t that i n d i v i d u a l circumstances were not given f u l l c o n s i d e r a t i o n and that there was an over emphasis on short term c o s t s . Respondents i d e n t i f i e d the need to consider cost from a personal, program and s o c i e t a l p e r s p e c t i v e , both past and present. F. Service Gaps: A l l of the b a r r i e r s discussed lead to a s i t u a t i o n where despite the v a r i e t y of s e r v i c e s , there are s t i l l large gaps i n the. LTC program's r e s p i t e s e r v i c e s . As one case manager summar i zed, "There are l o t s of resources but they j u s t don't f i t i n sometimes. You j u s t can't plug people i n t o these s l o t s and 87 s a y t h a t t h i s p e r s o n s h o u l d be d o i n g r e a l l y w e l l b e c a u s e t h e y a r e h o o k e d u p . . . . I t s t i l l d o e s n ' t mean t h a t t h e p r o b l e m i s s o l v e d . M a y b e t h a t i s a n e g a t i v e f e e l i n g , b u t t h e r e i s s t i l l s o m e t h i n g m i s s i n g . " F o r p e o p l e w i t h m u l t i p l e p r o b l e m s , e m o t i o n a l n e e d s , o r a l a c k o f f a m i l y s u p p o r t t h e g a p s w e r e s e e n a s e s p e c i a l l y e v i d e n t . W o r k e r s q u e s t i o n e d t h e p u r p o s e a n d m a n d a t e o f L T C a n d t o w h a t e x t e n t t h i s f o r m a l s y s t e m s h o u l d be i n v o l v e d a n d t a k e r e s p o n s i b i l i t y f o r m e e t i n g n e e d s . Q u e s t i o n s w e r e r a i s e d w i t h c o m m e n t s s u c h a s , "When we t a l k a b o u t s u p p o r t , I am n o t s u r e w h a t we t r u l y m e a n . I t i s a m b i g u o u s a t t i m e s " a n d " I t i s a s i f I d o n ' t k n o w i f L T C i s t h e be a l l a n d e n d a l l e i t h e r " . I n s u m m a r y , b a r r i e r s t o m e e t i n g r e s p i t e n e e d s e m e r g e d a s a s t r o n g a n d c e n t r a l t h e m e . W h i l e some o f t h e i m p e d i m e n t s r e l a t e d t o f a m i l y c h a r a c t e r i s t i c s , many w e r e a s s o c i a t e d w i t h r e s o u r c e l i m i t a t i o n s , v a l u e s a n d p r i o r i t i e s o f t h e f o r m a l s y s t e m i t s e l f . T h e s h o r t a g e o f f u n d i n g , t i m e c o n s t r a i n t s , l i m i t e d t r a i n i n g a n d l a c k o f m e n t a l h e a l t h s u p p o r t s may be r e l a t e d t o v a l u e s a s s o c i a t e d w i t h a g e i s m a n d e c o n o m i c w o r t h o f r e c i p i e n t s . S u p p o r t s e r v i c e s a r e p r o v i d e d o u t o f a s y s t e m b a s e d o n a m e d i c a l m o d e l o f i n t e r v e n t i o n w h i c h c a n h a v e a n e g a t i v e i n f l u e n c e o n t h e p r i o r i t y g i v e n t o c h r o n i c n e e d s o f e l d e r l y p e r s o n s a n d t h e i r f a m i l i e s . 5 . T h e N e e d f o r C h a n g e H a v i n g r e v i e w e d w h a t t h e c a s e m a n a g e r s s e e a s t h e n e e d f o r r e s p i t e s e r v i c e s , t h e r o l e t h a t L T C s h o u l d t a k e , a n d t h e 88 b a r r i e r s s e e n w i t h i n f a m i l i e s a n d f o r m a l s e r v i c e s , t h i s n e x t s e c t i o n o u t l i n e s t h e a r e a s w h e r e i t was f e l t t h e p r o g r a m n e e d e d t o c h a n g e a n d d e v e l o p i n o r d e r t o be m o r e e f f i c i e n t a n d r e s p o n s i v e t o f a m i l y s u p p o r t n e e d s . T h e s u g g e s t i o n s a r e p r e s e n t e d u n d e r t h e f o l l o w i n g h e a d i n g s : e x p a n s i o n o f e x i s t i n g s e r v i c e s ; e d u c a t i o n a n d c o u n s e l l i n g f o r f a m i l i e s ; i n c r e a s e i n t h e c o m m u n i t y b a s e o f s e r v i c e s ; t h e s o f t s e l l o f s e r v i c e d e l i v e r y ; a n d t h e r e - e v a l u a t i o n o f r e s p i t e s e r v i c e p r i o r i t i e s . A. E x p a n s i o n o f E x i s t i n g S e r v i c e s : T h e s u g g e s t i o n s made f o r c h a n g e b y t h e c a s e m a n a g e r s f o c u s e d on e x p a n d i n g a n d r e a r r a n g i n g e x i s t i n g s e r v i c e s . T h i s i n c l u d e d h a v i n g m o r e r e s p i t e b e d s a v a i l a b l e i n f a c i l i t i e s e s p e c i a l l y f o r h i g h e r c a r e l e v e l s a n d a l l o w i n g f a m i l i e s t o u s e t h e s e r v i c e f o r l o n g e r t h a n t h e a l l o t t e d 30 d a y s i f n e e d e d . B y e x p a n d i n g t h e f l e x i b i l i t y a n d a v a i l a b i l i t y o f r e s p i t e b e d s , i t was f e l t t h a t t h e s e r v i c e c o u l d p r o v i d e o n g o i n g r e g u l a r r e l i e f i n s t e a d o f b e i n g r e s t r i c t e d t o v a c a t i o n r e l i e f . " I j u s t r e a l l y t h i n k t h a t i t h a s t o be i n d i v i d u a l . I f t h e y ( t h e f a m i l y ) n e e d m o r e t h a n t h i r t y d a y s , i f t h e y n e e d t w o m o n t h s . . . I w o u l d h o p e t h a t t h e s y s t e m w o u l d be a b l e t o a c c o m m o d a t e t h a t . " E m e r g e n c y a n d s h o r t n o t i c e r e s p i t e w e r e i d e n t i f i e d a s a r e a s w h e r e r e s p i t e b e d s c o u l d e x p a n d . T h i s w o u l d i n v o l v e a c h a n g e i n f o c u s a n d a new w a y o f a d m i n i s t e r i n g r e s p i t e p r o g r a m s . " I t h i n k y o u n e e d r e s p i t e c a r e s e r v i c e s a v a i l a b l e a t a d r o p o f a h a t . I d o n ' t k n o w how t h a t , c o u l d be s e t u p a n d I 89 d o n ' t k n o w w h e t h e r t h e g o v e r n m e n t w o u l d f i n d t h a t f i n a n c i a l l y f e a s i b l e b e c a u s e i f i t w a s n ' t f i n a n c i a l l y f e a s i b l e t h e y w o u l d n ' t e v e n l o o k a t i t . " W i t h i n e x i s t i n g s e r v i c e s o t h e r p r o g r a m s w e r e p o i n t e d o u t a s n e e d i n g e x p a n s i o n a n d m o r e f l e x i b i l i t y . S u g g e s t i o n s i n c l u d e d m o r e a d u l t d a y c a r e s p a c e s , m o r e f l e x i b l e h o u r s a n d c r e a t i n g s p e c i a l i z e d d a y c a r e p r o g r a m s f o r g r o u p s s u c h a s t h e d e m e n t e d . C a s e m a n a g e r s f e l t t h a t b e t t e r f u n d i n g w o u l d i m p r o v e t h e a b i l i t y o f t h e p r o g r a m t o a t t r a c t m o r e q u a l i f i e d h o m e m a k e r s . B. E d u c a t i o n a n d C o u n s e l l i n g f o r F a m i l i e s : E d u c a t i o n a n d c o u n s e l l i n g w e r e t w o new a r e a s t h a t c a s e m a n a g e r s f e l t t h a t t h e p r o g r a m s h o u l d d e v e l o p i n o r d e r t o s u p p o r t f a m i l y c a r e g i v i n g . C a s e m a n a g e r s d e s c r i b e d f a m i l i e s w i t h k n o w l e d g e a n d i n f o r m a t i o n a b o u t r e s o u r c e s a n d o p t i o n s a s b e t t e r e q u i p p e d t o i d e n t i f y t h e i r own n e e d s a n d r e q u e s t a p p r o p r i a t e s e r v i c e s . " I t h i n k t h a t t h e r e n e e d s t o be m o r e i n f o r m a t i o n f o r t h o s e p e o p l e who a r e r e l u c t a n t . T h e s e a r e t h e p e o p l e who r e a l l y n e e d i t b u t a r e n ' t u s i n g i t . P e o p l e who a r e i n f o r m e d a s k f o r i t a n d b o o k i t ( r e s p i t e ) e v e r y y e a r . " A w o r k e r n e e d s t o be s e n s i t i v e t o how much new i n f o r m a t i o n t h e f a m i l y c a n t a k e i n a t t h a t t i m e . S u g g e s t i o n s w e r e made f o r t h e d e v e l o p m e n t o f c o m p r e h e n s i v e w r i t t e n m a t e r i a l t o be g i v e n t o f a m i l i e s . " I h a v e n e v e r s e e n a n y t h i n g t h a t we c a n h a n d o u t t o a f a m i l y s h o w i n g w h a t r e s o u r c e s a r e a v a i l a b l e t o c a r e g i v e r s 90 f r o m t h e h e a l t h d e p a r t m e n t , how t o a c c e s s t h e m a n d w h a t t h e r u l e s a r e . T h e y n e e d t o h a v e s o m e t h i n g c o n c r e t e b e c a u s e I j u s t f i n d t h a t p e o p l e c a n ' t m a i n t a i n a l l t h a t i n f o r m a t i o n t h a t y o u l o a d o n t h e m . " C o u n s e l l i n g was a n o t h e r a r e a w h e r e s u g g e s t i o n s w e r e made f o r t h e p r o g r a m t o d e v e l o p m o r e r e s o u r c e s s o t h a t s u p p o r t t o f a m i l i e s w o u l d i n c l u d e m e n t a l a n d e m o t i o n a l s u p p o r t a s w e l l a s i n s t r u m e n t a l a s s i s t a n c e . "We c o u l d u s e a c o u n s e l l o r t h a t we c o u l d t a p i n t o . Y o u c o u l d g i v e some r e l i e f e m o t i o n a l l y t o s o m e o n e i f y o u h a d a c c e s s t o c o u n s e l l i n g . " C. I n c r e a s e t h e C o m m u n i t y B a s e o f S e r v i c e s : C o m m e n t s made b y c a s e m a n a g e r s s u p p o r t e d p r o v i s i o n o f r e s p i t e s e r v i c e s i n a l o c a l a n d f a m i l i a r e n v i r o n m e n t . C a r e g i v e r s u p p o r t g r o u p s w o u l d be l e s s a l i e n a t i n g a n d b e t t e r u t i l i z e d i f b a s e d a t l o c a l h e a l t h u n i t s a n d r u n b y c a s e m a n a g e r s f a m i l i a r t o t h e c a r e g i v e r s . " t h e y m i g h t f e e l m o r e c o m f o r t a b l e c o m i n g t o t a l k t o me i n a g r o u p w h e n t h e y k n o w s o m e o n e . A t VGH t h e y w a l k i n t o a r o o m f u l l o f s t r a n g e r s . " I t was f e l t t h a t h a v i n g s e r v i c e s u n i t b a s e d w o u l d a d d t o c o n t i n u i t y a n d i m p r o v e a c c e s s a s f a m i l i e s b e c a m e m o r e f a m i l i a r a n d c o m f o r t a b l e w i t h a v a r i e t y o f s e r v i c e s f r o m a s i n g l e s o u r c e . T r a n s p o r t a t i o n d i f f i c u l t i e s f a c e d b y m a ny e l d e r l y f u r t h e r l i m i t t h e i r u s e o f s e r v i c e s o u t s i d e t h e i r l o c a l c o m m u n i t y . R e s p i t e b e d s a n d a d u l t d a y c a r e a r e o t h e r s e r v i c e s t h a t a r e 91 o f t e n provided o u t s i d e the l o c a l community. Respondents' comments noted that t h i s s e p a r a t i o n from f a m i l i a r environments can make a s e r v i c e s t r e s s f u l and reduce i t s a c c e p t a b i l i t y to c l i e n t f a m i l i e s . "Everyone i n the h e a l t h department agrees t h a t s e r v i c e needs to be community based because that i s where people spend most of t h e i r l i v e s . " S e v e r a l statements supported the b e l i e f t h a t community based s e r v i c e s could be more f l e x i b l e and respon s i v e to l o c a l demand and circumstances. D. The S o f t S e l l of S e r v i c e D e l i v e r y : To t h i s p o i n t d i s c u s s i o n has focused on the need to expand and add s e r v i c e s but suggestions a l s o addresed the need to change the way r e s p i t e need i s assessed and s e r v i c e s i n t r o d u c e d . Case managers t r y to be s e n s i t i v e to the unique s t r e s s e s faced by i n d i v i d u a l f a m i l i e s . "I t h i n k t h a t we need to be i n n o v a t i v e about what we do i n the way of o f f e r i n g r e s p i t e . I t needs to be t a i l o r made fo r each s i t u a t i o n . We have to take i n t o account how they p e r c e i v e t h i n g s . " Family involvement and l i m i t a t i o n s were r e c o g n i z e d . The way th a t s e r v i c e s are introduced was another important f a c t o r i n c r e a t i n g a c c e p t a b l e and i n d i v i d u a l care p l a n s . I t was f e l t t h a t s e r v i c e s can be p e r c e i v e d as i n v a s i v e and overwhelming and can lead to the c a r e g i v e r withdrawing. As one case manager commented, i t i s important not to "bombard them with options so 92 that they f e e l t h a t t h e i r l i v e s have been invaded". I t was recommended that s e r v i c e s be introduced g r a d u a l l y as the case managers gather more i n f o r m a t i o n about the f a m i l y and the f a m i l y becomes more comfortable with the involvement of s e r v i c e s . I n t e r v e n t i o n should begin with suggestions not p r e s c r i p t i o n s "I l i k e to give them options and l e t them ask f o r what they need...I won't push i t on them. They need to make t h e i r own d e c i s i o n s . " One case manager summarised the way she f e l t she works i n marketing terms. " I f you were to look at some s i t u a t i o n s i n case management and look a t a course i n s e l l i n g , i n some s i t u a t i o n s i t i s r e l a t e d . I f you are t r y i n g to s e l l an idea there i s the s o f t s e l l and the hard s e l l . A hard s e l l i s where the 'shoulds' come i n and people are completely put o f f by t h a t . " The product here i s d e s c r i b e d as support s e r v i c e s and t h i s product must respond to consumer demand. A hard s e l l or imposed d e f i n i t i o n of need was seen as i n a p p r o p r i a t e . E. Re-evaluate S e r v i c e P r i o r i t i e s : A common thread t h a t ran through many of the recommended changes was the need f o r increased f l e x i b i l i t y i n the way need i s assessed and the way t h a t r e s p i t e s e r v i c e s are organized and d e l i v e r e d . " E v e r y t h i n g has to bend to meet the need of the c l i e n t s and f a m i l i e s . " Case managers would l i k e to see "more f l e x i b i l i t y i n the times and v a r i e t y of s e r v i c e s " and more 93 " i n n o v a t i v e people and money". In order to achieve t h i s kind of f l e x i b i l i t y and maximize i n n o v a t i v e p l a n n i n g , i t was f e l t t h a t job requirements and time p r i o r i t i e s needed to be r e e v a l u a t e d . Case managers wanted to spend more time with high r i s k and heavy care s i t u a t i o n s . "I r e a l l y wonder i f they shouldn't look at the issue of pe r s o n a l care on the program. I j u s t don't think i t takes a q u a l i f i e d person to do most of these annual reviews...I think our time would be b e t t e r spent out doing some c o u n s e l l i n g to f a m i l i e s . " Many f e l t t h a t much of t h e i r time i s spent t r y i n g to meet d e a d l i n e s and time requirements. A concern with c o s t and r e s t r i c t i o n s of the program seemed to be present throughout most of the d i s c u s s i o n s of needed changes i n the program. As one respondent s t a t e d , "I t h i n k the system i s p r e t t y good but I would hate f o r i t to ever become more r e s t r i c t i v e " . These concerns f u r t h e r r e i n f o r c e some respondents' f e e l i n g s t hat the program can at times be i n f l e x i b l e and unresponsive to c l i e n t and f a m i l y needs. These case managers f e l t t h a t one of the major c r i t e r i a and determining f a c t o r s of how programs are designed and d e l i v e r e d i s t h e i r c o s t . In summary, t h i s s e c t i o n has focused on many of the c r i t i c i s m s of r e s p i t e s e r v i c e s and recommendations f o r change. I t i s important to note t h a t most respondents expressed p o s i t i v e o v e r a l l impressions of the program. There was a general f e e l i n g 94 that s e r v i c e s were adequate and a v a i l a b l e to those i n need. A c e r t a i n l e v e l of d i s s a t i s f a c t i o n was accepted as present i n any system and necessary to keep a program a l e r t and s e l f - e x a m i n i n g . "I t h i n k the system works out w e l l . . . i n every system there are f a u l t s but the approach used here i s w e l l thought out." A focus on shortcomings may encourage growth but i t i s a l s o "good to look at the p o s i t i v e " . The program can a l s o l e a r n from what works. Most recommendations focused on r e o r g a n i z i n g or expanding e x i s t i n g s e r v i c e s i n order to improve a c c e s s a b i 1 i t y . The concern with c o s t f a c t o r s may have c o n s t r a i n e d the recommendations put forward. N e v e r t h e l e s s , many of the suggestions presented were aimed at g i v i n g the f a m i l y more c o n t r o l over t h e i r s i t u a t i o n by i n c r e a s i n g personal resources and a b i l i t y to choose a p p r o p r i a t e and f l e x i b l e s e r v i c e o p t i o n s . Caregiver Interviews The second group of people interviewed were the f a m i l y c a r e g i v e r s . T h i s s e c t i o n summarizes some of the comments and themes t h a t emerged from the a n a l y s i s of these focused i n t e r v i e w s with the sample of wives, daughters and a daughter-in-law. Once again, the data have been grouped i n t o broad c a t e g o r i e s that i n c l u d e s t r e s s e s faced by c a r e g i v e r s , t h e i r p e r c e p t i o n of t h e i r r o l e , i n f o r m a l supports, the e f f e c t s of c a r e g i v i n g , background f a c t o r s , the b e n e f i t s and shortcomings of s e r v i c e s and the need for change. L. s t r e s s e s C a r e g i v e r s i d e n t i f i e d a great number of s t r e s s e s i n t h e i r l i v e s . The perception- of s t r e s s f u l f a c t o r s v a r i e d between respondents. However, d e s p i t e these i n d i v i d u a l d i f f e r e n c e s there were some common themes or shared d i f f i c u l t i e s . These themes i n c l u d e the s t r e s s of t o t a l r e s p o n s i b i l i t y , coping with c o n f u s i o n , lack of c o n t r o l , emotional s t r a i n , f a m i l y c o n f l i c t , and r o l e e x p e c t a t i o n s . A. S t r e s s of T o t a l R e s p o n s i b i l i t y : Most c a r e g i v e r s found the t o t a l dependency and constant r e s p o n s i b i l i t y of c a r e g i v i n g one of the most m e n t a l l y and e m o t i o n a l l y d r a i n i n g aspects of t h e i r r o l e . T h e i r comments o f t e n r e f l e c t e d u n r e a l i s t i c e x p e c t a t i o n s that f a m i l i e s should be able to meet a l l p o s s i b l e needs. Comments such as, "I look a f t e r him 24 hours a day" and "I have to get e v e r y t h i n g ready for him" r e f l e c t e d the c a r e g i v e r s constant r e s p o n s i b i l i t y f o r 96 e n s u r i n g that t h e i r f a m i l y member's needs are met. One respondent summarized the s t r e s s of c a r e g i v i n g as, "I think that p r o v i d i n g care f o r your f a m i l y member i s more s t r e s s f u l than abandoning them i n a care f a c i l i t y " . R e l ated to the is s u e s of constant r e s p o n s i b i l i t y and the c l i e n t ' s c o n f u s i o n were v a r i o u s p h y s i c a l and emotional s t r a i n s Sleep p a t t e r n s , s a f e t y concerns, and medical c o n d i t i o n s were a l l p e r c e i v e d to add to the s t r e s s of the respondents. The c a r e g i v e r s d e s c r i b e d themselves as 'night a t t e n d a n t s ' , " s u p e r v i s o r s ' and "medical o f f i c e r s ' of the home. Proper s l e e p and r e s t had a s i g n i f i c a n t impact on the c a r e g i v e r ' s a b i l i t y to cope. "She goes to the t o i l e t at a l l hours. You're up a l l n i g h t and don't get much s l e e p . I t i s the most s t r e s s f u l t h i n g I have ever done." The r e s p o n s i b i l i t y f o r care was portrayed as inescapable even at n i g h t . There was no break or r e l i e f . I f the c l i e n t was confused, as many of the care r e c e i v e r s i n t h i s study were, the c a r e g i v e r f e l t t h a t he or she must c o n s t a n t l y s u p e r v i s e the c l i e n t and ensure t h a t he or she does not a c t i n a way that i s harmful to himself or o t h e r s . Wandering, g e t t i n g l o s t and concerns about the unsafe use of stoves and he a t i n g a p p l i a n c e s were a l l r a i s e d as major i s s u e s f o r these c a r e g i v e r s . The i l l and i n f i r m c l i e n t o f t e n s u f f e r e d from m u l t i p l e medical c o n d i t i o n s . The c a r e g i v e r faced the r e s p o n s i b i l i t y of 9 7 monitoring these s e r i o u s and sometimes l i f e t h r e a t e n i n g s i t u a t i o n s . The s t r e s s on the c a r e g i v e r was in c r e a s e d by t h i s added task . "He keeps g e t t i n g these i n f e c t i o n s . He i s on. a n t i b i o t i c s and then o f f them a g a i n . " "I'm s c a r e d . She has to take those p i l l s f o r e p i l e p s y " These c a r e g i v e r s f e e l r e s p o n s i b l e f o r i d e n t i f y i n g problems and seeking proper help. B. Coping With Confusion: Mental c o n f u s i o n or d i s o r i e n t a t i o n of the c l i e n t was seen as another common s t r e s s . The c a r e g i v e r s presented themselves as t a k i n g r e s p o n s i b i l i t y f o r the r e l a t i v e , a n t i c i p a t i n g t h e i r needs and p r o t e c t i n g them from harming themselves. D i s c u s s i o n s addressed communication impairment t h a t leaves the c a r e g i v e r "wondering j u s t much he i s aware o f " . Many c a r e g i v e r s d e s c r i b e d t h e i r schedules as responding to the c l i e n t ' s a c t i o n s and need for o r i e n t a t i o n . They found t h a t the c o n f u s i o n can lead to ag g r e s s i v e or embarrassing behavior by the f a m i l y member t h a t can be d i f f i c u l t f o r them to d e a l with. "Sometimes h i s mood i s good and sometimes bad. When bad he locks the door and y e l l s f o r hel p . I am very scared about t h a t because i f the neighbors hear." If the c l i e n t was confused, the c a r e g i v e r f e l t t h a t he or she c o u l d not leave the c l i e n t alone. The f e e l i n g of being trapped and t o t a l l y r e s p o n s i b l e was r e f l e c t e d i n statements such as "I can't leave him alone . I f I go, I have to rush" and "We 98 cannot leave Dad on h i s own here for 10 minutes". C. Lack of C o n t r o l : The i n a b i l i t y to escape the s i t u a t i o n or seek other options l e f t the c a r e g i v e r f e e l i n g trapped and out of c o n t r o l . One c a r e g i v e r s t a t e d " A c t u a l l y we have no c h o i c e " when d e s c r i b i n g how they choose to de a l with c a r e g i v i n g . U n p r e d i c t a b i l i t y was a major f a c t o r that c o n t r i b u t e d to the c a r e g i v e r s ' lack of c o n t r o l . The c a r e g i v e r s d e s c r i b e d themselves as s u b j e c t to constant changes i n the c l i e n t ' s s i t u a t i o n and needs. These changes could be u n p r e d i c t a b l e and the c a r e g i v e r s f e l t i t necessary to a n t i c i p a t e and a d j u s t to c o n t i n u a l f l u c t u a t i o n s . "One week something happens so you f i g u r e out a way of g e t t i n g around i t . But, you no sooner s t a r t implementing the new way then have to change because something e l s e has happened. I t i s t h i s constant change." The c a r e g i v e r s r e l a t e d attempts to encourage r o u t i n e s and some p r e d i c t a b i l i t y t h a t were o f t e n q u i c k l y negated. The c l i e n t s can i n c r e a s e the s t r e s s f e l t by the c a r e g i v e r s by r e s i s t i n g changes or acceptance of hel p . They may not want to go to a d u l t day care or use a r e s p i t e bed. They may not want someone e l s e coming i n t o the home. Exposure to change can be very u p s e t t i n g f o r the confused c l i e n t . Some c a r e g i v e r s i d e n t i f i e d t h i s kind of r e s i s t a n c e and the impact i t had i n f u r t h e r r e d u c i n g the options a v a i l a b l e to them. The c a r e g i v e r s r e l a t e d t h a t the pace and schedule of the day was s e t by the c l i e n t s and t h e i r needs and that the c a r e g i v e r s must c o n t i n u a l l y a d j u s t to the c l i e n t s . One c a r e g i v e r s t a t e d , " e v e r y t h i n g must be very l e i s u r e l y f o r her". Another respondent s t a t e d "I hear the same s t o r y f o r 47 years and I have to pretend t h a t I haven't heard i t before...He i s very stubborn". P a t i e n c e was i d e n t i f i e d as a necessary t r a i t to enable them to d e a l with t h e i r r o l e . D. Emotional S t r a i n : Faced with the constant r e s p o n s i b i l i t y , u n p r e d i c t a b i l i t y and lack of c o n t r o l , many c a r e g i v e r s experienced a great d e a l of mental s t r e s s . "I was scared to go to bed. So I was awake and s l e e p y and t i r e d and cranky with mama. I hated to be cranky with her . " When ou t b u r s t s or negative r e a c t i o n s occurred, the c a r e g i v e r responded with f e e l i n g s of g u i l t and reproach. I s o l a t i o n can be s t r e s s f u l and even lead to p h y s i c a l symptoms. One c a r e g i v e r was able to r e l i e v e high blood pressure problems through the use of r e s p i t e . " I t i s j u s t the boredom of being around him a l l the time. He t h i n k s I should be s i t t i n g here with him a l l the t i m e . . . I t gets to the p o i n t of i r r i t a t i o n . " Many found the lack of s t i m u l a t i o n and monotony d i f f i c u l t to cope with. C a r e g i v e r s admitted t h a t " e m o t i o n a l l y , i t i s q u i t e d r a i n i n g " . 100 E. Family C o n f l i c t : As t h i s s e c t i o n has i n d i c a t e d , c a r e g i v i n g can be a very s t r e s s f u l e x perience. For some respondents, t h i s s t r e s s was exacerbated by p r e - e x i s t i n g f a m i l y c o n f l i c t and c o n f l i c t i n g demands. Respondents i d e n t i f i e d long s t a n d i n g f a m i l y c o n f l i c t s t h a t were heightened by the demands of c a r i n g f o r t h e i r r e l a t i v e . Other f a m i l i e s experienced c o n f l i c t and d i f f e r e n c e s of o p i n i o n r e g a r d i n g how care should be p r o v i d e d . M u l t i p l e f a m i l y demands were d e s c r i b e d as competing a g a i n s t each other. One f a m i l y c o u l d not care f o r both mother and f a t h e r at home and had to make a c h o i c e . For middle g e n e r a t i o n c a r e g i v e r s with c h i l d r e n of t h e i r own, the demands of being a parent competed with a sense of f i l i a l r e s p o n s i b i l i t y . F. Role E x p e c t a t i o n s : Role e x p e c t a t i o n s and r o l e changes can be a cause of s t r e s s . The c a r e g i v e r s found themselves assuming new r e s p o n s i b i l i t i e s and d u t i e s t h a t were p r e v i o u s l y handled by the c l i e n t or having to complete tasks that they f e l t were not a p p r o p r i a t e f o r them to c a r r y out. T h i s c a r e g i v e r f e l t t h a t she was being f o r c e d to do t h i n g s t h a t she was not c o m f o r t a b le. "When I give him a shower, that to me i s something. I am a woman and he i s a man. If you l i k e or not you have to do i t and you f e e l some kind of r e p u l s i o n . " In summary the r o l e of c a r e g i v e r i s v a r i e d and as i n d i v i d u a l as the s t r e s s e s and demands t h a t i t e n t a i l s . What people p e r c e i v e as w i t h i n t h e i r a b i l i t y to d e a l with and what i s 101 seen to be s t r e s s f u l i s o f t e n c l o s e l y connected to t h e i r p e r c e p t i o n of t h e i r r o l e and what i t e n t a i l s . T h i s s e c t i o n has o u t l i n e d a number of p h y s i c a l and task r e l a t e d sources of s t r e s s as w e l l as s t r e s s e s r e l a t e d to emotional and i n t e r p e r s o n a l f a c t o r s . These c a r e g i v e r s o f t e n face m u l t i p l e demands with l i m i t e d r e s o u r c e s . The gap between what i s p e r c e i v e d as a demand and the a b i l i t y to d e a l with t h a t demand r e s u l t s i n a s t r e s s f u l and high r i s k c a r e g i v i n g s i t u a t i o n . 2. C a r e g i v e r ' s P e r c e p t i o n of T h e i r Role This s e c t i o n p r o v i d e s a more d e t a i l e d examination of how many of the respondents p e r c e i v e d t h e i r r o l e as c a r e g i v e r . Most c a r e g i v e r s saw themselves as the primary support f o r the c l i e n t . Although the d i s c u s s i o n of t h e i r r o l e focused on p h y s i c a l and in s t r u m e n t a l t a s k s , there was some r e c o g n i t i o n of the mental or emotional aspects of being a c a r e g i v e r . T h i s s e c t i o n i s d i v i d e d under headings of o b l i g a t i o n , r o l e r e s p o n s i b i l i t i e s , high personal e x p e c t a t i o n s , f u n c t i o n a l aspects of r o l e for c a r e g i v e r , i d e n t i f i e d l i m i t a t i o n s and p o s i t i v e concern f o r the c l i e n t . A. O b l i g a t i o n : A s t r o n g sense of o b l i g a t i o n was f u e l e d by c u l t u r a l and value i n f l u e n c e s . Respondents r e f e r r e d to f i l i a l r e s p o n s i b i l i t i e s and m a r i t a l vows r e i n f o r c i n g t h e i r f e e l i n g s of duty. " I f I would leave him I would f e e l g u i l t y because I f e e l t h a t i f I took on l o o k i n g a f t e r him, I should be here. A l o t of i t has to do with whether you want to look a f t e r 102 them--whether i t i s something that you want to do or you f e e l t h a t i t i s a duty." T h i s c a r e g i v e r f e l t t h a t she had made a commitment and must now s t r u g g l e i n order to be comfortable with s h a r i n g any of the r e s p o n s i b i l i t y . For other c a r e g i v e r s , the choice was p e r c e i v e d l e s s v o l u n t a r y but s t i l l t i e d to a sense of duty. "I have ended up with t h i s not so much v o l u n t a r i l y but because of the s i t u a t i o n . . . I knew that my parents would be happier here than i n a nu r s i n g home." F e e l i n g s a s s o c i a t e d with f i l i a l r e s p o n s i b i l i t y and a b e l i e f i n r e c i p r o c i t y of c a r e g i v i n g were r e f l e c t e d i n some of the c a r e g i v e r s ' comments about o b l i g a t i o n . One c a r e g i v e r d e s c r i b e d h e r s e l f as "a product of the o l d e t h i c . You repay what you get". She f e l t t h a t her mother had made many s a c r i f i c e s d u r i n g her l i f e and was d e s e r v i n g of the care she now r e c e i v e d . Some of the respondents a s s o c i a t e d t h e i r sense of o b l i g a t i o n with the absence of anyone e l s e to take the r e s p o n s i b i l i t y . They feared t h a t i f they d i d not provide the care no one e l s e would do so. " I f I don't do i t who i s going to do i t ? " A l l of the c a r e g i v e r s f e l t some sense of o b l i g a t i o n , e i t h e r v o l u n t a r y , c u l t u r a l l y i n f l u e n c e d or fo r c e d upon them. G u i l t and resentment were some of the negative outcomes of t h i s sense of duty. Many wished other f a m i l y members would share the o b l i g a t i o n and thus make t h e i r s i t u a t i o n l e s s r e s t r i c t i v e and more bea r a b l e . However, most c a r e g i v e r s admitted that they were 103 p r o v i d i n g care out of much more than a sense of o b l i g a t i o n . A s t r o n g sense of c a r i n g and a f f e c t i o n was i d e n t i f i e d i n many of the r e l a t i o n s h i p s . B. Role R e s p o n s i b i l i t i e s : When asked to d e s c r i b e the r e s p o n s i b i l i t i e s of t h e i r r o l e as c a r e g i v e r s , most focused on the p h y s i c a l and i n s t r u m e n t a l t a s k s . Long d e s c r i p t i o n s d e t a i l e d the events and r o u t i n e s of the day and the tasks t h a t had to be performed. "I give him a sponge bath every day but u s u a l l y I get him to go i n t o the bathroom. I t i s a small room so he has to s i t on the t o i l e t while I give him a sponge bath. Then I b r i n g him out and he has h i s b r e a k f a s t . I feed him h i s p o r r i d g e because he can't manage anything l i k e t h a t . Toast he can manage. Lunch time I give him soup and a sandwich. I w i l l feed him the soup." This kind of task by task d e s c r i p t i o n was common. The c a r e g i v e r s tended to take p e r s o n a l r e s p o n s i b i l i t y f o r i d e n t i f y i n g and meeting a l l needs. "Last n i g h t a f t e r dinner I wasn't quick enough g e t t i n g him i n there (to the bathroom). He j u s t c o u l d n ' t make i t . " Thi s c a r e g i v e r was blaming h e r s e l f f o r not responding and r e c o g n i z i n g the c l i e n t ' s need q u i c k l y . The. c a r e g i v e r seemed to accept a kind of t o t a l , all-encompassing r e s p o n s i b i l i t y f o r the welfare of the c l i e n t t h a t was not always c l e a r l y i d e n t i f i e d i n t h e i r d e s c r i p t i o n of i n s t r u m e n t a l t a s k s . C a r e g i v e r s saw t h e i r r e s p o n s i b i l i t y i n v o l v i n g a l l aspects of the c l i e n t s care and 104 w e l l being. C. High Personal E x p e c t a t i o n s : T h i s kind of t o t a l care that the c a r e g i v e r s saw themselves r e s p o n s i b l e f o r was d i s c u s s e d i n r e l a t i o n to the high e x p e c t a t i o n s that many of them had of themselves. These e x p e c t a t i o n s were o f t e n a s s o c i a t e d with a f f e c t i o n a t e t i e s and a b e l i e f t h a t f a m i l i e s should be s e l f - s u f f i c i e n t . "We love them. I t hasn't been bad y e t . We can s t i l l handle i t and as long as we can handle i t and cope, we w i l l do as we have...It i s a great help (LTC s e r v i c e s ) but not the main l i n e . The main l i n e i s the f a m i l y . " "I t h i n k t h a t we have i t too good i n t h i s country. A l l I have to do i s phone up to get h e l p . " Many of the c a r e g i v e r s had low e x p e c t a t i o n s of help from the formal system of s e r v i c e s . They f e l t t h a t the f a m i l y had primary r e s p o n s i b i l i t y and should be g r a t e f u l f o r any a s s i s t a n c e t h a t made t h e i r job e a s i e r . E x p e c t a t i o n s a l s o v a r i e d w i t h i n f a m i l i e s and had an impact on the c a r e g i v e r ' s a b i l i t y to cope. "I t h i n k t h a t when people are l i v i n g t o g e t h e r , everyone have to give up something to make i t e a s i e r . " This f a m i l y expected and was prepared f o r many changes i n t h e i r l i f e . Other respondents d e s c r i b e d themselves as l e s s prepared for the adjustments they had to make. In one s i t u a t i o n a husband and wife d i s a g r e e d over how much they should s a c r i f i c e f o r the care of a parent. 105 D. F u n c t i o n a l Aspects of Role For C a r e g i v e r : Comments of the c a r e g i v e r s o f t e n pointed to the stake they had i n the r o l e they were f i l l i n g and t h e i r r e l u c t a n c e to give up r e s p o n s i b i l i t y or separate from the c l i e n t . Many put the needs and wishes of the c l i e n t above t h e i r own. '"My mother was on the w a i t i n g l i s t f o r a n u r s i n g home, but when the time came I asked my mother and she s a i d she wasn't ready, so I s a i d OK. I am not going to f o r c e her." For c a r e g i v e r s who had been i n v o l v e d with the c l i e n t and t h e i r care f o r many years a fear was a s s o c i a t e d with s e p a r a t i o n . One c a r e g i v e r became very emotional when asked about l e a v i n g her mother alone, even f o r a few hours. She f e l t t h a t much of her purpose i n l i f e was t i e d up i n the r o l e of c a r e g i v e r . She d e s c r i b e d the d i f f i c u l t y t h a t she was e x p e r i e n c i n g making a d e c i s i o n about f a c i l i t y placement f o r her mother. T h i s c a r e g i v e r ' s d e s i r e to maintain her r o l e as long as p o s s i b l e was shared by many of the respondents. C o n t i n u i n g as c a r e g i v e r has many b e n e f i t s as w e l l as s t r e s s e s . Companionship, a f f e c t i o n and a sense of purpose were noted as very important by many of the women i n t e r v i e w e d . As one wife s a i d , "I want to keep him around as long as I can. I need some one to t a l k t o , too". E. I d e n t i f i e d L i m i t a t i o n s : Most c a r e g i v e r s were able to i d e n t i f y some kind of l i m i t a t i o n to t h e i r a b i l i t y to provide care f o r the c l i e n t . P h y s i c a l l i m i t a t i o n s were more r e a d i l y i d e n t i f i e d than mental or 106 emotional c a p a c i t i e s . D i f f i c u l t y with bathing, heavy housework and the c a r e g i v e r s ' own aging were some of the l i m i t a t i o n s ident i f i e d . "When i t comes t h a t I can't do i t anymore, when I have to feed him i n bed, look a f t e r him ni g h t and d a y . . . i f I can't make i t , they can't f o r c e me." Despite s t r o n g c u l t u r a l d i c t a t e s , t h i s woman was able to i d e n t i f y the l i m i t of her a b i l i t y to cope and the p o i n t when her own needs w i l l o v e r r i d e those of the c l i e n t and other f a m i l y members. In most of the i n t e r v i e w s , however, the women were g e n e r a l l y r e l u c t a n t to i d e n t i f y t h e i r own l i m i t a t i o n s . F. P o s i t i v e Concern f o r C l i e n t : C a r e g i v e r s i n t h i s study were c l o s e l y attuned to the c l i e n t ' s needs and d e s i r e s . They d e s c r i b e d themselves t a k i n g on r e s p o n s i b i l i t y f o r the q u a l i t y of l i f e experienced by the c l i e n t . T h e i r comments showed an a p p r e c i a t i o n f o r the p e r s o n a l i t y and i n d i v i d u a l i t y of the c l i e n t both past and presen t . T h i s c l o s e concern with the p e r c e p t i o n and needs of the c l i e n t a l s o l i m i t e d what the respondents viewed as acc e p t a b l e care o p t i o n s . " I t i s t h r e a t e n i n g to him and I don't l i k e to put him under th a t p r e s s u r e . I know th a t i t would break him up i f I fo r c e d him to go. So I s t i c k i t out. I t i s n ' t worth i t to me. I'd r a t h e r put up with what I am doing now." Many of the c a r e g i v e r s b e l i e v e d t h a t i t was i n the c l i e n t ' s best i n t e r e s t s to be cared f o r at home. 107 "I f e l t she would never walk or do a n y t h i n g . I f e l t she had a b e t t e r chance to do that at home." In summary, t h i s s e c t i o n has touched on s e v e r a l ways i n which the c a r e g i v e r s p e r c e i v e d and r e a c t e d to t h e i r s i t u a t i o n s as c a r e g i v e r s . Many of the f a c t o r s d i s c u s s e d i n r e l a t i o n to the c a r e g i v e r s ' r o l e s impacted on the c o n t r o l that they were able to e x e r c i s e i n t h e i r own l i v e s and the l i v e s of the c l i e n t s . Some f e l t v ery trapped and imposed upon while others f e l t the r o l e had been assumed v o l u n t a r i l y . The c a r e g i v e r s a l s o v a r i e d i n t h e i r a b i l i t y to e x e r t i n f l u e n c e on t h e i r environment. Some were r u l e d by t h e i r v a l u e s , c u l t u r e and e x p e c t a t i o n s of themselves as w e l l as the c l i e n t ' s needs. Other's were able to take c o n t r o l through e s t a b l i s h i n g r o u t i n e s and support systems that enabled them to expand t h e i r l i v e s beyond the c a r e g i v i n g r e l a t i o n s h i p . 3. Informal Supports Support a v a i l a b l e from i n f o r m a l networks was mentioned by a l l of the respondents however, f r i e n d s and neighbors were seldom mentioned as a source of a s s i s t a n c e . For these f a m i l i e s , i n f o r m a l support seemed to mainly c o n s i s t of f a m i l y members. Th i s d i s c u s s i o n of f i n d i n g s i n t h i s s e c t i o n i s addressed under the headings of a v a i l a b i l i t y and l i m i t a t i o n s , types of support r e c e i v e d and r e l u c t a n c e to seek support. A. A v a i l a b i l i t y and L i m i t a t i o n s : The a v a i l a b i l i t y of f a m i l y support v a r i e d amongst the c a r e g i v e r s i n t e r v i e w e d . Some had e x t e n s i v e f a m i l y networks 1 0 8 c l o s e and i n v o l v e d while others d e s c r i b e d themselves as more i s o l a t e d and r e c e i v i n g very l i t t l e a s s i s t a n c e . Some of the f a m i l i e s showed a s t r o n g commitment to be s u p p o r t i v e and i n v o l v e d d e s p i t e other demands i n t h e i r l i v e s . Even when a l o t of f a m i l y support was i n v o l v e d , the primary c a r e g i v e r u s u a l l y assumed the c o o r d i n a t i n g r o l e . One daughter d e s c r i b e d her s i t u a t i o n as "I am the head o f f i c e and when I need help, I c a l l f o r h e l p " . Those without f a m i l y support f e l t i s o l a t e d . "Well i f you had a s i s t e r . I t i s not good being an only one at a time l i k e t h i s . I f I had a s i s t e r , she could take her sometimes at l e a s t to help me out." T h i s daughter f e l t t h a t her r o l e as c a r e g i v e r would be made • e a s i e r i f she had f a m i l y to share the r e s p o n s i b i l i t y . While f a m i l y was o f t e n nearby and attempted to be s u p p o r t i v e , respondents d e s c r i b e d l i m i t a t i o n s to how i n v o l v e d r e l a t i v e s could become. Some of these l i m i t a t i o n s r e l a t e d to d i s t a n c e , competing demands, r o l e e x p e c t a t i o n s , and l i m i t e d p e r s o n a l a b i l i t i e s . Some of the respondents i d e n t i f i e d networks that were aging and f a c i n g h e a l t h and i l l n e s s concerns of t h e i r own. In some f a m i l i e s i t was the i l l and i n f i r m c a r i n g f o r each other. One c a r e g i v e r s t a t e d , "My son l i v e s i n D e l t a , my daughter i n C a l g a r y . My b r o t h e r s and s i s t e r s are o l d e r and one s i s t e r has a r t h r i t i s r e a l l y bad and a brother had a heart a t t a c k . I can't ask them. Three of my g i r l f r i e n d s a l l moved away." 109 For younger c a r e g i v e r s , there were o f t e n competing f a m i l y and work demands t h a t l i m i t e d the time and e f f o r t t h a t they could c o n t r i b u t e . " I f I wasn't working i t would be d i f f e r e n t . But, i t i s impossible to l i v e with one person working and so many people to look a f t e r . " V o l u n t a r y time a v a i l a b l e f o r f a m i l y r e l a t i o n s h i p s , e s p e c i a l l y those o u t s i d e the nuclear u n i t was p e r c e i v e d as l i m i t e d . Middle g e n e r a t i o n c a r e g i v e r s d e s c r i b e d themselves c a r i n g for both c h i l d r e n and parents. The o l d e r g e n e r a t i o n saw t h e i r c h i l d r e n spending most of t h e i r resources on meeting the b a s i c needs of the nuclear f a m i l y with l i t t l e l e f t over f o r the needs of e l d e r l y parents. Those who were i n v o l v e d and c a r i n g i d e n t i f i e d p h y s i c a l and emotional l i m i t s to t h e i r a b i l i t y to cope with the needs of the c l i e n t . T h i s c a r e g i v e r admitted that one person i s o f t e n unable to d e a l with a l l the demands i n v o l v e d i n c a r i n g f o r an e l d e r l y person. "There i s n ' t one of us, even though she i s as capable as she i s , there i s n ' t one of us alone that can look a f t e r her." Family h i s t o r y and c o n f l i c t were other f a c t o r s noted to l i m i t the support o f f e r e d to the c a r e g i v e r . While i n many cases f a m i l y are s u p p o r t i v e , there' were s i t u a t i o n s where f a m i l y r e l a t i o n s h i p s were d e s c r i b e d as d y s f u n c t i o n a l or c o n f l i c t u a l . For some c a r e g i v e r s the c o n f l i c t had a long h i s t o r y and was 1 1 0 exacerbated by the s t r e s s and demands of c a r i n g f o r an e l d e r l y r e l a t i v e . T h i s respondent t e l l s us how the c o n f l i c t a f f e c t s the support o f f e r e d and r e c e i v e d from her f a m i l y . "He don't l i k e me and I don't care because as soon as ma goes I never want to see him again....won't do anything because he f i g u r e s t h a t he i s h e l p i n g me and he hates me." B. Types of Support Received: For those with f a m i l y support, the nature of that involvement and a s s i s t a n c e v a r i e d . Although there was some d i s c u s s i o n of emotional support, the i n t e r v i e w s tended to focus on the i n s t r u m e n t a l tasks performed by f a m i l y members. F a m i l i e s were d e s c r i b e d as h e l p i n g with housework, shopping and errands and p r o v i d i n g r e l i e f by s t a y i n g with the c l i e n t and e n a b l i n g the c a r e g i v e r s to get out f o r a w h i l e . Some of the c a r e g i v e r s f e l t t h a t the support that f a m i l y members gave was based on an understanding and emotional attachment to the c l i e n t t h a t was d i f f i c u l t for others to d u p l i c a t e . "The f a c t t h a t she ( c a r e g i v e r ' s daughter) i s here i s very good. At supper time she says 'you are going to have c o l d tea a g a i n - - s i t down and have your supper' and then she takes over and looks a f t e r her dad." Other c a r e g i v e r s had l i m i t e d e x p e c t a t i o n s of t h e i r f a m i l y . "There i s only them two broth e r s of mine and how much help can they give you. They can't bath mama." Role e x p e c t a t i o n s have an impact here on the d u t i e s or r o l e s assumed by f a m i l y members. T h i s c a r e g i v e r sees p r o v i d i n g care I l l as p r i m a r i l y a female task. Regular i n f o r m a l c o n t a c t and emotional support were portrayed as unique aspects of f a m i l y involvement. C a r e g i v e r s found t h a t c o n t a c t with f a m i l y can provide s t i m u l a t i o n and mental support. "Yes, a l o t of emotional support because she i s f o r g e t f u l and a s k i n g questions over and over. I t i s nice to be able to have someone to ask questions of and t a l k t o . " Having someone to tu r n to who knows the c l i e n t and the c a r e g i v e r i n t i m a t e l y was seen to be a major advantage of the input provided by f a m i l y members. Many of the c a r e g i v e r s would have l i k e d to have had more support from t h e i r f a m i l i e s but recognized the demands and c o n s t r a i n t s faced by t h e i r f a m i l i e s . When asked i f she would l i k e more f a m i l y help, one c a r e g i v e r t y p i c a l l y responded, "Oh, yes, but I know that there i s no one t h a t i s able to any more". C. Reluctance to Seek Support: Given the l i m i t a t i o n s faced by f a m i l y networks, many c a r e g i v e r s were r e l u c t a n t to seek more help from t h e i r r e l a t i v e s . Statements of the respondents r e p e a t e d l y r e f l e c t e d an u n d e r l y i n g d e s i r e to maintain independence and some s e p a r a t i o n between the l i v e s of parents and grown c h i l d r e n . "The f a c t t h a t I have a daughter l i v i n g here helps a great d e a l . But, I don't l i k e to encroach on her time too much. She i s working a l l day every day." The c a r e g i v e r o f t e n f e l t i t was necessary to d e a l with the 112 burden alone and not to s h i f t i t to others i n any way. "I t h i n k that we a l l have problems and I don't thi n k that we should f o r c e them on other people, unless you a b s o l u t e l y have no c h o i c e . " For t h i s daughter, c a r e g i v i n g was seen as something r e c i p r o c a l and she f e l t t h a t she had no r i g h t to ask f o r a s s i s t a n c e from other r e l a t i v e s . She b e l i e v e d t h a t i t was u n f a i r to ask people out s i d e the immediate f a m i l y to provide a s s i s t a n c e without some form of reimbursement. "You can't expect somebody to do something without some reimbursement." This c a r e g i v e r c o u l d not a f f o r d to pay p r i v a t e l y f o r hel p . The c l i e n t s were a l s o d e s c r i b e d as o f f e r i n g r e s i s t a n c e to many s e r v i c e o p t i o n s . Some c l i e n t s r e f u s e d to have s t r a n g e r s i n the home or ref u s e d to p a r t i c i p a t e i n programs ou t s i d e the home tha t c o u l d o f f e r the c a r e g i v e r s some r e l i e f . C a r e g i v e r s f e l t t h a t a fear of i n s t i t u t i o n a l i z a t i o n was the b a s i s f o r much of the c l i e n t s ' r e s i s t a n c e to formal programs. In summary, t h i s s e c t i o n has o u t l i n e d many of the b e n e f i t s and l i m i t a t i o n s of f a m i l y support. Given the c a r e g i v e r s ' r e l u c t a n c e to seek help, the amount of f a m i l y support t h a t does occur i s s u r p r i s i n g . In a l l of the s i t u a t i o n s i n c l u d e d i n t h i s study, i t was s t i l l one person, however, that assumed the bulk of c a r e g i v i n g r e s p o n s i b i l i t y . Reference to i n f o r m a l support and c a r e g i v i n g can be m i s l e a d i n g as c a r e g i v i n g r e s p o n s i b i l i t y i s u s u a l l y assumed by one primary c a r e g i v e r . 113 4. E f f e c t of C a r e g i v i n g on the Family Member When t r y i n g to understand the kind of supports t h a t people need, i t i s important to look at more than s t r e s s o r s , demands and a v a i l a b l e r e s o u r c e s . T h i s s e c t i o n addresses the p e r c e p t i o n s and p e r s o n a l r e a c t i o n s o£ i n d i v i d u a l c a r e g i v e r s to t h e i r s i t u a t i o n . Although each c a r e g i v e r i n t h i s study r e a c t e d i n an i n d i v i d u a l way to her s i t u a t i o n , there were many shared responses. These shared responses have been organized i n t o the f o l l o w i n g themes: lack of freedom; emotional responses; and e f f e c t of c a r e g i v e r p h y s i c a l h e a l t h . A. Lack of Freedom A f e e l i n g of being trapped and l a c k i n g freedom was expressed by many of the c a r e g i v e r s . The r e s p o n s i b i l i t y of t h e i r r o l e as c a r e g i v e r was seen as i n e s c a p a b l e . "I don't have any weekends or evenings o f f and I sometimes don't have any days o f f . I t i s every day around the c l o c k . " There are no h o l i d a y s or breaks and l i t t l e time away from t h e i r home and d u t i e s . A l l the c a r e g i v e r ' s time and e f f o r t was spent meeting f a m i l y needs. As one daughter-in-law s t a t e d , there i s "no time f o r our s e l v e s or f r i e n d s , j u s t f o r f a m i l y " . Some of the c a r e g i v e r s f e l t t h a t the impact on t h e i r l i v e s was t o t a l and beyond t h e i r c o n t r o l . One woman d e s c r i b e d her s i t u a t i o n as "my l i f e i s f i n i s h e d . I am time up". Another woman spoke of the f e e l i n g of being c o n f i n e d a g a i n s t her w i l l . "Sometimes I j u s t f e e l , j u s t l i k e ma says when she can't 114 get out th a t i t i s l i k e being i n j a i l . I f e e l t h a t I am i n j a i l sometimes." This woman f e l t bound by a sense of duty and r e s p o n s i b i l i t y to care f o r her mother. She saw h e r s e l f having no options and trapped i n a s i t u a t i o n t h a t she would l i k e to escape from. F e e l i n g that they had no choice or options i n t h e i r s i t u a t i o n was another f a c t o r t h a t c o n t r i b u t e d to the f e e l i n g of being trapped by t h e i r circumstances. One woman s t a t e d , " I f I want to or not, I have to do i t . U n t i l when? How much can I take?". Family members d e s c r i b e d how immediate needs and outsi d e f o r c e s such as a v a i l a b l e formal supports r u l e d t h e i r 1 i v e s . "You focus the e n t i r e day on what you have t o do and working that around when the homemaker w i l l be here." Many of these c a r e g i v e r s p e r c e i v e d themselves as r e a c t i n g to circumstances beyond t h e i r c o n t r o l . A lack of hope expressed by some c a r e g i v e r s exacerbated t h e i r f e e l i n g s of being trapped. "You can't see an out. I remember that my mother used to say she d i d n ' t mind l i s t e n i n g to me i f I was s i c k f o r two days, but i f I was s i c k f o r longer than t h a t she got fed up with that...When they are o l d , you can't see any hope...Now, i t seems t h a t i t i s a l l down h i l l . You can't look to t h i n g s g e t t i n g b e t t e r . " The f u t u r e was seen to hold o n l y g r e a t e r dependency and need f o r car e . The lack of a p o s i t i v e f u t u r e c r e a t e d a sense of 1 1 5 hopelessness f o r t h i s daughter. Many c a r e g i v e r s began to give up s o c i a l c o n t a c t s and f e l t unable to pursue a c t i v i t i e s t h a t they found e n j o y a b l e . " I t i s one year we have him. We go to only one p a r t y . We go somewhere, we take him. My husband i s worse. He don't want to leave him f o r even one minute...My l i f e i s very cut down." Having some pers o n a l and f r e e time was seen as very important. The lack of t h i s o p p o r t u n i t y was p e r c e i v e d to have an e f f e c t on the c a r e g i v e r ' s a b i l i t y to cope on an ongoing b a s i s . One c a r e g i v e r admitted, "I c o u l d n ' t cope with i t i f I d i d n ' t have help coming to l e t me out f r e e once i n a wh i l e " . Along with s o c i a l l i v e s , p e r s o n a l and f a m i l y r e l a t i o n s h i p s were a l s o a f f e c t e d by the demands of c a r e g i v i n g . For some f a m i l i e s the changes i n v o l v e d i n c a r i n g f o r an e l d e r l y r e l a t i v e were expected and adapted to but f o r others the e f f e c t was more negat i v e . "Since I have my f a t h e r - i n - l a w , my l i f e with my husband i s not the same. We are j u s t two people together and I am the maid f o r them...I am not f r e e to go out and enjoy a few hours with my husband." The s t r e s s and i s o l a t i o n f e l t by some people a f f e c t e d t h e i r p e rsonal l i v e s . T h i s c a r e g i v e r f e l t t h a t her marriage had s u f f e r e d and t h a t her l i f e was now t o t a l l y task o r i e n t e d . She f e l t powerless to change any of t h i s . 116 B. Emotional Responses: Given the lack of freedom and hopelessness p e r c e i v e d by many c a r e g i v e r s , a range of emotional responses emerged i n the i n t e r v i e w s . For many respondents, anger and resentment were the r e s u l t . " A f t e r a while you f e e l b i t t e r , r e s e n t f u l and you don't do ev e r y t h i n g you s h o u l d . . I t t i e s you down and you can't lead your own l i f e . " For other c a r e g i v e r s , the anger i s d i r e c t e d at f a m i l y f o r being unsupport i v e . "I am mad too at my s i s t e r f o r being t i e d up the way she i s when there i s not need f o r i t . " For some, d e p r e s s i o n arose from the constant s t r e s s and hopelessness they f e l t . One woman commented "I used to get so depressed or whatever with e v e r y t h i n g " . P s y c h o l o g i c a l responses to t h e i r s i t u a t i o n s a f f e c t e d the c a r e g i v e r s ' a b i l i t y to work and provide c a r e . C a r e g i v e r s i n t e r v i e w e d commented t h a t i n the end i t i s o f t e n the emotional l i m i t a t i o n s and the i n a b i l i t y to cope p s y c h o l o g i c a l l y with the demands of c a r e g i v i n g t h a t leads to breakdown and placement. "Everyone seems to come to the p o i n t where they have to r e s o r t to a care f a c i l i t y because t h e i r p s y c h o l o g i c a l shape i s out of whack." While c a r e g i v e r s admitted to t h e i r l i m i t a t i o n s and sought help at a c r i s i s p o i n t , s t r o n g g u i l t f e e l i n g were expressed by most of the women in t e r v i e w e d . A daughter d e s c r i b e d h e r s e l f 117 as, "much more s e l f i s h than my mother. I have a conscience that I hate. I have so much g u i l t . Sometimes when I lose p a t i e n c e with her I f e e l g u i l t y " . T h i s c a r e g i v e r f e l t g u i l t y f o r being human, making mistakes and e x p e r i e n c i n g j u s t i f i e d emotional responses to her s i t u a t i o n . G u i l t i n c r e a s e d the f e e l i n g of being trapped as the c a r e g i v e r s deemphasized t h e i r own needs and continued to take on t o t a l r e s p o n s i b i l i t y f o r the c l i e n t . " I f I go out f o r one hour, my f e e l i n g i s l i k e I am s t e a l i n g t h i s hour from him because i f I am not t h e r e , I don't know what w i l l happen." Many respondents questioned t h e i r a b i l i t y to provide adequate c a r e . They focused on the gaps and negative aspects of t h e i r a b i l i t i e s . One daughter t r i e d to encourage her mother's independence but was l e f t wondering "whether I make her do more than she should". T h i s constant s e l f c r i t i c i s m and high e x p e c t a t i o n s c o n t r i b u t e d to the f e e l i n g s of g u i l t and inadequacy. The s t r e s s and lack of p r e d i c t a b i l i t y a f f e c t e d many c a r e g i v e r ' s a t t i t u d e s towards t h e i r f u t u r e . The c a r e g i v e r s were " j u s t s o r t of going at i t b l i n d l y " and " l i v i n g from day to day to keep t h i n g s going". They o f t e n f e l t capable only of planni n g from day to day. To pl a n f u r t h e r was b e l i e v e d to be beyond t h e i r c o n t r o l . 118 C. E f f e c t on Caregiver P h y s i c a l Health: Many of the c a r e g i v e r s i n t h i s study were e l d e r l y and had h e a l t h l i m i t a t i o n s of t h e i r own. The constant demands and s t r e s s of c a r e g i v i n g can have f u r t h e r negative e f f e c t s on the h e a l t h of the c a r e g i v e r . P h y s i c a l i n j u r y and high blood pressure were two p h y s i c a l e f f e c t s i d e n t i f i e d i n the i n t e r v i e w s . Given the age of many of the c a r e g i v e r s and t h e i r r e l u c t a n c e to i d e n t i f y t h e i r own needs and l i m i t a t i o n s , the p h y s i c a l e f f e c t s of the burden they face may have been under-represented. In summary, t h i s s e c t i o n has touched on the impact that f a m i l y c a r e g i v i n g can have on the primary c a r e g i v e r . Many of the e f f e c t s were r e l a t e d to the emotional and p s y c h o l o g i c a l w e l l - b e i n g of the c a r e g i v e r s . F e e l i n g s of hopelessness and lack of c o n t r o l were major themes throughout a l l of the i n t e r v i e w s . These comments f u r t h e r r e i n f o r c e the need f o r s e r v i c e s to address the resources and l i m i t a t i o n s of the c a r e g i v e r s when attempting to support community c a r e . 5. Background F a c t o r s The c a r e g i v e r s ' h i s t o r y and context are important f a c t o r s i n determining the s t r e n g t h s and needs of aging f a m i l i e s . A. H i s t o r y : Many c a r e g i v e r s have a long h i s t o r y of p r o v i d i n g care f o r the c l i e n t s and other f a m i l y members. Spouses have l i v e d with the c l i e n t s f o r many years and s e v e r a l of the daughters had spent most of t h e i r l i v e s l i v i n g with t h e i r parent. Often other f a m i l y members had been cared f o r i n the past. Many of these 119 women have spent most of t h e i r a d u l t l i v e s as c a r e g i v e r s . Along with a long h i s t o r y , many c a r e g i v e r s r e l a t e d that the c a r e g i v i n g r e l a t i o n s h i p had evolved g r a d u a l l y . The c a r e g i v e r had o f t e n a d j u s t e d to s l o w l y i n c r e a s i n g needs over a long p e r i o d of time. "He s t a r t e d with t h i s seven years ago. I t has been the l a s t two years t h a t we have had the homemakers and the nurse...Up u n t i l four years ago he was bike r i d i n g . . . I t comes on very g r a d u a l l y . " In the beginning the s i t u a t i o n was pe r c e i v e d as manageable. As i t g r a d u a l l y worsened, the c a r e g i v e r was sometimes unaware of the i n c r e a s e d s t r e s s and e f f e c t the s i t u a t i o n was having on them. With t h i s long h i s t o r y and l a r g e investment i n c a r e g i v i n g some c a r e g i v e r s o f f e r e d r e s i s t a n c e to out s i d e support. Some respondents were r e l u c t a n t to give up a r o l e that had been an important part of t h e i r l i v e s f o r many years. Most of the c a r e g i v e r s seemed to be very c l o s e l y attuned to the d e s i r e s and needs of the c l i e n t . Being i n t i m a t e l y f a m i l i a r with the c l i e n t was f e l t to enhance t h e i r a b i l i t y to respond to needs . "Others were l e s s used to our parents. I t took l e s s a d j u s t i n g f o r me. I was used to t h e i r i d i o s y n c r a c i e s . I have grown o l d with them." These c a r e g i v e r s b e l i e v e d t h a t the best care would come from someone who knew the c l i e n t w e l l . 120 B. Other F a c t o r s : Other iss u e s such as past f a m i l y c r i s e s , commitments, war and immigrant experiences, and c u l t u r a l e x p e c t a t i o n s were r a i s e d as f a c t o r s i n f l u e n c i n g the present day responses to c a r e g i v i n g and the i n c l u s i o n of formal supports. These were j u s t some of the background f a c t o r s t h a t emerged as important c o n s i d e r a t i o n s . The l i m i t e d i n f o r m a t i o n gathered i n these s i n g l e i n t e r v i e w s p o i n t s to the enormous need to c o n s i d e r the f u l l present and past context of the c l i e n t and t h e i r f a m i l y i n order to understand t h e i r needs and how to support them. 6. B e n e f i t s of Formal S e r v i c e s Many of the respondents expressed an a p p r e c i a t i o n f o r the support they r e c e i v e d . Some were r e l u c t a n t to express any d i s c o n t e n t and q u a l i f i e d comments with concerns r e g a r d i n g l i m i t a t i o n s of the s e r v i c e and p o s s i b l e u n r e a l i s t i c e x p e c t a t i o n s . Those b e n e f i t s i d e n t i f i e d i n c l u d e d i n s t r u m e n t a l a s s i s t a n c e , freedom, s t i m u l a t i o n , and emotional support. A. Instrumental A s s i s t a n c e : Most c a r e g i v e r s q u i c k l y i d e n t i f i e d the i n s t r u m e n t a l a i d r e c e i v e d through LTC. A s s i s t a n c e i n c l u d e d , "come and give him a bath and something to eat", "comes and cleans up here once a week", and "came to help me give him a shower". Taking over household tasks and a s s i s t i n g with p h y s i c a l l y d i f f i c u l t d u t i e s were regarded as h e l p f u l r o l e s by t a k i n g away some of the burden and g i v i n g the c a r e g i v e r more time and energy to d e a l with other 1 2 1 i s s u e s . For some c a r e g i v e r s i t was the combination of f a m i l y and formal e f f o r t s that r e l i e v e d the burden. For one woman, the homemaker gave p e r s o n a l care while the f a m i l y d i d major housework and provided s o c i a l support. "when E l s i e comes the men wait i n bed u n t i l she get's here. She helps them with b r e a k f a s t , g i v e s them a bath, and gets them dressed. When E l s i e i s not here, Mom has to do t h a t . " Assuming some of the d a i l y tasks eased the constant s t r a i n . The c a r e g i v e r got a small r e p r i e v e from t o t a l r e s p o n s i b i l i t y . B. Freedom: Besides the in s t r u m e n t a l a s s i s t a n c e , s e r v i c e s allowed the c a r e g i v e r a l i t t l e freedom. Homemaker r e s p i t e , a d u l t day care and f a c i l i t y r e s p i t e a l l gave the f a m i l y members some time to pursue pe r s o n a l i n t e r e s t s and escape from the r e s p o n s i b i l i t y of c a r e g i v i n g . One daughter s t a t e d t h a t her mother can "shop, r e l a x and she doesn't have to thin k about what i s happening to them". Confidence i n the s e r v i c e was pointed out as e s s e n t i a l in order f o r the c a r e g i v e r to f e e l any r e a l r e l i e f or freedom. " G i v i n g me four hours twice a week--that means more than a n y t h i n g . T h i s g i r l i s very good with him. I don't have to worry i n the world when I go out. I f e e l so f r e e and easy because I know that she i s so. good to him." While h o l i d a y r e s p i t e was mentioned as h e l p f u l and allowed a more complete break, c a r e g i v e r s r e f e r r e d to the weekly and r e g u l a r r e s p i t e as most important. 122 C. S t i m u l a t i o n : S e r v i c e s were o f t e n seen as h e l p f u l due to t h e i r p r o v i s i o n of some s t i m u l a t i o n , new input and i n f o r m a t i o n . " I t i s some new people and a new v o i c e f o r him, not a l l the same....at l e a s t she (the c a r e g i v e r ) can t a l k with someone, we see each together everyday but at l e a s t she can see someone and t a l k about d i f f e r e n t t h i n g s . " C l i e n t s and c a r e g i v e r s were o f t e n i s o l a t e d and had l i m i t e d access to other people. S e r v i c e s were p e r c e i v e d as p r o v i d i n g s o c i a l c o n t a c t and emotional support. Another c a r e g i v e r d e s c r i b e d the new m o t i v a t i o n and energy she f e l t a f t e r being able to get out once or twice a week. "They d i d t e l l me t h a t I should have two days at l e a s t and I was glad of that because you have a d i f f e r e n t a t t i t u d e when you come back a f t e r being away from him f o r a few hours. I t does make a d i f f e r e n c e . You don't think i t would, but i t does. I t j u s t has s o r t of a new energy about i t . " By s e p a r a t i n g h e r s e l f f o r s h o r t periods t h i s wife was able to f e e l r e v i t a l i z e d and able to continue as a c a r e g i v e r . D. Emotional Support: Although more d i f f i c u l t to i d e n t i f y and a r t i c u l a t e , most c a r e g i v e r s d i d i d e n t i f y ways i n which the s e r v i c e s they r e c e i v e d provided emotional support. In an e a r l i e r s e c t i o n of t h i s chapter the emotional burden of c a r e g i v i n g was i d e n t i f i e d as a major source of s t r e s s . 123 "Oh i t i s the emotional. Since we have had the help from the government i t i s not that bad. Before i t was very very bad and Mom was at the breaking p o i n t . " Services gave t h i s c a r e g i v e r emotional support by easing the burden and p r o v i d i n g her with some freedom and something to look forward t o . For others, the s e r v i c e s helped improve s e l f -esteem and reduce f e e l i n g s of depression. Consistent and r e l i a b l e s e r v i c e s were seen as e s s e n t i a l i n developing confidence and t r u s t i n formal supports. "We were fortunate to have a homemaker come that has been coming for two years. She r e a l l y knows him and he knows her . " Many c l i e n t s and c a r e g i v e r s developed cl o s e p o s i t i v e r e l a t i o n s h i p s with homemakers. They were able to provide companionship, p o s i t i v e reinforcement and new s t i m u l a t i o n i n a d d i t i o n to the instrumental tasks that they performed. In summary, t h i s s e c t i o n has o u t l i n e d the v a r i e d b e n e f i t s of formal s e r v i c e s . A s i n g l e i n t e r v e n t i o n may have s e v e r a l s p i n - o f f s for the c a r e g i v e r and the c l i e n t . What t h i s theme begins to r e v e a l i s that what provides r e s p i t e or r e l i e f to the c a r e g i v e r i s not n e c e s s a r i l y determined by the s e r v i c e i t s e l f , but by the f a m i l y member's r e a c t i o n and r e c e p t i v i t y to the i n t e r v e n t i o n . 7. L i m i t a t i o n s of Formal Services This s e c t i o n includes a d i s c u s s i o n of inappropriate or inadequate s e r v i c e s , r e s i s t e n c e to formal involvement and cost 124 1 i m i t a t i o n s . A. I n a p p r o p r i a t e or Inadequate S e r v i c e s : For many of the people interviewed the s e r v i c e s being o f f e r e d were i n some ways p e r c e i v e d as e i t h e r i n a p p r o p r i a t e or inadequate f o r t h e i r s i t u a t i o n . Time r e s t r a i n t s r e l a t e d to hours of homemaker s e r v i c e and a d u l t day care days were f e l t to l i m i t the b e n e f i t s to the c a r e g i v e r of these s e r v i c e s . " F i v e hours makes you race around to be home a g a i n . F i v e hours i s a nuisance." Short a f t e r n o o n r e s p i t e l e f t some c a r e g i v e r s with few options and inadequate time to do necessary tasks o u t s i d e the home. The s e r v i c e was seen by some respondents to be i n f l e x i b l e and unable to respond to i r r e g u l a r i t i e s or i n d i v i d u a l s i t u a t i o n s . A lack of c o n s i s t e n t and dependable homemakers c o n t r i b u t e d to some c a r e g i v e r s ' negative experiences with s e r v i c e s . Family members found i t d i f f i c u l t to develop confidence i n the s e r v i c e when the homemaker was o f t e n changing. "the f i r s t lady t h a t came, I wanted to get to know her and t e l l her a l i t t l e b i t about my mother and o r i e n t her to the house...By the time t h a t happened, then the next week there would be another lady and I would t h i n k , oh god, j u s t when I was ready to take o f f f o r the four hours, I have to go through t h i s r e e d u c a t i o n process a g a i n . " Without the o p p o r t u n i t y to develop t r u s t i n the homemakers, t h i s daughter f e l t t h a t she was unable to b e n e f i t from the s e r v i c e . 125 Other concerns r e l a t e d to the q u a l i t y of care and t r a i n i n g e s p e c i a l l y of the homemakers. "You don't get the same standard of care from each worker. Some have more savvy or have more experience. They don't seem to match the p a t i e n t with the person's e x p e r i e n c e . " C l i e n t needs can vary and i t was seen as important to match the s i t u a t i o n with an a p p r o p r i a t e homemaker. Some f a m i l y members f e l t t h a t homemakers lacked the proper experience and t r a i n i n g t h a t would enable them to provide an a c c e p t a b l e standard of c a r e . In some s i t u a t i o n s the s e r v i c e s i n c r e a s e d the burden faced by the c a r e g i v e r when those s e r v i c e s were p e r c e i v e d as inadequate or i n a p p r o p r i a t e . "What kind of help i s t h a t . I have a few hours o f f then I have to c l e a n up a f t e r him. That doesn't help. Then everyday i t was a d i f f e r e n t person." For t h i s woman, her experiences with homemakers were found to be s t r e s s f u l and the source of more work f o r her r a t h e r than p r o v i d i n g any kind of r e l i e f . In other s i t u a t i o n s , a d u l t day care and s e r v i c e s o u t s i d e the home f a i l e d to provide r e l i e f f o r the c a r e g i v e r . "This was supposed to be of -assistance to me but i t wasn't. I t meant that I had to get up e a r l i e r , get her dressed, make b r e a k f a s t and be a v a i l a b l e f o r her u n t i l the bus came to pick her up at 10:30. Then by that time I was a l r e a d y exhausted.... but the next day she was completely out. She was over t i r e d and I ended up with double duty." 126 T h e a d u l t d a y c a r e d i s r u p t e d t h i s f a m i l y ' s r o u t i n e a n d c r e a t e d m o r e w o r k a n d h a s s l e f o r t h e c a r e g i v e r . One f a m i l y c l e a r l y i d e n t i f i e d t h e l a c k o f c o n s i s t e n t a n d c o m p r e h e n s i v e i n f o r m a t i o n a s a m a j o r i n a d e q u a c y o f t h e p r e s e n t s e r v i c e s y s t e m . " A l l t h e i n f o r m a t i o n y o u n e e d , y o u o f t e n d o n ' t g e t . Some o f i t y o u g e t , b u t y o u h a v e t o s e e k i t o u t . No o n e t a k e s t h e i n i t i a t i v e . " T h i s f a m i l y was f r u s t r a t e d b y t h e e f f o r t t h a t i t t o o k t o g e t t h e i n f o r m a t i o n t h e y n e e d e d t o p l a n a n d h a v e some c o n t r o l o v e r w h a t was h a p p e n i n g t o t h e i r m o t h e r . M a n y o t h e r f a m i l i e s s h o w e d a n e e d f o r i n f o r m a t i o n t h r o u g h t h e i r l a c k o f k n o w l e d g e a b o u t e x i s t i n g s e r v i c e s a n d o p t i o n s a v a i l a b l e t o t h e m . Th e b u r e a u c r a c y o f f o r m a l s e r v i c e s was s e e n a s v e r y i n f l e x i b l e . " T h e y h a v e f i x e d t h e h o u r s o f c a r e a t f i v e h o u r s a d a y . I f y o u w a n t t o c h a n g e t h a t i t i s a b i g h a s s l e . I f y o u h a v e a n e m e r g e n c y a n d t h e h o m e m a k e r s t a y s a n e x t r a h o u r o r t w o y o u g e t i n a b i g k a f u f f l e . I t h a s t o be a u t h o r i z e d i n a d v a n c e . T h a t i s s i l l y . I k e e p t r a c k o f t h e h o u r s . I t s e e m s t o c a u s e c o n f u s i o n i f t h e r e i s a n y c h a n g e o r i r r e g u l a r i t y . " T h i s f a m i l y f e l t t h a t t h e y w e r e n o t b e i n g t r u s t e d a s c a p a b l e t o p l a n o r g a n i z e t h e s e r v i c e n e e d e d f o r t h e i r m o t h e r . B. R e s i s t a n c e t o F o r m a l I n v o l v e m e n t : F o r some c a r e g i v e r s , i n v o l v i n g f o r m a l s e r v i c e s a n d o u t s i d e r s i n a f a m i l y s i t u a t i o n was r e g a r d e d a s u n a c c e p t a b l e . 127 As d i s c u s s e d e a r l i e r , t h i s r e l u c t a n c e i s r e l a t e d to c u l t u r e , values and r o l e e x p e c t a t i o n s but i t a l s o i n f l u e n c e s the b e n e f i t s obtained from formal s e r v i c e s . Strong c u l t u r a l e x p e c t a t i o n s l e f t t h i s c a r e g i v e r with few o p t i o n s . "I can't do anything because my husband does not want. My husband want to keep him here t i l l he d i e s . " The husband viewed a c c e p t i n g s e r v i c e s as an i n s u l t to h i s a b i l i t y to care f o r h i s f a t h e r . The wife s t a t e d her b e l i e f t h a t the s i t u a t i o n w i l l end i n a c r i s i s . Is there any way to a v o i d t h i s ? Many c a r e g i v e r s were r e l u c t a n t to seek s e r v i c e s . "I j u s t don't l i k e a s k i n g f o r more time because I found they have been very good at g i v i n g me these two four hour days." This c a r e g i v e r d i d not see h e r s e l f as having a r i g h t to support. She looked at the s e r v i c e as a g i f t that she must be g r a t e f u l f o r . She continued to see h e r s e l f as having s o l e r e s p o n s i b i l i t y f o r the care of her husband. Many c a r e g i v e r s r e f l e c t e d negative a t t i t u d e s and b e l i e f s about f a c i l i t y c a r e . For some t h i s was viewed as an unacceptable o p t i o n f o r e i t h e r permanent or s h o r t term placement. "I don't l i k e care f a c i l i t i e s . I don't th i n k that they are good pl a c e s f o r anyone human to be. To them i t i s j u s t a job. They have no d e s i r e to see the person get b e t t e r . " S e v e r a l respondents f e l t t h a t an i n s t i t u t i o n would be unable to 128 understand and respond to the v a r i e d and intense needs of t h e i r r e l a t i v e s . I t was f e l t t h a t l i m i t e d resources and s t a f f time coupled with confused or uncommunicative r e s i d e n t s c r e a t e d an atmosphere where the c l i e n t would have " l i m i t e d chance to t a l k and be s t i m u l a t e d " . These c a r e g i v e r s f e l t t h a t an i n s t i t u t i o n c o uld not r e p l a c e the pers o n a l committed care t h a t was provided in a f a m i l y environment. C. Cost l i m i t a t i o n : The f i n a l i ssue r e l a t e d to the l i m i t a t i o n s of formal care addresses the co s t of s e v e r a l r e s p i t e s e r v i c e s . Many e l d e r l y have low and i n f l e x i b l e incomes. Even when h i g h l y s u b s i d i z e d , s e r v i c e s can be out of reach for c l i e n t s l i v i n g at s u b s i s t e n c e l e v e l s . For one immigrant c l i e n t who had no income, h i s f a m i l y was unable to access needed f a c i l i t y placement due to the c o s t . Encouraging c a r e g i v e r s to take a h o l i d a y may be impossible f o r those with low incomes. Some c a r e g i v e r s p r i c e d p r i v a t e homemaker agencies f o r l i v e -in r e s p i t e . T h i s o p t i o n , however was expensive and u n a v a i l a b l e for most f a m i l i e s . They saw LTC s e r v i c e s as t h e i r o n l y p r a c t i c a l o p t i o n . T h i s s e c t i o n has o u t l i n e d some of the l i m i t a t i o n s of the formal care system as seen by the c a r e g i v e r s . Many programs f e l l s h o r t of adequately meeting need due t h e i r lack of f l e x i b i l i t y and responsiveness to i n d i v i d u a l f a m i l y s i t u a t i o n s . The c a r e g i v e r ' s own a t t i t u d e s and b e l i e f s l i m i t e d the b e n e f i t s to be d e r i v e d from many programs. Addressing these gaps r a i s e s 129 s e v e r a l q u e s t i o n s . Do we a d j u s t the s e r v i c e to the c l i e n t p e r c e p t i o n or do we t a r g e t i n t e r v e n t i o n s at changing a t t i t u d e s ? 8. S e r v i c e Needs and Changes C a r e g i v e r s were l e s s a r t i c u l a t e t h a t care managers i n i d e n t i f y i n g unmet needs and ways s e r v i c e should change. The intense involvement t h a t many of these women had i n t h e i r own s i t u a t i o n may have l i m i t e d t h e i r view of how t h i n g s could have been d i f f e r e n t . These f a m i l i e s g e n e r a l l y had had l i t t l e p r i o r involvement with the h e a l t h care system or other l a r g e b u r e a u c r a c i e s . Despite t h i s lack of experience and p o s s i b l e i n t i m i d a t i o n , some suggestions d i d emerge from the i n t e r v i e w s . These suggestions i n c l u d e education and i n f o r m a t i o n , f a m i l y support, f l e x i b i l i t y , expanded f a c i l i t y r e s p i t e , emotional support and assessment of ' f a m i l y ' needs. A. Education and Information: Many of the respondents i d e n t i f i e d the need f o r more education and i n f o r m a t i o n . They had s e v e r a l questions about what kinds of s e r v i c e s were a v a i l a b l e and how to access them. Others expressed f r u s t r a t i o n at the d i f f i c u l t y they had when t r y i n g to seek out i n f o r m a t i o n . One daughter complained about "the lack of a c e n t r a l i n f o r m a t i o n c e n t e r " . People noted the need f o r more i n f o r m a t i o n about care f a c i l i t i e s and other s e r v i c e s i n order to be able to make informed d e c i s i o n s . T r a i n i n g and education on d i r e c t care p r a c t i c e s were seen as h e l p f u l to the c a r e g i v e r i n f a c i l i t a t i n g t h e i r a b i l i t y to provide care at home and reduce the need f o r 13 0 o u t s i d e i n t e r v e n t i o n . " I t i s l i k e when.my husband had cancer. I always f e l t too busy to go and phone and ask f o r help. I d i d n ' t f i n d time u n t i l a f t e r he d i e d when I d i d n ' t need i t so much." This c a r e g i v e r d i s c u s s e d how a c r i s i s and ongoing s t r e s s l i m i t e d her a b i l i t y to take i n and use i n f o r m a t i o n . She went on to d i s c u s s the need f o r c e n t r a l i z e d i n f o r m a t i o n and inc r e a s e d awareness of s e r v i c e s before people reach a c r i s i s p o i n t . B. Faini 1 y suppor t : While most c a r e g i v e r s were r e l u c t a n t to seek help from t h e i r f a m i l i e s , some d i d i d e n t i f y the need to expand t h i s area of support. As one c a r e g i v e r s t a t e d , "the help I need should come from my husband... T h e i r f a t h e r should be looked a f t e r a l i t t l e b i t by everyone." This woman was seeking both emotional and instr u m e n t a l support from her f a m i l y . Without f a m i l y support, i t was seen as a d i f f i c u l t burden f o r one i n d i v i d u a l to c a r r y a l o n e . The c a r e g i v e r made the sugg e s t i o n t h a t f a m i l i e s needed to look at t h e i r own p o t e n t i a l f o r becoming more i n v o l v e d and s u p p o r t i v e i n the c a r e g i v i n g r e l a t i o n s h i p . C. F l e x i b i l i t y : When d i s c u s s i n g s e r v i c e s t h a t were p r e s e n t l y being u t i l i z e d , most i d e n t i f i e d a need f o r the hours and schedule be more f l e x i b l e . "they're not f l e x i b l e . . . I f you need 14 hours i n a day you shouldn't have to f i t i t i n t o a 5 hour s l o t as long as i t 131 doesn't add up to more than 120 hours. I don't know how they determine how much care someone needs." F l e x i b l e hours were seen as necessary f o r the s e r v i c e to be able to respond to changes i n the f a m i l y s i t u a t i o n . An example o f t e n c i t e d was the need for homemaker r e s p i t e hours to be lengthened on o c c a s i o n a l days to permit the c a r e g i v e r to do s p e c i a l tasks or v i s i t f r i e n d s and r e l a t i v e s o u t s i d e the immediate area. R e g u l a t i o n s and lack of input i n t o to what homemaking agency was used f u r t h e r reduced the c o n t r o l f a m i l i e s f e l t that they had over who provided the care to the c l i e n t . " I f i t d i d n ' t come from (a c e r t a i n agency) could i t not be t r a n s f e r r e d so that another person could get so much f o r doing t h i s . " C a r e g i v e r s recommended s h i f t i n g care p r o v i s i o n to a broader range of c a r e p r o v i d e r s and a l l o w i n g f a m i l i e s to have a v o i c e i n the choice of homemaker f o r t h e i r r e l a t i v e . I t was a l s o suggested t h a t f l e x i b l e a d u l t day care hours be introduced to make the s e r v i c e u s e f u l to a broader range of need and reduce the d i s r u p t i o n to the f a m i l y . Respite bed use should a l s o be f l e x i b l e . As one respondent s t a t e d , the h e a l t h department should "judge i t on the b a s i s of how much you need, not j u s t a f l a t 30 days". D. Expanded F a c i l i t y R e s p i t e : F a c i l i t y r e s p i t e was an area i n which many of the c a r e g i v e r s made suggestions f o r the r e o r g a n i z a t i o n and improvement of s e r v i c e d e l i v e r y . Short n o t i c e , emergency, and 132 short term i n s t i t u t i o n a l r e s p i t e were among the recommendations made . Present f a c i l i t y r e s p i t e i s o f t e n booked months i n advance. Many c a r e g i v e r s found t h i s very f r u s t r a t i n g and f e l t t h a t i t was very d i f f i c u l t f o r them to plan so f a r i n the f u t u r e . " I t would be u s e f u l , e s p e c i a l l y i f you d i d n ' t have to make arrangements s i x months ahead. Who i s to know i n the f u t u r e . Sometimes i t i s r i g h t now." To be respo n s i v e to need, the c a r e g i v e r s b e l i e v e d that the s e r v i c e should be a v a i l a b l e on s h o r t e r n o t i c e . C a r e g i v e r s found i t d i f f i c u l t to plan when they would next reach a c r i s i s or need the o p p o r t u n i t y f o r a complete break. Emergency r e s p i t e was another area where i t was f e l t t h a t i n c r e a s e d access to s e r v i c e would be b e n e f i c i a l . C a r e g i v e r s o f t e n f e l t t h a t they "can't a f f o r d to get s i c k " . They wanted the reassurance of knowing a s e r v i c e would be a v a i l a b l e when needed. This reassurance would enable them to plan f o r and f e e l l e s s a n x i e t y about t h e i r f u t u r e . At present, f a c i l i t y r e s p i t e i s a v a i l a b l e i n weekly b l o c k s . Some f a m i l i e s f e l t t h a t s h o r t e r term, frequent r e s p i t e would b e t t e r meet t h e i r needs. "What I thi n k would be good would be i f they could take the person i n t o a home f o r say two days a month f o r example. T h i s would give you a couple days each month to get away or r e s t . " Through p e r i o d i c s h o r t breaks, the c a r e g i v e r s f e l t t h a t they 1 3 3 would be able to enjoy a v a r i e t y of o p p o r t u n i t i e s throughout the year. Some respondents saw a year as too long between r e s p i t e occas ions . As an a l t e r n a t i v e to i n s t i t u t i o n a l r e s p i t e , in-home r e s p i t e where a homemaker comes i n t o the home and stays with the c l i e n t while the c a r e g i v e r goes away was seen by many to be more acc e p t a b l e than using i n s t i t u t i o n a l f a c i l i t i e s . T h i s o p t i o n was pe r c e i v e d to o f f e r l e s s d i s r u p t i o n f o r the c l i e n t and reassurance to the c a r e g i v e r who would know t h a t the c l i e n t was in a comfortable environment. "I wouldn't have to worry about anything happening here and she wouldn't have to be upheaved out of her home and go i n t o a strange place with strange people." Comments of the respondents r e v e a l e d t h e i r b e l i e f t h a t t h i s form of r e s p i t e would be seen as l e s s t h r e a t e n i n g and a l i e n a t i n g to the c l i e n t who would be maintained i n a f a m i l i a r environment with a f a m i l i a r r o u t i n e . One c a r e g i v e r d i s c u s s e d the need f o r more s p e c i a l i z e d separate r e s p i t e f a c i l i t i e s . "What I am l o o k i n g at i s i f only they could have some kind of extended care p l a c e even i f i t was s o r t of s t r i c t l y a r e s p i t e p l a c e . " She f e l t t h a t a s p e c i a l i z e d f a c i l i t y would be b e t t e r equipped to meet the unique needs of her mother. E. Emotional Support: Emotional and mental s t r a i n s have been i d e n t i f i e d as a 134 major s t r e s s e s faced by c a r e g i v e r s . C a r e g i v e r s r e i n f o r c e d the need to i n c l u d e s u p p o r t i v e s e r v i c e s t h a t address these s t r e s s e s . As one daughter s t a t e d , t h i s can be simply "a matter of being here, t a l k i n g to them and keeping them company t h a t helps a l o t " . The c a r e g i v e r was o f t e n s o c i a l l y i s o l a t e d . While much of the emotional support that people needed came from f a m i l y , there were l i m i t s to the involvement and support a v a i l a b l e from w i t h i n t h i s network, one f a m i l y asked, " i f someone i s s t r u g g l i n g with the emotional s i d e of care, i s there someone at the h e a l t h department t h a t they can t a l k t o ? " F. Assessment of 'Family' Needs: For some of the f a m i l i e s i n t h i s study, e s p e c i a l l y where there were m u l t i p l e generations i n v o l v e d , i t was f e l t t h a t assessment and assignment of s e r v i c e needed to be based on more than j u s t the c l i e n t ' s care needs. One c a r e g i v e r had requested help with housework but was denied that because of her age and p h y s i c a l a b i l i t y to complete the task h e r s e l f . She f e l t t h a t the f a c t t h a t she had many other r e s p o n s i b i l i t i e s and demands on her time was not taken i n t o c o n s i d e r a t i o n . The c a r e g i v i n g s i t u a t i o n was being faced by the e n t i r e f a m i l y , not j u s t the c l i e n t . "They s a i d at the center t h a t i f my mother-in-law need help they could send someone here to look a f t e r her. But, f o r my mother-in-law i t doesn't make sense. My f a t h e r - i n - l a w need more ca r e . I f someone come to look a f t e r her, I 135 r a t h e r to have more hours to look a f t e r him." This c a r e g i v e r had been o f f e r e d more help with her mother's care, not with the housework where she f e l t there i s a need. In summary, t h i s s e c t i o n has o u t l i n e d s e v e r a l changes recommended by the c a r e g i v e r s i n t e r v i e w e d . These recommendations ranged from expanding e x i s t i n g s e r v i c e s to c r e a t i n g e n t i r e l y new and s p e c i a l i z e d s e r v i c e s . Most of the c a r e g i v e r s wanted to have more input and c o n t r o l over the frequency, access and form of the s e r v i c e s being o f f e r e d to them. S e r v i c e s suggested would o f f e r the c l i e n t and the c a r e g i v e r the o p p o r t u n i t y to i n c r e a s e t h e i r p h y s i c a l and p s y c h o l o g i c a l a b i l i t y to cope with t h e i r s i t u a t i o n . T h i s must be done by i n c r e a s i n g the resources a v a i l a b l e to them, not by imposing e x t e r n a l s o l u t i o n s . These suggestions do not n e c e s s a r i l y i n v o l v e a gross i n c r e a s e i n cost or r e s o u r c e s , but do i n v o l v e a change i n approach and c o n t r o l . One c a r e g i v e r summarized t h i s b e l i e f by s a y i n g , "I know the government i s spending a l l kinds of money on d i f f e r e n t support s e r v i c e s . I am saying do i t d i r e c t - - d o i t d i r e c t l y with us". T h i s c a r e g i v e r wants to see the consumer d i c t a t i n g the nature and content of s e r v i c e s and how they are d e l i v e r e d . She makes the b a s i c assumption that f a m i l i e s are the best ones to assess need and plan f o r a p p r o p r i a t e c a r e . Given the resources to do t h i s , the outcome f o r both the c l i e n t and c a r e g i v e r would be p o s i t i v e . There are many b a r r i e r s to accomplishing t h i s 136 kind s h i f t i n c o n t r o l , the most s i g n i f i c a n t one being the b i a s our s o c i e t y and medical model show towards the e l d e r l y and t h e i r needs. "Most medical p r o f e s s i o n a l s don't t h i n k o l d people are as important. They see d i s a b i l i t y for a young person as a great tragedy. For the o l d person, they have l i v e d t h e i r l i f e - - t h e y don't need.to have a b e t t e r l i f e . " T h i s person a r t i c u l a t e d the pessimism f e l t by many others towards the l i k e l i h o o d of s i g n i f i c a n t change. The low p r i o r i t y given to the aged and c h r o n i c h e a l t h care needs impacts on the funding and a t t e n t i o n support s e r v i c e s r e c e i v e . A t r a d i t i o n a l medical model continues to compartmentalize need and g i v e s c l i e n t s and f a m i l i e s l i t t l e c o n t r o l over the content and d e l i v e r y of s e r v i c e s . Summary Th i s chapter has o u t l i n e d the themes and content of the f i n d i n g s of t h i s r e s e a r c h . The data are r i c h i n d e t a i l and scope. The c a t e g o r i e s are not mutually e x c l u s i v e but r e l a t e to and impact on each other. These f i n d i n g s , l i k e the i n d i v i d u a l s i t u a t i o n s they r e f l e c t , cannot be compartmentalized. The data gathered from case managers and c a r e g i v e r s r e v e a l e d many s i m i l a r themes, but the content and emphasis d i d r e f l e c t the d i f f e r e n t p e r s p e c t i v e s and p o s i t i o n s of the two groups. The next chapter presents a more d e t a i l e d d i s c u s s i o n of the i m p l i c a t i o n s of t h i s data along with a p r e s e n t a t i o n of the core c a t e g o r i e s that connect much of the data that have been presented. The t h e o r e t i c a l i m p l i c a t i o n s f o r p r a c t i c e and program development w i l l a l s o be addressed. 138 CHAPTER 5 INTERPRETATION OF FINDINGS I n t r o d u c t i o n T h i s chapter focuses on the i n t e r p r e t a t i o n of the datagathered in t h i s r e s e a r c h p r o j e c t . T h i s a n a l y s i s must be c o n s i d e r e d i n the context of the o r i g i n a l o b j e c t i v e s of t h i s r e s e a r c h . The primary o b j e c t i v e s i d e n t i f i e d were: A) To c o n c e p t u a l i z e 'need' for r e s p i t e from the p e r s p e c t i v e s of case managers and c a r e g i v e r s , and; B) To i d e n t i f y program o b j e c t i v e s and s e r v i c e recommendations that address the need i d e n t i f i e d by the two respondent groups. The d i s c u s s i o n of the f i n d i n g s has been d i v i d e d i n t o two main s e c t i o n s . The f i r s t s e c t i o n addresses needs i d e n t i f i e d from the data. The second s e c t i o n d e a l s with recommended o b j e c t i v e s and i n t e r v e n t i o n s i n the area of r e s p i t e c a r e . A f i n a l s e c t i o n w i l l explore the b a r r i e r s w i t h i n the formal and i n f o r m a l system that impede the development of e f f e c t i v e and complementary care networks. Two c e n t r a l o r g a n i z i n g concepts are used as the as core c a t e g o r i e s of the d ata. These core c a t e g o r i e s u n i f y the numerous themes of the presented data and r e l a t e to both need and s e r v i c e d e l i v e r y o b j e c t i v e s of the study. These core c a t e g o r i e s are d i s c u s s e d under each of the f i r s t two main s e c t i o n s of t h i s chapter. The f i r s t of these two concepts w i l l be r e f e r r e d to as system s t i m u l a t i o n . Here a systems model of i n t e r p r e t i n g need and p l a n n i n g i n t e r v e n t i o n i s used to understand how c a r e g i v e r s experience t h e i r s i t u a t i o n and how s e r v i c e s can support the c a r e g i v i n g r e l a t i o n s h i p . The second core category to emerge from the data r e l a t e s to loc u s of c o n t r o l i n the c a r e g i v i n g r e l a t i o n s h i p . D i s c u s s i o n of t h i s concept touches on understanding who c o n t r o l s the system of supports and s e r v i c e s a v a i l a b l e to f a m i l y c a r e g i v e r s and how a complementary r e l a t i o n s h i p between formal and i n f o r m a l sources of care may be developed. Most of the i n t e r p r e t a t i o n and d i s c u s s i o n of concepts i n t h i s chapter i s done at the l e v e l of t h e i r t h e o r e t i c a l and p h i l o s o p h i c a l underpinnings. While some s p e c i f i c program recommendations w i l l be presented i n the c o n c l u d i n g chapter of t h i s t h e s i s , i t i s important t h a t these i d e o l o g i c a l and value iss u e s be addressed and understood f i r s t . C o n c e p t u a l i z i n g Need The f i n d i n g s of t h i s r e s e a r c h r e v e a l a broad spectrum of needs r e l a t e d to r e s p i t e c a r e . These needs are now organized and d i s c u s s e d as they r e l a t e to the need f o r s t i m u l a t i o n i n the system and the need f o r the c a r e g i v e r and f a m i l y system to develop and maintain c o n t r o l i n t h e i r s i t u a t i o n . 1. System S t i m u l a t i o n : Many of the needs i d e n t i f i e d by both case managers and 140 c a r e g i v e r s r e l a t e t o t h e l a c k o f r e s o u r c e s a v a i l a b l e f o r m e e t i n g t h e r e s p o n s i b i l i t i e s a n d d u t i e s i n v o l v e d i n c a r i n g f o r a n i n f i r m e l d e r l y r e l a t i v e . B o t h g r o u p s o f r e s p o n d e n t s d i s c u s s t h e n e e d t o i n c r e a s e r e s o u r c e s a v a i l a b l e w i t h i n a n d o u t s i d e t h e f a m i l y s y s t e m . A. C a s e M a n a g e r s ' P e r s p e c t i v e s C a s e m a n a g e r s f e e l t h a t many c a r e g i v e r s h a v e l i m i t e d p e r s o n a l a n d f a m i l y r e s o u r c e s . T h e i s o l a t i o n o f t h e c a r e g i v e r s , t h e i r l a c k o f e d u c a t i o n a n d a w a r e n e s s , a n d a b s e n c e o f r o l e m o d e l s f o r t h e i r s i t u a t i o n c r e a t e a g a p b e t w e e n t h e n e e d s b e i n g f a c e d b y t h e c a r e g i v e r s a n d t h e i r a b i l i t y t o c o p e w i t h t h e s e d e m a n d s . T h e c a r e g i v e r s a r e u n a b l e t o p l a n o r e x e r c i s e o p t i o n s a s a r e s u l t o f b e i n g o v e r w h e l m e d b y t h e i r s i t u a t i o n . O f t e n p e r s o n a l r e s o u r c e s a n d c o p i n g s t r a t e g i e s a r e c o n s t r a i n e d b y c u l t u r e , s o c i a l i z a t i o n a n d a f e a r o f b e c o m i n g i n v o l v e d i n u n f a m i l i a r s i t u a t i o n s . T h e y may f a c e c o n f l i c t s b e t w e e n t h e n e e d s o f t h e e l d e r l y r e l a t i v e a n d t h e n e e d t o c a r e f o r t h e m s e l v e s o r a t t e n d t o o t h e r f a m i l y r e s p o n s i b i l i t i e s . A l l o f t h e s e n e e d s a n d r e s o u r c e l i m i t a t i o n s p o i n t t o a n e e d t o i n c r e a s e t h e r e s o u r c e s a v a i l a b l e t o t h e c a r e g i v e r . I t h a s b e e n d e m o n s t r a t e d t h a t i t i s u s u a l l y o n e i n d i v i d u a l who a s s u m e s t h e b u l k o f c a r e g i v i n g r e s p o n s i b i l i t y . D e f i n i n g n e e d s h o u l d f o c u s o n t h i s i n d i v i d u a l a s a c e n t r a l p a r t o f t h e s y s t e m , b u t t h e e n t i r e c a r e g i v i n g r e l a t i o n s h i p a n d c o n t e x t m u s t a l s o b e c o n s i d e r e d . T h e a v a i l a b i l i t y o f o t h e r i n f o r m a l s u p p o r t s , t h e 141 h i s t o r y a n d s t a t u s o f t h e r e l a t i o n s h i p w i t h t h e c a r e g i v e r a n d t h e p e r s o n a l a n d c u l t u r a l v a l u e s h e l d b y t h e f a m i l y m e m b e r s m u s t be c o n s i d e r e d w h e n a s s e s s i n g w h a t k i n d o f s u p p o r t p e o p l e n e e d a n d w h a t w i l l b e p e r c e i v e d a s a c c e p t a b l e a n d b e n e f i c i a l . E d u c a t i o n , c o u n s e l l i n g , i n c r e a s e d p e r s o n a l t i m e , a n d f r e e d o m f o r t h e c a r e g i v e r a r e some o f t h e a r e a s w h e r e n e e d s w e r e i d e n t i f i e d . T h e s e s u g g e s t i o n s a r e b a s e d o n a n a s s e s s m e n t o f w h a t t h e c a r e g i v e r s n e e d t o m a i n t a i n t h e i r r o l e i n t h e s y s t e m . The c a s e m a n a g e r s v a l i d a t e t h e c a r e g i v e r s ' r i g h t t o r e c e i v e s u p p o r t f o r t h e i r own n e e d s . I n t h e c a s e o f r e s p i t e , n e e d i s b e i n g d e f i n e d o n t h e b a s i s o f t h e c a r e g i v e r s ' n e e d s w i t h i n a s y s t e m o f f a m i l y a n d f o r m a l s u p p o r t s . T h e i d e n t i f i e d c l i e n t i s s e e n i n t h e c o n t e x t o f a c a r e g i v i n g s y s t e m . Th e c e n t e r o f t h i s s y s t e m i s s h a r e d w i t h t h e p r i m a r y c a r e g i v e r . T h e s y s t e m e x p e r i e n c e s many l i m i t a t i o n s a n d g a p s b e t w e e n r e s o u r c e s a n d d e m a n d s . The n e e d i s f o r t h e f o r m a l s y s t e m t o i n t e r v e n e i n a w a y t h a t i n c r e a s e s t h e r e s o u r c e s a n d e n e r g y a v a i l a b l e i n t h e c a r e g i v i n g s y s t e m . W h i l e r e s p i t e c a r e s e r v i c e s a r e u s u a l l y t a r g e t e d d i r e c t l y a t t h e c a r e g i v e r , o t h e r i n t e r v e n t i o n s may p r o v i d e e q u a l b e n e f i t . A s e r v i c e t h a t i n t e r v e n e s w i t h t h e c l i e n t a n d p r o v i d e s t h e c a r e g i v e r w i t h a new p e r s p e c t i v e a n d c o n t a c t may be a s b e n e f i c i a l a s a s e r v i c e t h a t p r o v i d e s m o r e d i r e c t r e l i e f t o t h e c a r e g i v e r . C a s e m a n a g e r s s e e f o r m a l s u p p o r t s a s a p a r t o f t h e c a r e g i v i n g s y s t e m . T h e s e s u p p o r t s a l s o f a c e l i m i t a t i o n s i n t h e i r a b i l i t y t o m e e t n e e d s e s p e c i a l l y w h e n t h e s u p p o r t s a r e 142 u n a v a i l a b l e , unknown, or unacceptable to the f a m i l y . To be able to work e f f e c t i v e l y as part of the c a r e g i v i n g system, formal supports need to understand the primary r e l a t i o n s h i p between the c l i e n t and c a r e g i v e r and work to strengthen t h i s r e l a t i o n s h i p when i t i s seen as p o s i t i v e f o r both p a r t i e s . Formal supports are not seen as something d i v o r c e d from the primary c a r e g i v e r . S e r v i c e s must aim to become part of the c a r e g i v i n g system by p r o v i d i n g input and s t i m u l a t i o n w i t h i n the c a r e g i v i n g r e l a t i o n s h i p . B. C a regiver P e r s p e c t i v e The c a r e g i v e r s i d e n t i f y many of the same needs as d i d the case managers. They d e s c r i b e the m u l t i p l e s t r e s s e s t h a t they face and the l i m i t s they experience to t h e i r own a b i l i t y to cope. These c a r e g i v e r s admit to being i s o l a t e d and l a c k i n g i n f o r m a t i o n or understanding of how to a d j u s t to t h e i r s i t u a t i o n or d e a l with the necessary o u t s i d e resources and s e r v i c e s . They are u s u a l l y the s o l e source of support and have high e x p e c t a t i o n s of themselves to be able to meet most needs w i t h i n t h i s c o n f i n e d system. T h e i r long h i s t o r y and intense involvement in the c a r e g i v i n g r e l a t i o n s h i p c o n t r i b u t e s to t h e i r i s o l a t i o n and r e l u c t a n c e to i n v o l v e or seek out o u t s i d e r e s o u r c e s . For these c a r e g i v e r s , the c a r e g i v i n g system i s a very s m a l l and c l o s e d network. Formal supports are e i t h e r unknown or seen as unacceptable. Family support i s o f t e n u n a v a i l a b l e . L i m i t e d i n f o r m a t i o n or s t i m u l a t i o n comes i n t o the f a m i l y system. Depression, hopelessness and other negative emotional r e a c t i o n s occur along with p h y s i c a l exhaustion. These c a r e g i v e r s are a s k i n g f o r help through i n c r e a s e d i n f o r m a t i o n , awareness of options and some freedom or f l e x i b i l i t y i n t h e i r l i v e s . T h e i r need i s not d e f i n e d i n terms of s p e c i f i c resource d e f i c i t s or i n t e r v e n t i o n s , but focuses on the need to make a connection and i n c r e a s e t h e i r a b i l i t y to plan and cope with the s i t u a t i o n . They do not want to give up tasks or r e s p o n s i b i l i t i e s , but want to connect with a s e r v i c e i n a way that w i l l s trengthen t h e i r m o t i v a t i o n and a b i l i t y to continue i n the c a r e g i v i n g r o l e . For the c a r e g i v e r s , the c a r e g i v i n g system c o n s i s t s p r i m a r i l y of the c l i e n t and themselves. Formal s e r v i c e s are seen to be o u t s i d e and separate from t h i s system. They want resources such as the LTC s e r v i c e s a v a i l a b l e f o r them to tap i n t o and b r i n g new energy and r e l i e f i n t o t h e i r system. Access to such s e r v i c e s w i l l enable the c a r e g i v e r s to expand t h e i r o p t ions and r e v i t a l i z e the c a r e g i v i n g r e l a t i o n s h i p , both p h y s i c a l l y and e m o t i o n a l l y . The issue of how connected formal s e r v i c e s are to the c a r e g i v i n g system i s the major d i f f e r e n c e between how case managers and c a r e g i v e r s view the need fo r system i n t e r v e n t i o n . The case managers, as part of the formal system, are l i k e l y to see i t s r o l e as more c e n t r a l than f a m i l i e s who are a l r e a d y p r o v i d i n g the bulk of c a r e . 144 Matrix I NEEDS RELATED TO Case Manager Viewpoint - l i m i t e d p e r s o n a l and f a m i l y resources to meet high degree of s t r e s s and burden -gap between demand and resources - i s o l a t i o n and l i m i t e d p e r s p e c t i v e of c a r e g i v e r -lack of educat i o n , s o c i a l i z -a t i o n and r o l e models -value gaps and c o n f l i c t - f e a r of the unknown -negative emotional r e a c t i o n s and mental s t r e s s of c a r e g i v i n g - c a r e g i v e r ' s need f o r freedom - c a r e g i v e r ' s r i g h t to support -need f o r LTC to supplement f a m i l y involvement M STIMULATION Caregiver Viewpoint - m u l t i p l e s t r e s s e s r e l a t e d to c o n f u s i o n , medical concerns, mental s t r e s s and u n p r e d i c t -a b i l i t y -demands outweighing resources - s o c i a l i s o l a t i o n of the c a r e g i v e r - l a c k of i n f o r m a t i o n - s o l e r e s p o n s i b i l i t y for care -high e x p e c t a t i o n s of s e l f -long h i s t o r y of burden -constant r e s p o n s i b i l i t y and lack of freedom -de p r e s s i o n and hopelessness - s t r e s s and c o n f l i c t w i t h i n the f a m i l y - l i m i t e d f a m i l y support and a v a i l a b i l i t y 145 2. Need f o r C o n t r o l i n the C a r e g i v i n g R e l a t i o n s h i p ; The second major and r e l a t e d theme t h a t emerges from the d i s c u s s i o n of need f o r r e s p i t e i s a need f o r c o n t r o l . Some of these needs appear s i m i l a r t o those d i s c u s s e d i n the f i r s t s e c t i o n , but t h e i r s ource and i n t e r p r e t a t i o n t a k e a d i f f e r e n t p e r s p e c t i v e . Case managers and c a r e g i v e r s i d e n t i f y many s i m i l a r i s s u e s i n t h i s a r e a a l o n g w i t h some d i f f e r e n c e s . T h e i r p e r c e p t i o n s and an i n t e r p r e t a t i o n of the i s s u e s t h a t t h e y r a i s e w i l l now be p r e s e n t e d . A. Case Manager P e r s p e c t i v e Case managers see f a m i l y c a r e g i v e r s as h a v i n g l i m i t e d c o n t r o l over t h e i r s i t u a t i o n due t o t h e i r l i m i t e d p e r s o n a l r e s o u r c e s and a l l consuming demands of c a r e g i v i n g . T h i s s i t u a t i o n i s e x a c e r b a t e d by s h o r t a g e s and r e s t r i c t i o n s a s s o c i a t e d w i t h f o r m a l c a r e s e r v i c e s . Many of the s h o r t c o m i n g s i d e n t i f i e d expose a need t o expand f o r m a l r e s o u r c e s , improve s e r v i c e a c c e s s and i n c r e a s e s e r v i c e f l e x i b i l i t y . These s e r v i c e s s h o u l d be t a r g e t e d a t the f a m i l y and not be p r o v i d e d on the b a s i s of one i n d i v i d u a l ' s c a r e l e v e l . The c a r e g i v e r ' s s i t u a t i o n needs t o be r e c o g n i z e d and v a l i d a t e d as an e s s e n t i a l and s t r e s s f u l p o s i t i o n i n the f a m i l y . What case managers are i d e n t i f y i n g t h rough t h e s e s u g g e s t i o n s i s the need t o i n v o l v e the c a r e g i v e r as a c e n t r a l a c t o r i n the assessment and d e l i v e r y of s e r v i c e s . They d i s c u s s the need t o adopt a team approach t o c a r e t h a t i n v o l v e s the c o l l a b o r a t i v e e f f o r t s of both f a m i l y and f o r m a l s e r v i c e s . 146 Continued f a m i l y care i s seen as b e n e f i c i a l to the c l i e n t , c a r e g i v e r and the formal system. They f e e l t h a t i t i s necessary to leave the f a m i l y with c o n t r o l as the primary source of care but t h a t an a t t i t u d e of shared r e s p o n s i b i l i t y should be adopted by both formal and f a m i l y networks. Case managers d e s c r i b e the need to provide support w i t h i n the c a r e g i v i n g r e l a t i o n s h i p r a t h e r than imposing e x t e r n a l s o l u t i o n s or t a k i n g away r o l e s from the f a m i l y and c a r e g i v e r . By s t r e n g t h e n i n g the pers o n a l resources and a b i l i t y of the c a r e g i v e r to c o n t r o l and organize h i s or her own s i t u a t i o n i t i s f e l t t h a t the outcome w i l l be p o s i t i v e f o r both the c l i e n t and f a m i l y . Many of the negative emotional responses such as de p r e s s i o n , a n x i e t y and hopelessness stem from the c a r e g i v e r ' s experience of l a c k i n g c o n t r o l . The case managers d e s c r i b e c a r e g i v e r s who have l i m i t e d o p p o r t u n i t i e s to develop s k i l l s or knowledge of how to de a l with c a r e g i v i n g r e s p o n s i b i l i t i e s and the complicated formal bureaucracy that claims to o f f e r a s s i s t a n c e . These c a r e g i v e r s are l e f t f e e l i n g t h a t t h e i r l i v e s are c o n t r o l l e d by needs of the c l i e n t s and the schedule of a v a i l a b l e e x t e r n a l supports. T h i s d i s c u s s i o n p o i n t s to the need f o r f a m i l y c a r e g i v e r s to inc r e a s e t h e i r i n f l u e n c e and c o n t r o l i n order to maximize the care provided to the c l i e n t and improve the c a r e g i v e r s ' own mental and emotional h e a l t h . Through increased p e r s o n a l resources and gr e a t e r input i n t o the involvement of e x t e r n a l s e r v i c e s i n t h e i r s i t u a t i o n , c a r e g i v e r s w i l l be b e t t e r equipped t o d e v e l o p a n d m a i n t a i n a c o m p l e m e n t a r y r e l a t i o n s h i p b e t w e e n f o r m a l a n d i n f o r m a l s o u r c e s o f c a r e . B. C a r e g i v e r P e r s p e c t i v e C a r e g i v e r s e c h o t h e n e e d f o r i n c r e a s e d p e r s o n a l a n d f o r m a l r e s o u r c e s t o e n a b l e t h e m t o d e a l e f f e c t i v e l y w i t h t h e i r s i t u a t i o n . T h e y s e e a n e e d f o r m o r e i n f o r m a t i o n a n d e d u c a t i o n a b o u t r e s o u r c e s . E x i s t i n g s e r v i c e s n e e d t o b e c o m e m o r e f l e x i b l a n d a c c e s s i b l e . M a n y o f t h e s e r e s p o n d e n t s p e r c e i v e t h e m s e l v e s w i t h f e w c h o i c e s . T h e i r f e e l i n g s o f o b l i g a t i o n , d u t y a n d c u l t u r a l v a l u e c o n t r i b u t e t o t h e i r s e n s e o f b e i n g t r a p p e d i n t h e i r s i t u a t i o n . T h e s e c a r e g i v e r s o f t e n f e e l u n e a s y a n d l a c k c o n f i d e n c e i n t h e a b i l i t y o f f o r m a l s e r v i c e s t o p r o v i d e q u a l i t y c a r e f o r t h e i r r e l a t i v e . T h e i r own h i g h p e r s o n a l e x p e c t a t i o n s a n d a s s u m p t i o n o f t o t a l r e s p o n s i b i l i t y f o r t h e c a r e a n d c o m f o r t o f t h e c l i e n t c o n t r i b u t e t o a r e s i s t a n c e t o many f o r m a l i n t e r v e n t i o n s . T h e j u d g e m e n t o f many s e r v i c e s a s u n a c c e p t a b l e f u r t h e r l i m i t s t h e c h o i c e s a v a i l a b l e t o t h e c a r e g i v e r . T h e c o m m e n t s o f t h e c a r e g i v e r s i n t h i s s t u d y r e f l e c t t h e i r d e s i r e f o r c o n s i s t e n t a n d r e l i a b l e s e r v i c e s . T h e y n e e d t o h a v e i n c r e a s e d i n p u t a n d i n f l u e n c e i n t h e c o n t e n t a n d d e l i v e r y o f s u p p o r t s e r v i c e s i n o r d e r t o f e e l c o m f o r t a b l e a n d a c c e p t i n g o f t h e s e i n t e r v e n t i o n s . W i t h o u t a d d r e s s i n g t h e r e s i s t a n c e t h e s e c a r e g i v e r s f e e l t o e x i s t i n g s e r v i c e s , f o r m a l s u p p o r t s w i l l c o n t i n u e t o p r o v i d e l i m i t e d c h o i c e s t o f a m i l i e s . T h e r e i s a n e e d t o v a l i d a t e t h e 148 p h y s i c a l and emotional s t r e s s of c a r e g i v i n g . The values and pe r c e p t i o n s of the c a r e g i v e r must become part of the assessment of need. The needs i d e n t i f i e d by f a m i l y members o f t e n r e l a t e to t h e i r sense of hopelessness and lack of c o n t r o l over t h e i r s i t u a t i o n . These people need more than i n s t r u m e n t a l s e r v i c e s . They need supports that increase t h e i r a b i l i t y to cope with t h e i r s i t u a t i o n without t h r e a t e n i n g to take away t h e i r c o n t r o l of the c a r e g i v i n g r e l a t i o n s h i p . They need to f e e l t h a t t h e i r experiences are v a l i d and t h e i r responses l e g i t i m a t e . They must be given the o p p o r t u n i t y to d e f i n e t h e i r own needs and how those needs are best met. T h i s i n v o l v e s i n c r e a s i n g t h e i r c o n f i d e n c e , s k i l l l e v e l and knowledge. In summary, t h i s d i s c u s s i o n has focused on understanding need from two p e r s p e c t i v e s : the need to provide s t i m u l a t i o n to the c a r e g i v i n g system; and the need f o r the c a r e g i v i n g system and the c a r e g i v e r s in p a r t i c u l a r , to develop c o n t r o l over t h e i r c ircumstances. From a systems model approach, r e s p i t e care s e r v i c e s are needed i n order to provide new energy i n t o the c a r e g i v i n g system. I n t e r v e n t i o n t h a t provides p h y s i c a l or emotional r e l i e f can a c t to r e v i t a l i z e the system and strengthen the c a r e g i v e r ' s a b i l i t y and m o t i v a t i o n to cope with the c a r e g i v i n g demands that he or she f a c e s . The need f o r i n t e r v e n t i o n must be assessed on the b a s i s of an understanding of the c a r e g i v i n g system and i t s st r e n g t h s and weaknesses. The impact of a p a r t i c u l a r 149 i n t e r v e n t i o n must be considered i n terms of i t s i n f l u e n c e on connected p a r t s of the f a m i l y system. Resp i t e i s d e f i n e d by the b e n e f i t p e r c e i v e d by the c a r e g i v e r , and not by the type or p o i n t of i n t e r v e n t i o n . R e s p i t e care s e r v i c e s are designed to provide r e l i e f and support to the c a r e g i v e r . From the p e r s p e c t i v e that c o n s i d e r s the locus of c o n t r o l , these s e r v i c e s need to i n v o l v e c o n s u l t a t i o n and c o l l a b o r a t i o n with the c a r e g i v e r . The need f o r r e s p i t e should be d e f i n e d i n c o n s i d e r a t i o n of the c a r e g i v e r ' s s t r e n g t h s , l i m i t a t i o n s and r e c e p t i v e n e s s to i n t e r v e n t i o n . If r e s p i t e i s to provide r e l i e f and support to the c a r e g i v e r , h i s or her per s o n a l r e a c t i o n to the s e r v i c e must be the focus of assessment. Without e x p e r i e n c i n g some c o n t r o l over the d e f i n i t i o n and d e l i v e r y of supports, the c a r e g i v e r w i l l d e r i v e r e s t r i c t e d b e n e f i t s from any s e r v i c e . 150 Matrix II NEEDS RELATED TO LOCUS OF CONTROL Case Manager P e r s p e c t i v e Caregiver P e r s p e c t i v e -shortage of pe r s o n a l and formal resources -1 i i'u i t e d a c c e s s t o r e s o u r c e s -time and cost r e s t r a i n t s -need to expand s e r v i c e s and in c r e a s e f l e x i b i l i t y -need to focus on f a m i l y , not i n d i v i d u a l needs -need to accept shared respon-s i b i l i t y -need to adopt team approach to care -need to leave f a m i l y with primary r o l e as c a r e g i v e r -need to recognize and v a l i -date r o l e or c a r e g i v e r -need to provide support w i t h i n the f a m i l y -need to adopt s o f t s e l l approach to s e r v i c e -inadequate resources to meet care demands -need to improve access and in c r e a s e f l e x i b i l i t y -need to increase c h o i c e s a v a i l a b l e to the c a r e g i v e r -need to address c a r e g i v e r r e s i s t a n c e to s e r v i c e s -need to i n c r e a s e comfort and t r u s t i n s e r v i c e s -need to improve q u a l i t y and c o n s i s t e n c y of supports -need to address high personal e x p e c t a t i o n s -need to i n c r e a s e c a r e g i v e r ' s imput i n s e r v i c e d e l i v e r y -need to i n c r e a s e awareness of formal s e r v i c e s -need to v a l i d a t e p h y s i c a l and emotional s t r e s s of c a r e g i v i n g 151 P l a n n i n g I n t e r v e n t i o n s I n t h i s c h a p t e r , t h e t o p i c s o f n e e d a n d i n t e r v e n t i o n h a v e b e e n a r t i f i c i a l l y s e p a r a t e d . I n r e a l i t y t h e s e t w o a r e a s a r e c l o s e l y c o n n e c t e d a n d o v e r l a p . I n c o n s i d e r a t i o n o f t h e n e e d s i d e n t i f i e d i n t h e f i r s t s e c t i o n o f t h i s c h a p t e r , t h i s s e c t i o n e x p l o r e s t h e i m p l i c a t i o n s f o r i n t e r v e n t i o n . L. I n t e r v e n t i o n B a s e d o n S y s t e m S t i m u l a t i o n : M a n y o f t h e r e c o m m e n d a t i o n s f o r c h a n g e o r p r o g r a m d e v e l o p m e n t t h a t a r i s e o u t t h e i n t e r v i e w s i n t h i s r e s e a r c h p r o j e c t a r e d i r e c t r e s p o n s e s t o t h e n e e d t o f i l l g a p s i n t h e e x i s t i n g s y s t e m o f f o r m a l a n d i n f o r m a l s u p p o r t s . A d d r e s s i n g t h e s e n e e d s t h r o u g h s u p p o r t p r o g r a m s f o r c a r e g i v e r s i n v o l v e s m o r e t h a n a d d i n g r e s o u r c e s . T h e f o l l o w i n g i s a d i s c u s s i o n a n d i n t e r p r e t a t i o n o f t h e r e c o m m e n d a t i o n s made b y b o t h c a s e m a n a g e r s a n d c a r e g i v e r s . A. C a s e M a n a g e r P e r s p e c t i v e T h e s t r e n g t h s o f e x i s t i n g s e r v i c e s a n d t h e n e e d f o r f u r t h e r d e v e l o p m e n t f o c u s o n e x p a n d i n g t h e r e s o u r c e b a s e o f t h e f a m i l y . T h i s i n c l u d e s p r o v i d i n g e d u c a t i o n t o m a x i m i z e t h e c a r e g i v e r ' s own a b i l i t i e s a n d s k i l l s a s w e l l a s d e v e l o p i n g k n o w l e d g e a n d i n f o r m a t i o n a b o u t e x i s t i n g s e r v i c e s a n d o p t i o n s t o f u r t h e r e n h a n c e t h e c a r e g i v e r ' s a c c e s s t o r e s o u r c e s . C o u n s e l l i n g a n d e m o t i o n a l s u p p o r t n e e d t o be i n c o r p o r a t e d i n t o t h e f o r m a l h e a l t h c a r e s y s t e m . To a c c o m p l i s h t h i s , c a s e m a n a g e r s m u s t be g i v e n t h e t i m e a n d f l e x i b i l i t y t o i d e n t i f y h i g h r i s k s i t u a t i o n s a n d p r o v i d e m e n t a l h e a l t h s u p p o r t s a s w e l l a s i n s t r u m e n t a l s e r v i c e s . 152 The goal of i n c r e a s i n g the energy and commitment of the i n f o r m a l support network i s accomplished through p r o v i d i n g s e r v i c e s that are i n c o r p o r a t e d i n t o the system, not imposed from o u t s i d e the c a r e g i v i n g system. S e r v i c e s such as education and c o u n s e l l i n g give the c a r e g i v e r the o p p o r t u n i t y to develop h i s or her own p e r s o n a l s k i l l s and coping a b i l i t i e s . R e s p i t e s e r v i c e s that provide c a r e g i v e r s with p e r s o n a l time and f l e x i b i l i t y In t h e i r l i v e s give them the chance to make connections outside the f a m i l y . Whether r e s p i t e allows the c a r e g i v e r to j o i n an o r g a n i z a t i o n , escape from constant the demands, or adds a new person or a c t i v i t y to her l i f e , the boundary of that system i s expanded. The c a r e g i v e r ' s r o l e i s expanded, not c o n s t r a i n e d , by the s e r v i c e s that are o f f e r e d . A h o l i s t i c d e f i n i t i o n of h e a l t h and w e l l - b e i n g that i n c o r p o r a t e s p h y s i c a l , emotional, p s y c h o l o g i c a l and s o c i a l • adjustment i s a necessary component of t h i s kind of i n t e r v e n t i o n . The needs of the c a r e g i v e r cannot be separated from the c l i e n t and the c a r e g i v i n g system. Mental h e a l t h needs are c l o s e l y connected to p h y s i c a l h e a l t h and the need f o r i n s t r u m e n t a l support. The interconnectedness of the c a r e g i v i n g system, both w i t h i n the c a r e g i v i n g r e l a t i o n s h i p and between i n d i v i d u a l s i n the system must be recognized i n the development and d e l i v e r y of r e s p i t e s e r v i c e s . S e r v i c e s must be community based, responsive to the i n t e r r e l a t e d p a r t s of the c a r e g i v i n g r e l a t i o n s h i p and f l e x i b l e in order to be able to provide s e r v i c e t h a t i s t a r g e t e d at the 153 p a r t of the c a r e g i v i n g system where the i n t e r v e n t i o n w i l l be the most e f f e c t i v e . For some c a r e g i v e r s , homemaker r e s p i t e i s able to provide s i g n i f i c a n t support due to the t r u s t the c a r e g i v e r develops i n the s e r v i c e and the s t i m u l a t i o n and new energy that i s presented to the i s o l a t e d c l i e n t . While a d u l t day care may be very s u p p o r t i v e f o r some c l i e n t s , f o r others the s e r v i c e i s pe r c e i v e d to be a l i e n a t i n g and s t r e s s producing. The key to p r o v i d i n g a s e r v i c e that i s able to strengthen the core c a r e g i v i n g r e l a t i o n s h i p l i e s i n dev e l o p i n g f l e x i b l e supports that are s e n s i t i v e to the p e r c e p t i o n s , s t r e n g t h s and l i m i t a t i o n s of the c a r e g i v i n g system. B. Caregiver P e r s p e c t i v e In order to i n c r e a s e the resources and coping a b i l i t y of the f a m i l y c a r e g i v i n g system, c a r e g i v e r s recommend that s e r v i c e s be provided that i n c r e a s e the pers o n a l time and freedom a v a i l a b l e to them. Education and i n f o r m a t i o n are other areas where they f e e l t h a t programs should be developed. These recommendations focused l a r g e l y on expanding e x i s t i n g s e r v i c e s . I t i s o f t e n e a s i e r f o r people to ask f o r "more of the same 1 than to i d e n t i f y new id e a s . T h i s tendency may crea t e a b i a s i n the recommendations presented by both groups of respondents. For many of these c a r e g i v e r s , i n s t r u m e n t a l s e r v i c e s are the focus of many recommendations. This i s an area where the f a m i l y members seem to f e e l more comfortable a d m i t t i n g to t h e i r l i m i t a t i o n s . Emotional and mental h e a l t h needs are d i f f i c u l t f o r some to i d e n t i f y and a r t i c u l a t e . P h y s i c a l l i m i t a t i o n s are p e r c e i v e d t o be m o r e s o c i a l l y a c c e p t a b l e t h a n p s y c h o l o g i c a l w e a k n e s s e s . T h i s b i a s i s a n i m p o r t a n t c o n s i d e r a t i o n i n t h e e a r l y s t a g e s o f i n v o l v e m e n t w i t h f o r m a l s e r v i c e s . C a r e g i v e r s may n e e d t o d e v e l o p c o m f o r t a n d t r u s t w i t h s e r v i c e s g e a r e d a t i n s t r u m e n t a l t a s k s b e f o r e t h e y w i l l a c c e p t i n t r a p e r s o n a l s u p p o r t s . B o t h c a r e g i v e r s a n d c l i e n t s a r e o f t e n i s o l a t e d . T h e i r s e l f - e s t e e m a n d c o n f i d e n c e i n t h e i r a b i l i t y t o p r o v i d e a d e q u a t e c a r e a r e o f t e n d a m a g e d b y t h e c o n s t a n t b u r d e n , h o p e l e s s n e s s a n d f e e l i n g s o f g u i l t t h a t t h e y e x p e r i e n c e . T h e m e n t a l s t r e s s t h a t t h e s e c a r e g i v i n g s y s t e m s e n d u r e r e i n f o r c e s t h e i m p o r t a n c e o f i n c l u d i n g c o u n s e l l i n g a n d m e n t a l h e a l t h s u p p o r t s i n a n a t t e m p t t o s t r e n g t h e n t h e c a r e g i v i n g s y s t e m . I n t h e i n t e r v i e w s , c a r e g i v e r s i d e n t i f i e d t h e b e n e f i t s o f t h e s t i m u l a t i o n t h a t a s e r v i c e a n d r e s p i t e o p p o r t u n i t y b r o u g h t t o t h e m . A g a i n , t h e p o s i t i v e o u t c o m e o f i n t r o d u c i n g a new p e r s o n , i n p u t , o r i n f o r m a t i o n i n t o t h e c a r e g i v i n g s y s t e m i s i d e n t i f i e d a s a m a j o r b e n e f i t o f r e s p i t e s e r v i c e s . T h e f a m i l y ' s p e r s p e c t i v e i s b r o a d e n e d w h e n i t s s y s t e m b o u n d a r y i s e x p a n d e d t o i n c l u d e t h i s new s o u r c e o f e n e r g y a n d s t i m u l a t i o n . I n t e r v e n t i o n , h o w e v e r , c a n n o t be a s s u m e d t o be b e n e f i c i a l j u s t b y i t s e x i s t e n c e . T h e s e r v i c e m u s t be c o n s i s t e n t a n d r e l i a b l e s o t h a t t h e c a r e g i v e r s w i l l t r u s t a n d i n c o r p o r a t e t h e s u p p o r t i n t o t h e i r f i e l d o f o p t i o n s . T h e s e r v i c e m u s t be p r o v i d e d o n t h e b a s i s o f a n a s s e s s m e n t o f t h e f a m i l y ' s n e e d . S t r i c t p r o g r a m a n d e l i g i b i l i t y c r i t e r i a n e g a t e a n y a t t e m p t s t o 155 provide f l e x i b l e and responsive s e r v i c e s . As was noted e a r l i e r , c a r e g i v e r s p e r c e i v e a sharp d i v i s i o n between the formal care system and f a m i l y c a r e g i v i n g . S e r v i c e s are g e n e r a l l y seen as e x t e r n a l and f o r e i g n to the f a m i l y u n i t . T h i s may be a r e s u l t of value d i f f e r e n c e s and a gap i n the formal system's understanding of the c a r e g i v e r ' s e xperience. To be able to reach c a r e g i v e r s i n a way that i s a c c e p t a b l e to them i n v o l v e s s h i f t i n g a t t i t u d e s and c o n t r o l of the s i t u a t i o n . This issue of c o n t r o l i s d e a l t with i n d e t a i l i n the next s e c t i o n , but i s c l o s e l y l i n k e d to how s u c c e s s f u l a s e r v i c e i s i n p r o v i d i n g energy to the c a r e g i v i n g system. C a r e g i v e r s g e n e r a l l y want to maximize t h e i r a b i l i t y to provide care f o r t h e i r r e l a t i v e . They want to f e e l that they are meeting the c l i e n t ' s needs as best they can. By p r o v i d i n g a s e r v i c e to the c a r e g i v e r s that enables them to maximize t h e i r own energy and m o t i v a t i o n , the s e r v i c e may begin to break down the b a r r i e r s to a complementary r e l a t i o n s h i p between formal and i n f o r m a l supports. Whether that s e r v i c e i s one that g i v e s the c l i e n t the o p p o r t u n i t y to pursue per s o n a l l i f e goals and reduces h i s or her resentment or f e e l i n g s of being trapped, or one that s t i m u l a t e s the c l i e n t and b r i n g s a new p e r s p e c t i v e to the r e l a t i o n s h i p between the c l i e n t and c a r e g i v e r , the common theme i s the r e v i t a l i z a t i o n , the opening up of the system boundaries. The c a r e g i v i n g system i s s t i l l seen as separate from formal s e r v i c e s , but more open to a c c e p t i n g new energy and resources from i t s environment. 156 This d i s c u s s i o n has provided an i n t e r p r e t a t i o n of the need f o r i n t e r v e n t i o n from the p e r s p e c t i v e of a systems model that d e f i n e s i n t e r v e n t i o n i n terms of the s t i m u l a t i o n and energy that i t i n j e c t s i n t o the c a r e g i v i n g system. Case managers and c a r e g i v e r s shared many s i m i l a r values although the case managers were able to a r t i c u l a t e t h e i r suggestions i n system terms more c l e a r l y than c a r e g i v e r s . T h i s d i f f e r e n c e p o i n t s to the need for s e r v i c e to be aware of the p e r s p e c t i v e and i n s i g h t of the c a r e g i v e r . S e l f awareness i s the f i r s t s tep i n being able to d e f i n e one's own needs and to plan f o r a p p r o p r i a t e care and support. 157 Matrix III INTERVENTIONS BASED ON SYSTEM STIMULATION Case Manager P e r s p e c t i v e Caregiver P e r s p e c t i v e -expand system boundary through i n t r o d u c i n g s e r v i c e s - i n c r e a s e resources w i t h i n the f a m i l y system, not take away r o l e s -focus on education and cou n s e l 1 i n g - i n c r e a s e p r i o r i t y on emotion-a l and mental h e a l t h needs -adopt h o l i s t i c approach to h e a l t h needs and reduce compartmentalization of needs - i n c r e a s e awareness and present options -focus on dual b e n e f i t s of s e r v i c e s -develop community-based, respon s i v e and f l e x i b l e s e r v i c e s - i n c r e a s e personal time and freedom from burden -provide education and i n f o r -mation -provide s t i m u l a t i o n through a new s e r v i c e , person or input i n t o the f a m i l y that broadens t h e i r p e r s p e c t i v e -begin with s e r v i c e s based on acc e p t a b l e i n s t r u m e n t a l a i d -provide emotional support to increase s e l f esteem and reduce i s o l a t i o n -provide more f l e x i b l e , con-s i s t e n t , r e l i a b l e s e r v i c e s -provide s e r v i c e s based on f a m i l y need, not s t r i c t program c r i t e r i a 158 2. I n t e r v e n t i o n Based on Locus of C o n t r o l Issues: It i s d i f f i c u l t to separate the d i s c u s s i o n of i n t e r v e n t i o n o b j e c t i v e s r e l a t e d to the two core conceptual c a t e g o r i e s of t h i s r e s e a r c h . There i s much o v e r l a p and i n t e r c o n n e c t i o n between these i s s u e s . T h i s s e c t i o n expands on the i n t e r p r e t a t i o n that began i n the previous s e c t i o n by d e v e l o p i n g the concept of locus of c o n t r o l in more d e t a i l . A. Case Manager P e r s p e c t i v e In the development of any s o c i a l s e r v i c e , e s p e c i a l l y when geared a t l e s s powerful consumers, the issue of c o n t r o l over content and d e l i v e r y i s important. Case managers make many suggestions that i n v o l v e empowering c a r e g i v e r s . They f e e l that i n t e r v e n t i o n has to begin with v a l i d a t i o n of the c a r e g i v e r ' s experience and l e g i t i m a t i n g s e r v i c e s t a r g e t e d at the c a r e g i v e r . Program o b j e c t i v e s must r e f l e c t the c a r e g i v e r ' s own r i g h t to support separate from i t s impact on the c l i e n t . E ducation, c o u n s e l l i n g and mental.health supports are again r a i s e d as e s s e n t i a l to i n c r e a s i n g personal and f a m i l y r e s o u r c e s . The primary r o l e of c a r e g i v e r s i n meeting c l i e n t needs i s r e c o g n i z e d . In order to maximize the care provided to the c l i e n t and s i m u l t a n e o u s l y provide personal support and reinforcement to the c a r e g i v e r , s e r v i c e s must not t h r e a t e n to take away c o n t r o l or f u n c t i o n a l r o l e s Involved i n the c a r e g i v i n g r e l a t i o n s h i p . A h o l i s t i c d e f i n i t i o n of h e a l t h p l a y s an v i t a l r o l e i n s h i f t i n g the locus of c o n t r o l as w e l l as a d d r e s s i n g the need to 159 p r o v i d e a s y s t e m s - b a s e d i n t e r v e n t i o n . S e r v i c e s m u s t r e d u c e t h e c o m p a r t m e n t a l i z a t i o n o f n e e d s . C a r e g i v e r s m u s t f e e l t h a t t h e y h a v e a c c e s s t o c o m p r e h e n s i v e , r e l i a b l e a n d t r u s t w o r t h y s e r v i c e s . W i t h o u t t h e o p p o r t u n i t y t o d e v e l o p c o n f i d e n c e i n t h e s e r v i c e s b e i n g o f f e r e d , t h e o n l y w a y t h a t c a r e g i v e r s may f e e l a b l e t o e x e r t c o n t r o l o v e r t h e c a r e t h a t t h e c l i e n t r e c e i v e s i s b y r e f u s i n g t o a c c e p t e x t e r n a l s u p p o r t s . P r o f e s s i o n a l s s u c h a s t h e c a s e m a n a g e r s i n t h i s s t u d y , n e e d t o c o n s i d e r a l l a s p e c t s o f s u p p o r t s a n d r e s o u r c e s . A t t e m p t s t o e n c o u r a g e o r f a c i l i t a t e i n c r e a s e d f a m i l y i n v o l v e m e n t o r c o n t r o l m u s t t a k e t h e f o r m o f a m u t u a l e x p l o r a t i o n s o f o p t i o n s r a t h e r t h a n t h e i m p o s i t i o n o f e x p e c t a t i o n s o n f a m i l i e s . W h i l e i t . may be a d v a n t a g e o u s f o r f a m i l i e s t o b e c o m e m o r e i n v o l v e d i n some s i t u a t i o n s , t h i s a p p r o a c h r u n s t h e r i s k o f p u s h i n g a l r e a d y o v e r b u r d e n e d f a m i l i e s b e y o n d t h e i r l i m i t s . W hat i s a p p r o p r i a t e o r f u n c t i o n a l i n t e r m s o f f a m i l y i n v o l v e m e n t m u s t be d e f i n e d b y t h e f a m i l y a n d n o t i m p o s e d b y a n o u t s i d e s e r v i c e o r p r o f e s s i o n a l . T h e p o w e r o f d e f i n i t i o n i s c e n t r a l t o t h i s i s s u e o f c o n t r o l . T h e c a s e m a n a g e r s f e e l t h e i r i n f l u e n c e i s r e s t r i c t e d b y t h e h i g h c a s e l o a d s , l i m i t e d t i m e , j o b r e s t r i c t i o n s a n d p a p e r w o r k r e q u i r e m e n t s o f t h e i r j o b s . F o r t h e s e p r o f e s s i o n a l s , l o c u s o f c o n t r o l i s a l s o a n i s s u e . T h e y f e e l p o w e r l e s s t o w o r k t o e m p o w e r f a m i l i e s w h e n t h e y e x p e r i e n c e l i m i t s t o t h e i r own c o n t r o l o v e r t h e i r j o b s i t u a t i o n . T h e s e c a s e m a n a g e r s f e e l t h a t t h e y c a n be m o r e e f f e c t i v e i f t h e y a r e g i v e n m o r e a u t o n o m y a n d 160 f l e x i b i l i t y i n t h e i r jobs. They see a need to r e e v a l u a t e the p r i o r i t i e s of the program and focus more e f f o r t i n the area of p r e v e n t i o n . U n t i l they can become p r o a c t i v e i n t h e i r jobs, i n s t e a d of simply r e a c t i v e , they w i l l not be able to provide the kind of s e r v i c e to f a m i l i e s t h a t w i l l i n c r e a s e the a b i l i t y of t h i s i n f o r m a l network to cope and prevent a c r i s i s from d e v e l o p i n g . I n c r e a s i n g the c o n t r o l t h a t c a r e g i v e r s have over the involvement of formal s e r v i c e s n e c e s s i t a t e s an acceptance of the concept of shared r e s p o n s i b i l i t y . The f i n d i n g s of t h i s study c o n t a i n repeated mention of c o s t c o n s t r a i n t s . The s h o r t term, cost b e n e f i t b a s i s f o r determining s e r v i c e s as p e r c e i v e d by the case managers r e s t r i c t s the a b i l i t y of the program to c o n s i d e r long term c o s t s and b e n e f i t s . The concept of shared r e s p o n s i b i l i t y i s not i n t e g r a t e d i n t o the formal h e a l t h care system. Accepting payment f o r a s e r v i c e i s held to be synonymous with a c c e p t i n g r e s p o n s i b i l i t y f o r meeting the need. The f a m i l y continues to be seen as the system with primary r e s p o n s i b i l i t y f o r meeting care needs of e l d e r l y persons. While the i n f o r m a l system does provide the bulk of care f o r t h i s group, there are l i m i t s to i t s a b i l i t y to meet a l l needs. The s t a t e and formal care system need to accept a supplemental and complementary r o l e to the f a m i l y . Rather than p r o v i d i n g c r i s i s and s a f e t y net p r o v i s i o n s , t h i s s h a r i n g of r e s p o n s i b i l i t y should be i n c o r p o r a t e d i n t o the mandate of formal s e r v i c e s . The r e s p o n s i b i l i t y f o r care belongs to the s o c i e t y as a whole and i s 161 n o t s o m e t h i n g t h a t i s t r a n s f e r r e d f r o m o n e g r o u p t o t h e o t h e r . A s l o n g a s t h e v a l u e s a n d p h i l o s o p h y o f t h e f o r m a l s y s t e m d i c t a t e t h e r o l e o f f a m i l y , c a r e g i v e r s w i l l c o n t i n u e t o f e e l t h a t t h e y h a v e no c h o i c e s i n t h e way t h a t t h e y p r o v i d e c a r e . B. C a r e g i v e r P e r s p e c t i v e F a m i l y m e m b e r s i n t e r v i e w e d i n t h i s s t u d y e x p r e s s s e v e r a l i d e a s t h a t r e l a t e t o t h e c o n c e p t o f l o c u s o f c o n t r o l . A s h a s b e e n d i s c u s s e d , many o f t h e s e c a r e g i v e r s p e r c e i v e t h e m s e l v e s a s h a v i n g l i m i t e d c o n t r o l o v e r t h e i r c i r c u m s t a n c e s , d a i l y r o u t i n e s a n d t h e i r f u t u r e . G i v e n t h a t t h e p e r c p e t i o n o f n e e d c a n v a r y a c c o r d i n g t o c u l t u r a l b e l i e f s , s e r v i c e p r o v i d e r s a r e f a c e d w i t h t h e d i l e m m a o f c h o s i n g w h e t h e r t o i n t e r v e n e i n a n a t t e m p t t o c h a n g e v a l u e s o r t o p r o v i d e d i f f e r e n t l e v e l s o f s u p p o r t t o d i f f e r e n t g r o u p s . I t may p r o v e t o be f u t i l e t o t a k e o n t h e t a s k o f i n t e r v e n i n g t o c h a n g e p e o p l e ' s c u l t u r a l a n d v a l u e e x p e c t a t i o n s . One may a l s o q u e s t i o n t h e e t h i c s a n d v a l u e b i a s e s i n v o l v e d i f i n t e r v e n t i o n i s t a r g e t t e d a t c u l t u r a l b e l i e f s . W h i l e i t may be d i f f i c u l t t o b e c o m e d i r e c t l y i n v o l v e d i n p e r s o n a l e x p e c t a t i o n s t h a t l i m i t t h e p e r c e p t i o n o f c h o i c e a n d c o n t r o l , f o r m a l s e r v i c e s c a n b e c o m e i n v o l v e d i n d e v e l o p i n g o p t i o n s a n d r e s o u r c e s a v a i l a b l e o u t s i d e o f t h e i m m e d i a t e f a m i l y u n i t . I n f o r m a t i o n a n d e d u c a t i o n r e e m e r g e a s w a y s o f i n c r e a s i n g t h e c a r e g i v e r ' s a b i l i t y t o p l a n f o r h e r own s i t u a t i o n . I n c r e a s i n g t h e f l e x i b i l i t y a n d l o o s e n i n g t h e c r i t e r i a a s s o c i a t e d w i t h e x i s t i n g s u p p o r t a n d r e s p i t e s e r v i c e s w o u l d g i v e t h e c a r e g i v e r s t h e a b i l i t y t o f i t t h e s e r v i c e s t o t h e i r n e e d s r a t h e r 16 2 than always f e e l i n g t h a t they must s u i t t h e i r needs to the a v a i l a b l e supports. Most c a r e g i v e r s want more input i n t o the types of s e r v i c e s that are o f f e r e d to them, e s p e c i a l l y i n terms of the t i m i n g , schedule and access to these supports. Both the c l i e n t and the c a r e g i v e r can p e r c e i v e formal supports as t h r e a t e n i n g i f these s e r v i c e s f a i l to address the values and emotional needs of the f a m i l y . As noted e a r l i e r , r e s i s t a n c e to s e r v i c e s may be an attempt to exert continued c o n t r o l over t h e i r l i f e s i t u a t i o n s . For c l i e n t s who a l r e a d y f e e l v u l n e r a b l e , s e r v i c e s t h a t i n v o l v e removal from the home or i n t r o d u c t i o n of strange r o u t i n e s may be i n t e r p r e t e d as t h r e a t e n i n g to t h e i r l i f e s t y l e . If the c l i e n t and c a r e g i v e r have c o n t r o l over the involvement of LTC and other formal s e r v i c e s , the l i k e l i h o o d of those s e r v i c e s being r e j e c t e d due to t h e i r t h r e a t e n i n g nature i s reduced. In t r y i n g to understand where and how to intervene i n the c a r e g i v i n g system, understanding where i n d i v i d u a l s f e e l v u l n e r a b l e i s a necessary f i r s t s t e p . I n t e r v e n t i o n s must address these f e a r s by i n c r e a s i n g comfort through education and p u b l i c awareness. Programs must be s e n s i t i v e to c u l t u r a l and value d i f f e r e n c e s . I t i s impossible to design s p e c i f i c supports that s u i t a l l c o n s t e l l a t i o n s of need and v a l u e s , t h e r e f o r e the s e r v i c e s t h a t are developed must be f l e x i b l e . What t h i s d i s c u s s i o n has attempted to present i s the importance of locus of c o n t r o l as an issue i n d e s i g n i n g program i n t e r v e n t i o n s . If r e s p i t e i s seen i n terms of the b e n e f i t i t p r o v i d e s , t h e n t h e p e r c e p t i o n o f t h e r e c i p i e n t b e c o m e s t h e c e n t r a l d e t e r m i n i n g f a c t o r i n s e r v i c e p l a n n i n g . I n o r d e r f o r c l i e n t s a n d c a r e g i v e r s t o a p p r e c i a t e some f o r m o f r e l i e f , t h e s e r v i c e m u s t be p r e s e n t e d i n a w a y t h a t d o e s n o t a l i e n a t e o r t h r e a t e n . T h e c a r e g i v e r s m u s t f e e l t h a t t h e y h a v e some c o n t r o l o v e r t h e s e r v i c e — t h a t s o l u t i o n s a r e n o t b e i n g i m p o s e d e x t e r n a l t o t h e c a r e g i v i n g s y s t e m . I t h a s b e e n d e m o n s t r a t e d t h a t s e r v i c e s m u s t be p r o v i d e d f r o m a p e r s p e c t i v e t h a t i n v o l v e s a h o l i s t i c a p p r o a c h t o u n d e r s t a n d i n g n e e d a n d i n t e r v e n t i o n a n d c o n s i d e r a t i o n o f a c a r e g i v i n g s y s t e m . R e s p i t e i n v o l v e s i n t r o d u c i n g new e n e r g y i n t o t h e s y s t e m b y p r o v i d i n g t h e c a r e g i v e r w i t h some f o r m o f r e l i e f o r s t i m u l a t i o n . T h e s e r e s p i t e s e r v i c e s m u s t a l s o p e r m i t t h e c a r e g i v e r a c o n t i n u e d a n d i n c r e a s e d s e n s e o f c o n t r o l o v e r h e r own l i f e a n d o v e r w h a t k i n d o f i n p u t e n t e r s t h e c a r e g i v i n g r e l a t i o n s h i p . 164 M a t r i x I V I N T E R V E N T I O N S BASED ON LOCUS OF CONTROL C a s e M a n a g e r P e r s p e c t i v e C a r e g i v e r P e r s p e c t i v e - v a l i d a t e f a m i l y e x p e r i e n c e - p r o v i d e e d u c a t i o n a n d c o u n -s e l i n g t o i n c r e a s e p e r s o n a l a n d f a m i l y r e s o u r c e s - a c c e p t c o n c e p t o f s h a r e d r e s p o n s i b i 1 i t y - p r o v i d e c o u n s e l i n g a n d m u t u a l e x p l o r a t i o n o f l i m i t s a n d o p t i o n s f o r f a m i l y s u p p o r t - r e c o g n i z e s u p p l e m e n t a l r o l e o f f o r m a l s e r v i c e s - t a r g e t s e r v i c e s a t c a r e g i v e r a n d r e i n f o r c e t h e i r r i g h t t o s u p p o r t - u s e h o l i s t i c d e f i n i t i o n o f h e a l t h i n a s s e s s i n g n e e d - r e - e v a l u a t e p r i o r i t i e s o f p r o g r a m r e : p r e v e n t i o n - a d v o c a t e f o r m o r e t r u s t a n d f l e x i b i l i t y t o be g i v e n t o c a s e m a n a g e r s - p r o v i d e b e t t e r i n f o r m a t i o n a n d a c c e s s t o s e r v i c e s - i n c r e a s e t h e f l e x i b i l i t y a n d c h o i c e s i n c l u d e d i n f o r m a l s e r v i c e s - p r o v i d e c o u n s e l i n g a n d s u p p o r t t o h e l p c a r e g i v e r s a c c e p t l i m i t a t i o n s - l o o s e n s t r i c t c r i t e r i a o f s e r v i c e e l i g i b i l i t y - a l l o w f a m i l y i n p u t i n t o t h e c o n t e n t a n d d e l i v e r y o f s e r v i c e s t o r e d u c e t h r e a t t h a t c a n b e p e r c e i v e d 165 B a r r i e r s t o M e e t i n g N e e d H a v i n g p r e s e n t e d t h e t w o c o r e c a t e g o r i e s o f t h e r e s e a r c h a s t h e y r e l a t e t o n e e d a n d o b j e c t i v e s f o r i n t e r v e n t i o n , t h i s s e c t i o n p r o v i d e s a n i n t e r p r e t a t i o n o f t h e b a r r i e r s t h a t a r e f a c e d b y f a m i l i e s , f o r m a l c a r e p r o v i d e r s , a n d p r o g r a m p l a n n e r s i n o p e r a t i o n a l i z i n g i n t e r v e n t i o n o b j e c t i v e s t h a t s u p p o r t f a m i l y c a r e g i v i n g a n d a c o m p l e m e n t a r y f o r m a l / i n f o r m a l r e l a t i o n s h i p . 1. B a r r i e r s W i t h i n t h e I n f o r m a l S y s t e m : T h e f i n d i n g s i n t h i s r e s e a r c h d e m o n s t r a t e t h a t f a m i l i e s a r e o f t e n r e l u c t a n t t o i n v o l v e f o r m a l c a r e s e r v i c e s . T h i s r e s i s t a n c e c o n s t i t u t e s a n o b s t a c l e t o t h e f o r m a l s y s t e m i n i t s a t t e m p t t o p r o v i d e s u p p o r t . A. C a s e M a n a g e r P e r s p e c t i v e C a s e m a n a g e r s d i s c u s s m a n y o f t h e v a l u e s a n d r o l e e x p e c t a t i o n s h e l d . b y f a m i l y m e m b e r s a s b o t h p o s i t i v e a n d n e g a t i v e . T h e h i g h v a l u e p l a c e d o n s e l f s u f f i c i e n c y a n d t h e s t r o n g s e n s e o f o b l i g a t i o n a n d d u t y t h a t many c a r e g i v e r s a r e b e l i e v e d t o s h a r e r e i n f o r c e s t h e i r c o m m i t m e n t t o p r o v i d e c a r e . T h e s e same r o l e e x p e c t a t i o n s c a n l e a d t o f e e l i n g s o f g u i l t , r e s e n t m e n t , a n d a r e l u c t a n c e t o s e e k h e l p o r a d m i t t o t h e n e e d t o i n v o l v e o u t s i d e r e s o u r c e s . A l l o f t h e c a r e g i v e r s i n t h i s s t u d y w e r e f e m a l e . T h e i s s u e o f c a r e g i v e r r o l e e x p e c t a t i o n s c a n n o t b e s e p a r a t e d f r o m i s s u e s a d d r e s s i n g t h e r o l e o f women w i t h i n f a m i l i e s a n d s o c i e t y a s a w h o l e . A s p e r s o n a l e x p e c t a t i o n s a n d t h e o p p o r t u n i t i e s f o r i n v o l v e m e n t o u t s i d e t h e f a m i l y i n c r e a s e f o r women, t h e 166 e x p e c t a t i o n that they provide care and n u r t u r i n g w i t h i n the f a m i l y has not decreased. The p o t e n t i a l f o r g u i l t and burn-out i n c r e a s e s with the growing gap between demands and r e s o u r c e s . Repeatedly, case managers i d e n t i f y the f r u s t r a t i o n t h a t they f e e l when f a m i l i e s f i r s t seek out help d u r i n g a c r i s i s . These f a m i l i e s have t r i e d to cope for a long time on t h e i r own a n d hav e o £ t e n r e a c h e d a br e a king poi n t . The £ ami1y * s p e r c e p t i o n of a c r i s i s l i m i t s i t s openness to options that i n v o l v e a change i n t h i n k i n g or f a m i l y f u n c t i o n i n g s t y l e . These case managers f e e l t h a t f a m i l i e s o f t e n come to LTC having a l r e a d y decided that the s o l u t i o n they are seeking i s f a c i l i t y placement. The s t r e s s of c a r e g i v i n g may have become more than f a m i l i e s f e e l they can cope with and the only s o l u t i o n they see i s the t o t a l removal of the source of s t r e s s . Just as these f a m i l i e s were r e l u c t a n t to seek out help e a r l i e r , they now continue to r e s i s t changes that may help them cope with the care of the c l i e n t a t home. Case managers i n d i c a t e d that p e r c e p t i o n s of c o n t r o l , as w e l l as r o l e e x p e c t a t i o n s , r e l a t e to the b a r r i e r s c r e a t e d by f a m i l i e s . Many c a r e g i v e r s lack s o c i a l i z a t i o n or r o l e models for the part t h a t they now p l a y . In our aging s o c i e t y where the e l d e r l y can l i v e through long p e r i o d s of dependency, c a r e g i v e r s are faced with a s i t u a t i o n t h a t t h e i r experience does not prepare them f o r . They do not know what t h e i r f u t u r e w i l l be, how they should set p r i o r i t i e s and d e a l with competing demands, or what l i m i t s they should s e t to t h e i r sense of spousal or 167 f i l i a l r e s p o n s i b i l i t y . T h e r e may be c o n f l i c t w i t h i n t h e f a m i l y i f m e m b e r s d o n o t s h a r e t h e same v a l u e s o r i n t e r p r e t a t i o n . A l l o f t h e s e f a c t o r s c o n t r i b u t e t o t h e f e e l i n g s o f h e l p l e s s n e s s a n d l a c k o f c o n t r o l t h a t c a r e g i v e r s c a n e x p e r i e n c e . C a s e m a n a g e r s f e l t t h a t f o r m a l s e r v i c e s may be p e r c e i v e d b y t h e c a r e g i v e r a s a n o t h e r f a c t o r i n t h e s i t u a t i o n t h a t t h e y a r e u n a b l e t o c o n t r o l . T h i s f e a r o f l o s i n g f u r t h e r c o n t r o l c a n r e i n f o r c e t h e i r r e s i s t a n c e t o a c c e p t i n g t h e i n v o l v e m e n t o f o u t s i d e s e r v i c e s . T h i s r e s i s t a n c e t o c h a n g e a n d t h e i n v o l v e m e n t o f s u p p o r t s c r e a t e s a s i g n i f i c a n t b a r r i e r t o t h e d e v e l o p m e n t o f a f u n c t i o n a l h e l p i n g r e l a t i o n s h i p b e t w e e n i n f o r m a l a n d f o r m a l s u p p o r t n e t w o r k s . B. C a r e g i v e r P e r s p e c t i v e C a r e g i v e r s e x p r e s s e d many o f t h e same v a l u e s a n d c o n c e r n s i d e n t i f i e d b y t h e c a s e m a n a g e r s . T h e y f e e l a s t r o n g c o m m i t m e n t a n d o b l i g a t i o n t o r e m a i n t h e p r i m a r y c a r e g i v e r . T h e i r r o l e e x p e c t a t i o n s a n d f e e l i n g s o f g u i l t r e i n f o r c e t h e i r d e c i s i o n t o c a r r y t h e b u r d e n a l o n e . T h e l o n g h i s t o r y o f c a r e g i v i n g a n d l a c k o f a w a r e n e s s o f o p t i o n s h e i g h t e n t h e i r r e s i s t a n c e t o c h a n g e s t h a t i n v o l v e new o r u n k n o w n s e r v i c e s . C h a n g e t h r e a t e n s t h e c a r e g i v e r who h a s h a d a l o n g i n t e n s e i n v o l v e m e n t i n t h e c a r e o f t h e c l i e n t . M a n y o f t h e s e c a r e g i v e r s f i n d i t d i f f i c u l t t o a d m i t t o t h e i r own l i m i t a t i o n s a n d e m o t i o n a l n e e d s . T h e a c c e p t a n c e o f o u t s i d e s u p p o r t s i s i n t e r p r e t e d a s a f a i l u r e t o f u l f i l l t h e i r r o l e o b l i g a t i o n s . T h e n e e d t o m a i n t a i n some k i n d o f c o n t r o l 168 o v e r t h e i r s i t u a t i o n l e a d s many t o i n i t i a l l y r e s i s t s e r v i c e s . A t t h e p o i n t o£ a c r i s i s i t b e c o m e s n e c e s s a r y f o r t h e f o r m a l s y s t e m t o b e c o m e i n v o l v e d . F e e l i n g t h a t t h e y h a v e l o s t a l l c o n t r o l a t t h a t p o i n t , c a r e g i v e r s may w a n t t o a b d i c a t e t h e i r r o l e e n t i r e l y a n d h a v e t h e c l i e n t p l a c e d i n a f a c i l i t y . F a m i l y d y n a m i c s a n d c o n f l i c t a r e i s s u e s t h a t some c a r e g i v e r s i d e n t i f i e d a s c e n t r a l . T h e s t r u g g l e w i t h i n a f a m i l y t o d e f i n e i t s r o l e a n d o b l i g a t i o n c r e a t e s a f u r t h e r b a r r i e r t o t h e i n v o l v e m e n t o f L T C a n d o t h e r f o r m a l s e r v i c e s . F a m i l y m e m b e r s may r e s i s t o u t s i d e s e r v i c e s i n r e a c t i o n t o f a m i l y c o n f l i c t o r a s a r e s u l t o f t h e b e l i e f t h a t o t h e r f a m i l y m e m b e r s s h o u l d p r o v i d e t h e s u p p o r t . The b a r r i e r s t h a t e x i s t w i t h i n t h e f a m i l y c a r e g i v i n g s y s t e m r e l a t e t o a n d s u p e r c e d e t h e t w o c o r e c a t e g o r i e s d i s c u s s e d i n t h e b e g i n n i n g o f t h i s c h a p t e r . T h e f a m i l y s y s t e m b o u n d a r y may be c l o s e d t o t h e i n f l u e n c e o f o u t s i d e s u p p o r t s f o r a v a r i e t y o f r e a s o n s . T h e i s s u e o f c o n t r o l o v e r o n e ' s own r o l e a n d f u t u r e o f t h e c a r e g i v i n g r e l a t i o n s h i p c a n m a n i f e s t i t s e l f a s a n i m p e d i m e n t t o i n v o l v i n g s u p p o r t s e r v i c e s . 2. B a r r i e r s W i t h i n t h e F o r m a l S y s t e m : The f o r m a l s y s t e m a l s o i n c l u d e s many s t r u c t u r a l a n d i d e o l o g i c a l f a c t o r s t h a t i n h i b i t e f f e c t i v e i n v o l v e m e n t i n t h e c a r e g i v i n g s y s t e m . A. C a s e M a n a g e r P e r s p e c t i v e S t r u c t u r a l l y , many o f t h e s e r v i c e s t h a t a r e a v a i l a b l e h a v e l i m i t e d a c c e s s d u e t o s t a f f i n g , t i m e r e s t r i c t i o n s , c o s t , 169 t r a n s p o r t a t i o n problems or long w a i t i n g l i s t s . Case managers f e e l t h a t they have l i m i t e d time to p r o p e r l y assess need and provide f a m i l i e s with adequate i n f o r m a t i o n . People are not aware of options nor provided with the education that would a l l o w them to advocate for a p p r o p r i a t e s e r v i c e s on t h e i r own. Even when a need i s i d e n t i f i e d , long w a i t i n g l i s t s and concerns about the r e l a t i v e c o s t of s e r v i c e s can de l a y or prevent that s e r v i c e from becoming a v a i l a b l e . There are gaps i n the s e r v i c e s that are a p p r o p r i a t e e s p e c i a l l y f o r f a m i l i e s with s p e c i a l needs r e l a t e d to c u l t u r e or type of d i s a b i l i t y . The s t a f f t h a t provide care r e c e i v e l i m i t e d t r a i n i n g and low wages. The program and f a m i l i e s may expect more from these workers than i s r e a l i s t i c . The program i s geared to a s s e s s i n g need on an i n d i v i d u a l b a s i s . The assessment forms c l e a r l y r e l a t e to the i d e n t i f i e d p a t i e n t and r e f e r to the f a m i l y support i n l a t e r pages only. The low p r i o r i t y given to the needs of the f a m i l y and the emotional and mental h e a l t h of the c a r e g i v e r c o n t r i b u t e s to a compartmentalization of needs. The case managers o f t e n p e r c e i v e the need of one member of the f a m i l y i n c o n f l i c t with the needs of another and are faced with the dilemma of p r i o r i z i n g these needs. The whole idea of su p p o r t i n g c a r e g i v e r s may be a l i p s e r v i c e paid to an i n t e r v e n t i o n t h a t i s b e l i e v e d to provide c o s t e f f i c i e n t care to the i d e n t i f i e d c l i e n t . The case managers r e p e a t e d l y noted the b e n e f i t s that r e s p i t e s e r v i c e s have f o r the c l i e n t as w e l l as the c a r e g i v e r . I t i s l e f t to be 170 q u e s t i o n e d i f t h i s same c o n s i d e r a t i o n f o r t h e n e e d s o f t h e c a r e g i v e r i s s o p r o m i n e n t i n t h e a s s e s s m e n t o f s e r v i c e s d i r e c t e d a t t h e c l i e n t . W h a t t h e c a s e m a n a g e r s h a v e i d e n t i f i e d i s t h e s t r u c t u r a l l i m i t a t i o n s a n d i n f l e x i b i l i t y o f f o r m a l c a r e s e r v i c e s . T h e o b j e c t i v e s o f t h e p r o g r a m c o n t i n u e t o r e l a t e t o p h y s i c a l c a r e n e e d s o f t h e i d e n t i f i e d c l i e n t . M e n t a l h e a l t h s u p p o r t s a n d t h e a s s e s s m e n t o f s y s t e m n e e d s p l a y a m i n o r r o l e i n many f o r m a l s u p p o r t s . B. C a r e g i v e r P e r s p e c t i v e C a r e g i v e r s s e e many o f t h e s u p p o r t s a v a i l a b l e t h r o u g h L T C a s e i t h e r i n a p p r o p r i a t e o r i n a d e q u a t e . T h e y a r e c o n c e r n e d a b o u t t h e q u a l i t y o f t h e c a r e , t h e p r o g r a m f i t w i t h f a m i l y s c h e d u l e s , t i m e a n d a c c e s s d i f f i c u l t i e s a s w e l l a s t h e i n a b i l i t y o f i n f l e x i b l e s e r v i c e s t o m e e t c o n s t a n t l y c h a n g i n g n e e d s . M a n y s e r v i c e s a r e s e e n t o p r o d u c e m o r e s t r e s s t h a n t h e y r e l i e v e . T h e c a r e g i v e r s f i n d i t d i f f i c u l t t o a c c e s s t h e i n f o r m a t i o n t h e y n e e d o r w a n t i n o r d e r t o m a x i m i z e t h e b e n e f i t t o b o t h t h e c l i e n t s a n d t h e m s e l v e s . T h e l a c k o f f l e x i b i l i t y i s a m a j o r f a c t o r t h a t i m p e d e s t h e a b i l i t y o f t h e L T C s y s t e m t o m e e t t h e n e e d s o f o l d e r f a m i l i e s . T h e r e i s a n e e d f o r s p e c i a l i z e d s e r v i c e s t o a d d r e s s t h e u n i q u e c i r c u m s t a n c e s o f r e s p i t e c l i e n t s . I n - h o m e r e s p i t e i s s e e n a s a d v a n t a g e o u s f o r a n u m b e r o f r e a s o n , b u t t h i s r e s o u r c e i s i n s h o r t s u p p l y d u e t o l o w s a l a r y l e v e l s a n d a c o n c e r n f o r c o m p a r a t i v e c o s t w i t h o t h e r s e r v i c e s . C a r e g i v e r s f e e l t h a t t h e y m u s t o r g a n i z e t h e i r n e e d s t o f i t 171 the schedule of a v a i l a b l e homemakers or r e s p i t e beds. The program i s p e r c e i v e d to have l i m i t e d responsiveness to the c a r e g i v e r ' s needs. C r i t e r i a f o r e l i g i b i l i t y i s not always synonymous with need. C a r e g i v e r s have i d e n t i f i e d the i n f l e x i b l e nature of the program as a s i g n i f i c a n t b a r r i e r to i t s a b i l i t y to adequately meet the needs of c a r e g i v i n g f a m i l i e s . The formal care system i s p a r t of a l a r g e h e a l t h care bureaucracy. Both case managers and c a r e g i v e r s touched on f a c t o r s w i t h i n t h i s bureaucracy that i n h i b i t i t s a b i l i t y to respond to the needs of c l i e n t s and t h e i r f a m i l i e s i n the community. The i n f l e x i b i l i t y inherent i n such a l a r g e system along with i t s focus on i n d i v i d u a l needs c o n s t r a i n i t s a b i l i t y to provide e f f e c t i v e s e r v i c e s . L i m i t e d access due to time and c o s t exacerbate these b a r r i e r s . 172 Matrix V BARRIERS TO MEETING NEED Case Manager P e r s p e c t i v e Caregiver P e r s p e c t i v e B a r r i e r s i n the Informal System -values of s e l f s u f f i c i e n c y - r e l u c t a n c e to seek help -sense of o b l i g a t i o n , g u i l t - r o l e e x p e c t a t i o n s - l a c k of s o c i a l i z a t i o n - f e a r of l o s s of c o n t r o l - r e s i s t a n c e to change - c o n f l i c t w i t h i n f a m i l y -commitment to remain primary support - g u i l t , o b l i g a t i o n and r o l e expectat ions - f e a r of l o s s of c o n t r o l - r e s i s t a n c e to change - r e l u c t a n c e to admit l i m i t s and emotional needs - f a m i l y c o n f l i c t s B a r r i e r s i n the -lack of i n f o r m a t i o n or p u b l i c e d u c a t i o n - l i m i t e d access to s e r v i c e s -time and co s t r e s t r i c t i o n s -low p r i o r i t y to mental h e a l t h - q u a l i f i c a t i o n s of s t a f f -gaps i n s e r v i c e s -focus on i n d i v i d u a l needs -compartmentalization of needs Formal System - i n a p p r o p r i a t e or inadequate s e r v i c e s -time r e s t r a i n t s and l i m i t e d access and lack of i n f o r m a t i o n - s t r e s s c r e a t i n g s e r v i c e s - l a c k of f l e x i b i l i t y or s p e c i a l i z e d s e r v i c e s - l a c k of in-home s e r v i c e s - c r i t e r i a , not need based s e r v i c e s 173 3. B a r r i e r s to Formal/Informal Complement: Th i s l a s t s e c t i o n looks at the i d e o l o g i c a l b a r r i e r s t h a t f u n c t i o n to impede the development of a supplemental and complementary r e l a t i o n s h i p between f a m i l y c a r e g i v i n g and the formal care system. A. Case Manager P e r s p e c t i v e The LTC system i s seen by the case managers i n t h i s study as a p o s i t i v e and s u p p o r t i v e program. They recognize the many b e n e f i t s and s t r e n g t h s of the program along with the shortcomings of i t s present o r g a n i z a t i o n . There seems to be a consensus that formal supports should f u n c t i o n to supplement the a l r e a d y high degree of support t h a t i s provided by i n f o r m a l networks. The problems t h a t are faced i n t r y i n g to c r e a t e t h i s kind of r e l a t i o n s h i p r e l a t e to the values and medical model b a s i s of community h e a l t h care programs. As a l a r g e bureaucracy, LTC i s uncomfortable with ambiguity and f l e x i b i l i t y , yet these are seen as e s s e n t i a l elements i n the c r e a t i o n of respo n s i v e s e r v i c e s . Cost f a c t o r s and the focus of the h e a l t h care d o l l a r on acute and i n s t i t u t i o n a l care l i m i t the development of community based s e r v i c e s . There i s o f t e n a c o n f l i c t between the b e n e f i t s of the s e r v i c e to a f a m i l y and the system's assessment of the c o s t of t h a t b e n e f i t . Ageism continues to be pe r v a s i v e i n our s o c i e t y ' s v a l u e s . A low p r i o r i t y i s assigned to the needs of the e l d e r l y and t h e i r f a m i l i e s . Seen as unproductive members of s o c i e t y , t h i s p o p u l a t i o n must d e a l with a l i m i t e d commitment to p r o v i d i n g 174 r e s o u r c e s . A t r a d i t i o n a l medical model of d e f i n i n g need and d e l i v e r i n g s e r v i c e u n d e r l i e s the o b j e c t i v e s of the h e a l t h care system. Need i s determined by o b j e c t i v e c r i t e r i a and s e r v i c e s recommended by experts o u t s i d e of the f a m i l y system. There i s a stro n g r e s i s t a n c e to consumer c o n t r o l . The c r e a t i o n of a f l e x i b l e , r e s p o n s i v e program where c o n t r o l r e s t s with f a m i l i e s r e c e i v i n g the s e r v i c e i s c o n t r a r y to a t r a d i t i o n a l p a t e r n a l i s t i c , i n d i v i d u a l l y - b a s e d medical model approach to h e a l t h c a r e . While some f e e l t h a t community based s e r v i c e s move away from t h i s t r a d i t i o n a l view, p o l i c i e s s u p p o r t i n g f a m i l y involvement i n care p l a n n i n g may be viewed as j u s t i f i c a t i o n s f o r a cost e f f e c t i v e s e r v i c e d e l i v e r y system. B. Caregiver P e r s p e c t i v e For t h i s group of respondents, the is s u e s r e l a t e d to co-op e r a t i o n between formal and inf o r m a l networks are l e s s c l e a r l y a r t i c u l a t e d . These people are l e s s f a m i l i a r than case managers with the formal system of supports and f i n d i t d i f f i c u l t to develop an understanding of i t s values and i d e o l o g i c a l underpinnings. N e v e r t h e l e s s , t h e i r experiences do r a i s e concerns about cost l i m i t a t i o n s , the r e s i s t a n c e to consumer c o n t r o l and the b i a s of the medical system a g a i n s t d e v o t i n g r e s o u r c e s to the c h r o n i c needs of e l d e r l y people. C a r e g i v e r s are f r u s t r a t e d by the r e s i s t a n c e t h a t they face when t r y i n g to a l t e r schedules or i n f l u e n c e s e r v i c e content. The formal system at times presents as an a n t a g o n i s t i c f o r c e 175 r a t h e r than a a l l y . The formal o r g a n i z a t i o n and maze of b u r e a u c r a t i c r e g u l a t i o n s make i t d i f f i c u l t f o r f a m i l i e s to f e e l comfortable with h e a l t h care s e r v i c e s . A cooperative.and complementary r e l a t i o n s h i p r e q u i r e s a degree of f a m i l i a r i t y and comfort that does not always e x i s t i n the cont a c t between f a m i l i e s and formal supports. The b a r r i e r s d i s c u s s e d here have a p e r v a s i v e impact on the respondents' views of the r o l e and l i m i t a t i o n s of formal supports. Developing an understanding of community need and t r a n s l a t i n g t h a t i n t o program o b j e c t i v e s and s t r a t e g i e s r e q u i r e s a n a l y s i s at both micro and macro l e v e l s . The b a r r i e r s w i t h i n the f a m i l y and the LTC program must be regarded i n the context of l a r g e r s t r u c t u r a l and i d e o l o g i c a l f a c t o r s . The value s and phil o s o p h y of a medical model impact on program content and per s o n a l b i a s e s . Summary This chapter has presented an i n t e r p r e t a t i o n of the re s e a r c h f i n d i n g s as r e l a t e d to need and o b j e c t i v e s f o r r e s p i t e i n t e r v e n t i o n s . System s t i m u l a t i o n and locus of c o n t r o l models organize the concepts between c a t e g o r i e s . R e s p i t e programs address the c a r e g i v i n g system's need f o r energy and s t i m u l a t i o n . Support to the c a r e g i v e r can expand'the resources and boundary of the c a r e g i v i n g r e l a t i o n s h i p . Understanding t h i s system's s t r e n g t h s and weaknesses demands an examination of the locus of c o n t r o l w i t h i n the f a m i l y and 176 between formal and i n f o r m a l networks of support. Empowering the c a r e g i v e r i s a s i g n i f i c a n t way to strengthen the c a r e g i v i n g system. T h i s d i s c u s s i o n of energy and c o n t r o l provides a connection between the c a r e g i v e r s ' p e r c e p t i o n s and values and t h e i r r e a c t i o n to supports. I f r e s p i t e i s to be evaluated i n terms of i t s impact on the c a r e g i v e r s and t h e i r a b i l i t y to maintain t h e i r r o l e s , the s e r v i c e must be designed with an understanding of the f a m i l y system and power i s s u e s . The l a s t s e c t i o n of t h i s chapter i n v o l v e d an i n t e r p r e t a t i o n of the b a r r i e r s w i t h i n and between formal and i n f o r m a l support networks. T h i s understanding of c o n t e x t u a l f a c t o r s i s presented as an i n t e g r a l p a r t of d e v e l o p i n g e f f e c t i v e support s e r v i c e s . 177 CHAPTER 6 SUMMARY AND IMPLICATIONS Overview A summary o£ the study and a d i s c u s s i o n of major c o n c l u s i o n s are presented i n t h i s chapter. I m p l i c a t i o n s f o r h e a l t h care p o l i c y and s o c i a l work p r a c t i c e are a l s o addressed. The purpose of t h i s study was to g a i n an understanding of needs as r e l a t e d to r e s p i t e and f a m i l y support f o r the e l d e r l y from two p e r s p e c t i v e s : case managers and c a r e g i v e r s . R e s p i t e care s e r v i c e s c o n s t i t u t e an important step i n b u i l d i n g a complementary r e l a t i o n s h i p between formal and i n f o r m a l supports but the lack of r e s e a r c h on such programs, e s p e c i a l l y r e l a t e d to the understanding of needs and program o b j e c t i v e s , make t h i s study very t i m e l y . A q u a l i t a t i v e grounded theory approach was used due to the lack of p r e - e x i s t i n g work i n the area and the need to develop beginning c o n c e p t u a l i z a t i o n s and hypotheses about what the needs of aging f a m i l i e s are and how these may be met through r e s p i t e programs. Data were c o l l e c t e d through open-ended q u e s t i o n n a i r e s and focused i n t e r v i e w s (see appendixes C,E &F f o r q u e s t i o n n a i r e and i n t e r v i e w guides) with a sample of nine case managers i n the Long Term Care program and nine f a m i l y c a r e g i v e r s i n the community. The data were analyzed using a method of open and a x i a l coding, memo w r i t i n g and the development i n t e g r a t i v e matrixes 178 and c h a r t s . From t h i s process, core c a t e g o r i e s were developed and r e l a t e d to the themes and s u b c a t e g o r i e s of the data. The f i n d i n g s were presented s e p a r a t e l y f o r case managers and f a m i l y c a r e g i v e r s . The q u e s t i o n n a i r e s and i n t e r v i e w s with case managers r e v e a l e d the f o l l o w i n g major themes: 1) That the need f o r r e s p i t e i s great i n the community and e x i s t s across a great v a r i e t y of s i t u a t i o n s . P e rsonal and resource l i m i t a t i o n s , r o l e e x p e c t a t i o n s , and burden, along with program concerns with economic b e n e f i t s and r e s p i t e ' s c o n t r i b u t i o n to a supplemental r o l e with f a m i l y were f a c t o r s i d e n t i f i e d as s u p p o r t i n g the need f o r r e s p i t e care s e r v i c e s . 2) That there are many b e n e f i t s of r e s p i t e f o r c l i e n t s and t h e i r c a r e g i v e r s i n c l u d i n g s t i m u l a t i o n , education, emotional support and the p o t e n t i a l to a c t as a t r a n s i t i o n to i n s t i t u t i o n a l i z a t i o n . 3) That there are many b a r r i e r s to meeting need from both the formal and inf o r m a l system r e l a t e d to pers o n a l c h a r a c t e r i s t i c s , r o l e e x p e c t a t i o n s , resource u n a v a i l a b i l i t y or u n a c c e p t a b i 1 i t y . 4) That changes are needed i n order to expand e x i s t i n g s e r v i c e s , provide education and c o u n s e l l i n g , i n c r e a s e f l e x i b i l i t y and responsiveness to c l i e n t and c a r e g i v e r p e r c e p t i o n s as w e l l as re-examine the program p r i o r i t i e s . S e v e r a l themes emerged from the i n t e r v i e w s with c a r e g i v e r s that were r e l a t e d to those i d e n t i f i e d by case managers. These themes are summarized as the f o l l o w i n g : 179 1) That the s t r e s s e s of c a r e g i v i n g are an important f a c t o r i n t h e i r s i t u a t i o n ; these i n c l u d e constant r e s p o n s i b i l i t y , lack of choice and u n p r e d i c t a b i l i t y . 2) That the c a r e g i v e r ' s p e r c e p t i o n of h e r / h i s r o l e i s shaped by f e e l i n g s of o b l i g a t i o n , p e r s o n a l e x p e c t a t i o n s and there i s o f t e n a r e l u c t a n c e to give up the c a r e g i v i n g r o l e . 3) That the in f o r m a l supports a v a i l a b l e to the c a r e g i v e r are i n f l u e n c e d by t h e i r l i m i t e d a v a i l a b i l i t y , f a m i l y c o n f l i c t s , as w e l l as the c a r e g i v e r ' s r e l u c t a n c e to seek help from f a m i l y members. 4) That the r e s p o n s i b i l i t i e s of c a r e g i v i n g a f f e c t e d the c a r e g i v e r s i n a number of ways. This was expressed as lack of freedom and c o n t r o l , f e e l i n g trapped, g u i l t and other negative emot i ons. 5) That background f a c t o r s r e l a t e d to h i s t o r y , f a m i l y f u n c t i o n i n g and c u l t u r e are important c o n s i d e r a t i o n s . 6) That there are many b e n e f i t s of e x i s t i n g s e r v i c e s such as help with i n s t r u m e n t a l t a s k s , i n c r e a s e d freedom, s t i m u l a t i o n and emotional support. 7) That there are a l s o negative aspects of formal s e r v i c e . S e r v i c e s were d e s c r i b e d as i n a p p r o p r i a t e or unacceptable i n many s i t u a t i o n s . There was a lack of i n f o r m a t i o n and many negative a t t i t u d e s to i n s t i t u t i o n a l c a r e . 8) That there was a need f o r change and added s e r v i c e s . T h i s was addressed through requests for more i n f o r m a t i o n , e d u c a t i o n , f l e x i b l e s e r v i c e s and a broader range of r e s p i t e 18 0 s e r v i c e s . There was a concern that the q u a l i t y of care provided through the formal system be c o n s i s t e n t and of an acc e p t a b l e q u a l i t y . These themes summarize the data presented i n the i n t e r v i e w s . F u r t h e r a n a l y s i s r e v e a l e d two c e n t r a l conceptual c a t e g o r i e s that r e l a t e d to a l l of the su b c a t e g o r i e s and themes. These two o r g a n i z i n g themes were: 1) System s t i m u l a t i o n and r e v i t a l i z a t i o n through r e s p i t e , and 2) Locus of c o n t r o l as i t r e l a t e s to the c a r e g i v e r ' s a b i l i t y to cope and the b e n e f i t s d e r i v e d from s e r v i c e s . A systems model was a p p l i e d to understanding the needs of c a r e g i v i n g f a m i l i e s and ways to provide i n t e r v e n t i o n . The needs of f a m i l i e s can be understood i n terms of a lack of resources and r i g i d system boundaries that l i m i t the a b i l i t y of the f a m i l y to d e a l with i n c r e a s i n g and changing needs. Respite o f f e r s an o p p o r t u n i t y f o r the f a m i l y to r e c e i v e some form of s t i m u l a t i o n and new energy i n t o the c a r e g i v i n g r e l a t i o n s h i p . The boundary of t h i s system i s opened up a l i t t l e as the s e r v i c e i s i n c o r p o r a t e d i n t o the f a m i l y ' s r e p e r t o i r e of r e s o u r c e s . T h i s kind of i n t e r v e n t i o n i s based on p r o v i d i n g resources w i t h i n the f a m i l y , r a t h e r than removing tasks or r o l e s from the system. The second model t h a t i s c e n t r a l to understanding the needs of c a r e g i v e r s and t h e i r f a m i l i e s i s locu s of c o n t r o l . Many of the s t r e s s e s of c a r e g i v i n g were r e l a t e d to a lack of c o n t r o l and a sense of l i m i t e d c h o i c e s i n the r o l e as c a r e g i v e r . S e r v i c e s from the formal system were o f t e n r e j e c t e d due to the p e r c e p t i o n 181 that such i n t e r v e n t i o n f u r t h e r reduced the c o n t r o l that the caregiver could e x e r c i s e over her own s i t u a t i o n or the care of the c l i e n t . Respite care needs to be designed i n a way that increases the strengths and resources of the c a r e g i v e r s and thus f a c i l i t a t e s t h e i r a b i l i t y to e x e r c i s e choice and c o n t r o l In t h e i r s i t u a t i o n . A t h i r d issue was a l s o d e a l t with i n d e t a i l i n the i n t e r p r e t a t i o n of the research f i n d i n g s . The b a r r i e r s to meeting need from w i t h i n both the formal and informal systems as w e l l as b a r r i e r s to the development of a supplemental r e l a t i o n s h i p between these two systems of support were discussed as an important step i n understanding the need for i n t e r v e n t i o n and planning s e r v i c e s that would be e f f e c t i v e and appropriate. Conclus ions The f i n d i n g s of t h i s study imply that there are both b e n e f i t s from and l i m i t a t i o n s to e x i s t i n g r e s p i t e s e r v i c e s . Respite i n the form of r e s i d e n t i a l care, a d u l t day care and i n -home s e r v i c e s does provide r e s t and r e l i e f for the c a r e g i v e r . I t provides a new source of input and s t i m u l a t i o n that strengthens the c a r e g i v i n g system. These s e r v i c e s , however, are often i n f l e x i b l e and have l i m i t e d a b i l i t y to respond to the unique needs of each f a m i l y . What can be concluded from the f i n d i n g s of t h i s study i s that the need for r e s p i t e s e r v i c e s and programs that provide support and resources for c a r e g i v e r s i s great. However, there 18 2 i s a n e e d f o r m o r e t h a n i n s t r u m e n t a l a s s i s t a n c e a n d p r o g r a m s t h a t a l l o w t h e c a r e g i v e r t i m e a w a y f r o m c a r e g i v i n g r e s p o n s i b i l i t i e s . E d u c a t i o n , i n f o r m a t i o n a c c e s s , c o u n s e l l i n g a n d e m o t i o n a l s u p p o r t m u s t a l s o be i n c o r p o r a t e d i n t o a s y s t e m o f s u p p o r t i n o r d e r t o a d d r e s s t h e p h y s i c a l , e m o t i o n a l a n d s o c i a l n e e d s o f c a r e g i v i n g f a m i l i e s . S e r v i c e s n e e d t o be r e s p o n s i v e t o t h e i n d i v i d u a l c i r c u m s t a n c e s a n d t h e p e r s o n a l p e r c e p t i o n s o f c a r e g i v e r s . N e e d m u s t be a s s e s s e d o n t h e b a s i s o f c a r e g i v e r ' s a b i l i t y t o c o p e a s w e l l a s t h e c l i e n t ' s c a r e n e e d s w i t h i n t h e c a r e g i v i n g s y s t e m . W h i l e t h e s c o p e , v a r i e t y a n d f l e x i b i l i t y o f s e r v i c e s n e e d s t o be e x p a n d e d , i t i s a l s o n e c e s s a r y t o a d d r e s s t h e u n d e r l y i n g v a l u e s a n d a s s u m p t i o n s o f t h e h e a l t h c a r e s y s t e m a n d s o c i e t y a s a w h o l e t h a t h a v e s h a p e d t h e r o l e s o f b o t h t h e s t a t e a n d t h e f a m i l y i n p r o v i d i n g c a r e . T h e c o n c l u s i o n s o f t h i s s t u d y w i l l now be e x p a n d e d i n t e r m s o f t h e i r i m p l i c a t i o n s f o r p r o g r a m o b j e c t i v e s , s o c i a l w o r k p r a c t i c e a n d h e a l t h c a r e p o l i c y . I m p l i c a t i o n s f o r P r o g r a m D e s i g n a n d O b j e c t i v e s T h i s s t u d y h a s l e d t o t h e r e c o m m e n d a t i o n o f t h e f o l l o w i n g o b j e c t i v e s f o r r e s p i t e c a r e : 1) To r e d u c e t h e s t r e s s a n d n e g a t i v e e f f e c t s o f c a r e g i v i n g r e s p o n s i b i l i t i e s b y m a k i n g i n s t r u m e n t a l , e d u c a t i o n a l a n d e m o t i o n a l s u p p o r t s a v a i l a b l e t o t h e c a r e g i v e r . 2) To p r o v i d e s u p p o r t t o s t r e n g t h e n t h e c a r e g i v e r ' s 183 m o t i v a t i o n and increase her c o n t r o l over the c a r e g i v i n g s i t u a t i on. 3) To improve the q u a l i t y of care a v a i l a b l e to the c l i e n t by i n c r e a s i n g the resources a v a i l a b l e w i t h i n the f a m i l y c a r e g i v i n g system. 4) To help f o s t e r a complementary r e l a t i o n s h i p between formal and i n f o r m a l care networks by r e c o g n i z i n g the e x t e n s i v e support provided by f a m i l i e s and d e s i g n i n g s e r v i c e s that support, r a t h e r than r e p l a c e or e x p l o i t , t h i s involvement. These o b j e c t i v e s are designed to focus on the c a r e g i v e r r a t h e r than on c o s t savings or delayed i n s t i t u t i o n a l i z a t i o n . Such outcomes may r e s u l t from a system of support t h a t i s able to s u c c e s s f u l l y complement the care provided by f a m i l i e s , but short term cost b e n e f i t s should not be used to j u s t i f y such s e r v i c e s at the o u t s e t . Given these o b j e c t i v e s , the f o l l o w i n g are recommendations th a t need to be considered i n d e s i g n i n g r e s p i t e programs. 1) Expand i n s t i t u t i o n a l r e s p i t e to i n c l u d e more frequent use, more l o c a l and community based beds, s h o r t term a v a i l a b i l i t y and emergency a c c e s s . 2) Quotas and maximum days of r e s p i t e need to be expanded and assessed on the b a s i s of need, not a u n i v e r s a l l y set a l l o t m e n t . 3) Adult Day Care programs need to be more a c c e s s i b l e . T h i s can be accomplished through i n c r e a s i n g the f l e x i b i l i t y of space a l l o c a t i o n s , p r o v i d i n g more l o c a l l y based s e r v i c e s , and 184 expanding hours of o p e r a t i o n to respond to f a m i l y needs and schedules. 4) The need f o r r e s p i t e s e r v i c e should be assessed s e p a r a t e l y from c l i e n t needs and other s e r v i c e s . For example, homemaker hours could be assigned s e p a r a t e l y f o r the c l i e n t and c a r e g i v e r based on separate assessments of needs. 5) C o u n s e l l i n g support needs to be a v a i l a b l e w i t h i n l o c a l h e a l t h departments. Case managers need the time and mandate to provide i n d i v i d u a l and/or group c a r e g i v e r support. 6) Education and p u b l i c awareness of s e r v i c e s and r e s p i t e options must be i n c l u d e d to develop a connection between f a m i l i e s and formal support. In t h i s way, c r i s e s may be prevented and the q u a l i t y of l i f e f o r both the c l i e n t and c a r e g i v e r may be improved through i n c r e a s e d knowledge and use of support s e r v i c e s . T h i s study has p o i n t e d out the need to d e f i n e r e s p i t e i n terms of the b e n e f i t s d e r i v e d by c a r e g i v e r r a t h e r than the a c t u a l form or content of the s e r v i c e . T h i s kind of d e f i n i t i o n i m p l i e s that r e s p i t e s e r v i c e s w i l l take a v a r i e t y of forms and w i l l not be c o n f i n e d to t r a d i t i o n a l s h o r t s t a y r e s i d e n t i a l c a r e . The Long Term Care Program i n Vancouver i n f o r m a l l y r e c o g n i z e s the r e s p i t e b e n e f i t s of a d u l t day care as w e l l as some homemaker s e r v i c e s . T h i s broader range of s e r v i c e options needs to be f o r m a l l y r e c o g n i z e d , d e l i v e r e d and evaluated as r e s p i t e care. 185 I m p l i c a t i o n s f o r S o c i a l Work P r a c t i c e T h e c a s e m a n a g e r p o s i t i o n i n c l u d e d i n t h i s s t u d y i s c a r r i e d o u t b y c o m m u n i t y h e a l t h n u r s e s , r e h a b i l i t a t i o n t h e r a p i s t s , a n d s o c i a l w o r k e r s . I t i s h o p e d t h a t e a c h p r o f e s s i o n w i l l b r i n g a d i f f e r e n t p e r s p e c t i v e a n d e x p e r t i s e t o t h e d e l i v e r y o f l o n g t e r m c a r e s e r v i c e s . T h e c o n t r i b u t i o n o f s o c i a l w o r k t o t h e d e l i v e r y o f c o m m u n i t y b a s e d h e a l t h c a r e s e r v i c e s f o r t h e e l d e r l y a n d t h e i r f a m i l i e s i s c l o s e l y c o n n e c t e d t o t h e i m p o r t a n c e o f s y s t e m s t i m u l a t i o n a n d l o c u s o f c o n t r o l a s a d d r e s s e d b y t h i s s t u d y . I n t h e c a s e o f a g i n g f a m i l i e s w h e r e t h e c l i e n t a n d c a r e g i v e r may e x p e r i e n c e n u m e r o u s p e r s o n a l a n d s o c i a l l o s s e s a n d p e r c e i v e t h e m s e l v e s t o h a v e f e w o p t i o n s , i t i s i m p o r t a n t f o r s e r v i c e p r o v i d e r s a n d p r o g r a m s t o . b e s e n s i t i v e t o t h e n e e d f o r t h e s e p e o p l e t o r e g a i n some s e n s e o f c o n t r o l o v e r t h e i r s i t u a t i o n s . F o r many e l d e r l y a n d t h e i r f a m i l i e s , c o n t a c t w i t h a L o n g T e r m C a r e C a s e M a n a g e r o r s o c i a l w o r k e r i s t h e o n l y c o n n e c t i o n t h a t t h e y h a v e w i t h t h e f o r m a l s y s t e m . E a r l i e r i n t h i s s t u d y , c a s e m a n a g e r s w e r e r e f e r r e d t o a s g a t e k e e p e r s a n d a s s u c h h a v e a n i m p o r t a n t r o l e i n d e f i n i n g n e e d s a n d l i n k i n g p e o p l e w i t h a p p r o p r i a t e r e s o u r c e s a n d s e r v i c e s . T h e r e i s a n e e d f o r s o c i a l w o r k e r s i n l o n g t e r m c a r e s e t t i n g s t o d e v e l o p a n u n d e r s t a n d i n g o f t h e a g i n g f a m i l y s y s t e m s w h i l e a t t h e same t i m e , c o n t i n u i n g t o be s e n s i t i v e t o i n d i v i d u a l n e e d s a n d p e r c e p t i o n s . M a n y s o c i a l w o r k v a l u e s a n d g o a l s o f p r a c t i c e r e l a t e t o t h e i s s u e o f e m p o w e r m e n t : f a c i l i t a t i n g i n d i v i d u a l a n d g r o u p s e l f -186 a c t u a l i z a t i o n . This begins with a h o l i s t i c understanding of need and the p r o v i s i o n of support that i s responsive to i n d i v i d u a l s i t u a t i o n s . As members of an i n t e r d i s c i p l i n a r y team, s o c i a l workers can advocate for an understanding of need that incorporates f a m i l y h i s t o r y , i n d i v i d u a l coping s t y l e s , and s o c i a l and c u l t u r a l m i l i e u . The f i n d i n g s of t h i s study have pointed to the need for c a r e g i v e r s to receive v a l i d a t i o n , support and c o u n s e l l i n g i n order to define and accept the l i m i t s of t h e i r r o l e s as c a r e g i v e r s . S o c i a l workers, given the opportunity, have the s k i l l s to provide c o u n s e l l i n g and emotional support to c a r e g i v e r s . This kind of support provides r e s p i t e by i n c r e a s i n g the personal resources and coping a b i l i t i e s of the c a r e g i v e r . Planning s e r v i c e s must be done i n c o l l a b o r a t i o n with the f a m i l y . The d i s c u s s i o n of s e r v i c e s and the p o t e n t i a l for f a m i l y involvement must be done as a mutual e x p l o r a t i o n of options rather than the i m p o s i t i o n of s o l u t i o n s . I t i s through such co-operative and supportive r e l a t i o n s h i p s that f a m i l i e s may be able to maximize t h e i r own p o t e n t i a l as c a r e g i v e r s . The systems model of understanding f a m i l y networks that has been used by the s o c i a l work p r o f e s s i o n has been demonstrated to be a p p l i c a b l e to the d e f i n i t i o n of need and i n t e r v e n t i o n for c a r e g i v i n g r e l a t i o n s h i p s amongst the e l d e r l y (see Figure 2 ) . This model needs to be c o n t i n u a l l y emphasized i n education and p r a c t i c e . Working w i t h i n a h e a l t h care system and a medical model of s e r v i c e d e l i v e r y that defines need on the basis of 187 i n d i v i d u a l pathology presents a c h a l l e n g e to s o c i a l workers (see F i g u r e 1 ) . For the sake of p r o f e s s i o n a l i d e n t i t y as w e l l as the needs of aging f a m i l i e s i n the community, s o c i a l workers must continue to advocate t h i s approach to s e r v i c e as they work w i t h i n i n t e r d i s c i p l i n a r y teams. Subtle d i f f e r e n c e s i n assessment and the a t t i t u d e about s e r v i c e s mark the l i n e between imposing supports t h a t take something away from the c l i e n t and c a r e g i v e r versus p r o v i d i n g support w i t h i n the system. The r o l e of f a m i l y c a r e g i v i n g must be r e c o g n i z e d and a p p r e c i a t e d before s e r v i c e s w i l l a ct to supplement, r a t h e r than r e p l a c e f a m i l i e s . S o c i a l workers can advocate f o r t h i s r e c o g n i t i o n w i t h i n t h e i r work place and w i t h i n f a m i l i e s i n the community. This study r e v e a l e d many p e r s o n a l , p o l i t i c a l and s t r u c t u r a l b a r r i e r s between needs and the a b i l i t y of support systems to address these needs e f f e c t i v e l y . S o c i a l workers o f t e n focus i n t e r v e n t i o n on p e r s o n a l l i m i t a t i o n s and s t r e n g t h s ; however, they must a l s o act at p o l i c y and p l a n n i n g l e v e l s i n order to e f f e c t any p e r v a s i v e or l a s t i n g change in the r e l a t i o n s h i p between formal and i n f o r m a l care systems. Within h e a l t h care systems, s o c i a l workers must advocate for a more h o l i s t i c approach to care and become i n v o l v e d i n the development of p o l i c i e s and programs that r e f l e c t values of interdependency and s e l f - d e t e r m i n a t i o n . 188 P o l i c y I m p l i c a t i o n s T h i s study of the needs of c a r e g i v e r s for r e s p i t e has r a i s e d s e v e r a l i s s u e s at a p o l i c y l e v e l . Many of these issues r e l a t e to the values and assumptions of the medical model that has shaped the development of h e a l t h care s e r v i c e s . Others r i s e from b e l i e f s about the aging process and the r o l e t h a t the s t a t e should have i n p r o v i d i n g support for c a r e g i v e r s . The f o l l o w i n g p o l i c y i m p l i c a t i o n s r e f l e c t the need to change a t t i t u d e s and models of i n t e r v e n t i o n i n order to c r e a t e a complementary r e l a t i o n s h i p between formal and in f o r m a l care systems. Many of the recommendations made f o r program changes r e l a t e d to i n c r e a s i n g f l e x i b i l i t y and g i v i n g the c a r e g i v e r and f a m i l y more c o n t r o l over the content and d e l i v e r y of support s e r v i c e s . L i m i t i n g c h o i c e s and options a v a i l a b l e to r e c i p i e n t s f u n c t i o n s to in c r e a s e t h e i r dependency on the s t a t e by f u r t h e r reducing t h e i r p e r s o n a l c o n t r o l of t h e i r s i t u a t i o n . These kind of suggestions r e f l e c t a move towards consumer c o n t r o l of s e r v i c e , a concept c o n t r a r y to the b a s i c assumptions of the medical model. This study supports the involvement of the consumer i n the d e f i n i t i o n of need r a t h e r than t r e a t i n g him or her as an o b j e c t of out s i d e s c r u t i n y . T h i s type of change r e q u i r e s the development of p o l i c i e s t h a t recognize and l e g i t i m i z e the importance of c o l l a b o r a t i o n between f a m i l y and formal supports. F a m i l i e s need to be given i n f o r m a t i o n and cho i c e s about s e r v i c e s , not t r e a t e d as passive r e c i p i e n t s s l o t t e d i n t o programs. 1 8 9 F i g u r e 1 T R A D I T I O N A L , L I N E A R M E D I C A L MODEL A s s e s s i n g N e e d I n t e r v e n t i o n M e d i c a l M o d e l V P o l i c y M a k e r s P r o f e s s i o n a l s V C I i e n t C a r e g i v e r P o l i c y S e r v i c e P r o g r a m s C l i e n t C a r e g i v e r T h i s a p p r o a c h t o a s s e s s i n g n e e d a n d p l a n n i n g i n t e r v e n t i o n s b e g i n s w i t h a m e d i c a l m o d e l a n d i t s a s s o c i a t e d f o c u s o n p a t h o l o g y . I n d e p e n d e n c e i s h i g h l y v a l u e d w h i l e a t t h e same t i m e t h e c l i e n t i s s e e n p u r e l y a s a r e c i p i e n t o f s e r v i c e a n d h a s no i n p u t o r a c c e s s t o t h e p o l i c y p r o c e s s . N e e d i s d e f i n e d b y o u t s i d e p r o f e s s i o n a l a n d d i r e c t e d a t t h e i s o l a t e d i d e n t i f i e d c l i e n t . 190 F i g u r e 2 SYSTEM MODEL AND LOCUS OF CONTROL A s s e s s i n g Need I n t e r v e n t i o n The c e n t e r of t h i s system i s the c a r e g i v e r r e l a t i o n s h i p . P o l i c y makers, program p l a n n e r s and s e r v i c e d e l i v e r y p r o f e s s i o n a l s a re both d i r e c t l y and i n d i r e c t l y i n f l u e n c e d by t h i s r e l a t i o n s h i p as t h e y a s s e s s need and t a r g e t i n t e r v e n t i o n s . A h o l i s t i c u n d e r s t a n d i n g of h e a l t h and acc e p t a n c e of the v a l u e of i n t e r d e p e n d e n c e impact on the u n d e r s t a n d i n g of need and d e s i g n of f o r m a l s e r v i c e s . S e r v i c e s are d i r e c t e d a t the c a r e g i v i n g system, not a t a s i n g l e i n d i v i d u a l . F a m i l y and c l i e n t s have a c c e s s t o i n t e r a c t i o n w i t h p r o f e s s i o n a l s and i n f l u e n c e on the s e r v i c e s thus s h i f t i n g c o n t r o l away from the upper l a y e r s of a h e a l t h c a r e h i e r a r c h y and towards the a c t o r s i n the c e n t e r of the c a r e g i v i n g system. 1 9 1 S h i f t i n g a t t i t u d e s and reducing the b i a s e s of the medical model n e c e s s i t a t e s the adoption of a h o l i s t i c d e f i n i t i o n of h e a l t h s i m i l a r to the WHO d e f i n i t i o n that i n c o r p o r a t e s p h y s i c a l , mental and emotional w e l l - b e i n g w i t h i n s o c i a l and c u l t u r a l m i l i e u s . Health should be d e f i n e d as more than the absence of d i s e a s e or pathology, but r a t h e r , should r e f l e c t maximization of i n d i v i d u a l p o t e n t i a l . The s e p a r a t i o n between p h y s i c a l and mental h e a l t h must be e l i m i n a t e d . Health care s e r v i c e s need to be i n c o r p o r a t e d with mental h e a l t h and s o c i a l s e r v i c e s . Compartmentalizing need only serve to reduce the e f f e c t i v e n e s s of i n t e r v e n t i o n and leaves the r e c i p i e n t s ensing a f u r t h e r l o s s of c o n t r o l and c o n f u s i o n concerning the formal care system. The goal of s u p p o r t i n g and s t r e n g t h e n i n g i n f o r m a l care networks can be achieved through a v a r i e t y of i n t e r v e n t i o n s and should not be c o n f i n e d to i n s t r u m e n t a l and personal care h e a l t h s e r v i c e s . Understanding the t o t a l context of the c a r e g i v i n g s i t u a t i o n and having access to resources that address p h y s i c a l , mental, and s o c i a l needs i s necessary i n order to provide e f f e c t i v e and a p p r o p r i a t e s e r v i c e . The present h e a l t h care system focuses assessment and the p l a n n i n g of i n t e r v e n t i o n on the needs of the i d e n t i f i e d c l i e n t . Family support and s e r v i c e s provided to the c a r e g i v e r are o f t e n j u s t i f i e d on the b a s i s of the b e n e f i t s to the c l i e n t . In order to r e a l i z e a supplemental r o l e , formal supports must address the c a r e g i v e r as a l e g i t i m a t e r e c i p i e n t of support i n t h e i r own r i g h t . This may mean p r o v i d i n g s e r v i c e s to ' w e l l ' i n d i v i d u a l s . 192 The r o l e of the s t a t e should be seen as more than p r o v i d i n g a s a f e t y net of emergency s e r v i c e s c o n f i n e d to de v i a n t or d y s f u n c t i o n a l s i t u a t i o n s . Formal s e r v i c e s must increase t h e i r focus on p r e v e n t i o n and the goal of s e l f - a c t u a l i z a t i o n , r a t h e r than j u s t s u r v i v a l . The common response to demands f o r inc r e a s e d s e r v i c e s and changes i n h e a l t h supports i s that c o s t r e s t r a i n t s l i m i t the op p o r t u n i t y f o r development. While advocacy and p o l i c y changes may have to operate w i t h i n c e r t a i n f i s c a l and p o l i t i c a l r e a l i t i e s i n the short run, these c o n s t r a i n t s should not be taken as necessary and u n a l t e r a b l e c o n d i t i o n s . Our s o c i e t y has made c e r t a i n c h o i c e s and s e t p r i o r i t i e s f o r the al l o t m e n t of re s o u r c e s . Health s e r v i c e s and other s o c i a l programs must be considered i n the context of p o l i t i c a l and economic p o l i c i e s t h a t a f f e c t the funds and resources a v a i l a b l e . i m p l i c a t i o n f o r Furth e r Research This study has examined a broad range of needs f o r a v a r i e t y of r e s p i t e s e r v i c e s . T h i s e x p l o r a t o r y r e s e a r c h has supported the importance of f u r t h e r r e s e a r c h on needs and the development of support s e r v i c e s for c a r e g i v e r s of the e l d e r l y . E v a l u a t i o n s and attempts to e s t a b l i s h a c c o u n t a b i l i t y of support programs run the r i s k of r e p o r t i n g ambiguous or c o n t r a d i c t o r y r e s u l t s i f the programs have not been e s t a b l i s h e d on the b a s i s of w e l l grounded o b j e c t i v e s . Suggestions have been proposed f o r d e f i n i n g a broad range 193 of r e s p i t e options geared to p r o v i d i n g s t i m u l a t i o n to the c a r e g i v i n g system and i n c r e a s i n g the input of the c a r e g i v e r i n the content and d e l i v e r y of s e r v i c e . Such s e r v i c e s should be e s t a b l i s h e d on the b a s i s of c a r e f u l examination of community need and r e c e p t i v e n e s s . The e v a l u a t i o n of care outcomes as w e l l as c a r e g i v e r and c l i e n t r e a c t i o n s and p e r c e p t i o n s should be i n t e g r a t e d i n t o the development of r e s p i t e s e r v i c e s only a f t e r the development of r e s e a r c h based o b j e c t i v e s . The p r o f e s s i o n of s o c i a l work must expand i t s r o l e i n r e s e a r c h on r e s p i t e and other i s s u e s r e l a t e d to aging f a m i l i e s in order to e s t a b l i s h e f f e c t i v e i n t e r v e n t i o n s that meet demands for a c c o u n t a b i l i t y . The aging of our s o c i e t y i s a new phenomenon being faced by our s o c i e t y . Previous models of i n t e r v e n t i o n may not be a p p l i c a b l e i n t h i s new set of circumstances. Q u a l i t a t i v e r e s e a r c h i s becoming more accepted i n the area of program e v a l u a t i o n due to i t s a b i l i t y to provide r i c h data and r e c o n c e p t u a 1 i z a t i o n s of s o c i a l r e l a t i o n s h i p s . S o c i a l workers must become comfortable with the methods of data c o l l e c t i o n and a n a l y s i s i n v o l v e d i n t h i s kind of approach. Much of the d a i l y work of s o c i a l workers can be i n t e r p r e t e d as small s c a l e q u a l i t a t i v e r e s e a r c h with c l i e n t i n d i v i d u a l s or groups. The assessment s k i l l s t h a t s o c i a l workers have developed have the p o t e n t i a l to be a p p l i e d to l a r g e r s c a l e program and p o l i c y r e s e a r c h . The value of s o c i a l work knowledge and understanding of community need and program i s s u e s should not be c o n f i n e d to departmental d i s c u s s i o n s but should be t r a n s l a t e d i n t o r e s e a r c h and p o l i c y statements. 195 REFERENCES A l l e n , 1.(1983). Short Stay R e s i d e n t i a l Care f o r the E l d e r l y . London: The Th e t f o r d P r e s s . P o l i c y Studies I n s t i t u t e . A r l i n g , G. & McAuley, W. (1983). The F e a s i b i l i t y of P u b l i c Payments for Family C a r e g i v i n g . The G e r o n t o l o g i s t . 23(3), 300-306 . Auerbach, L. & Gerber, A. (1976). I m p l i c a t i o n s of the Changing  Age S t r u c t u r e of the Canadian P o p u l a t i o n . Ottawa, O n t a r i o : Science C o u n c i l of Canada. Bader, J.E. (1985, Summer). Respite Care: Temporary R e l i e f f o r C a r e g i v e r s . Women and Health. 10(2-3), 39-52. Beaver, M.L. (1983). Human S e r v i c e P r a c t i c e With the E l d e r l y . New Je r s e y : P r e n t i c e H a l l Inc. Berman, S., Delaney, D., Ga l l a g h e r , D., A t k i n s , P. & Graeber, M. (1987). Respite Care: A P a r t n e r s h i p Between a Veterans A d m i n i s t r a t i o n Nursing Home and F a m i l i e s to Care f o r F r a i l E l d e r s at Home. The G e r o n t o l o g i s t . 27(5), 581-584. Binney, E.A. (1988). The Retreat of the State and i t s T r a n s f e r of R e s p o n s i b i l i t y : The I n t e r g e n e r a t i o n a l War. I n t e r n a t i o n a l  J o u r n a l of Health S e r v i c e s . 18(1), 83-96. Branch, L. & J e t t e , A. (1985). E l d e r s Use of Informal Long Term Care A s s i s t a n c e . The G e r o n t o l o g i s t . 25(1), 51-56. Brody, E. (1977). Long Term Care of Older People: A P r a c t i c a l Guide.. New York: Human Sciences P r e s s . Brody, E. (1985). Parent Care as a Normative Family S t r e s s . 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(1983). R e s p i t e Care f o r the F r a i l E l d e r l y . Albany, New York: Center f o r the Study of Aging. 197 G l a s e r , B. & S t r a u s s , A. (1967). The Discovery of Grounded  Theory. Chicago: A l d i n e . Government of Canada, M i n i s t r y of Supply and S e r v i c e s . (1982). Canadian government Report on Aging. Ottawa, O n t a r i o : Government of Canada. Government of Canada, Department of N a t i o n a l Health and Welfare. (1983). Fact Book on Aging. Ottawa, O n t a r i o : Government of Canada. Guarnera, S. & W i l l i a m s , R. (1987). Optomism and Locus of C o n t r o l f o r Health and A f f i l i a t i o n Among E l d e r l y A d u l t s . J o u r n a l of Gerontology. 42(6), 594-595. Hanson, S., sauer, w. & Seelbach, W. (1983). R a c i a l and Cohort V a r i a t i o n s i n F i l i a l R e s p o n s i b i l i t y Norms. The  G e r o n t o l o g i s t . 23(6), 626-631. Horowitz, A. (1985). Sons and Daughters as C a r e g i v e r s to Older Parents: D i f f e r e n c e s i n Role Performance and Consequences. The G e r o n t o l o g i s t . 25(6), 612-617. J a r r e t t , W.H. (1985). C a r e g i v i n g Within K i n s h i p s Systems: Is A f f e c t i o n R e a l l y Necessary? The G e r o n t o l o g i s t . 25(1), 5-10 . Johnson, C H . (1983). Dyadic Family R e l a t i o n s h i p s and S o c i a l Support. The G e r o n t o l o g i s t . 23(4), 377-383. Kaufman, A. (1980, March). S o c i a l P o l i c y and Long Term Care of the Aged. S o c i a l Work. 25(2), 133-137. Kernaghan, K. & Kuper, 0. (1983). C o o r d i n a t i o n i n Canadian  Governments: A Case Study of Aging P o l i c y . Toronto, O n t a r i o : The N a t i o n a l I n s t i t u t e of P u b l i c A d m i n i s t r a t i o n of Canada. K i r b y , D. & Kay, P. (1987). Support the S i l e n t S u f f e r e r . Nursing  Times. 83(19), 42-44. K i r w i n , P. (1985-86, Wi n t e r ) . Adult Day Care: An I n t e g r a t e d Model. J o u r n a l of G e r o n t o l o g i c a l S o c i a l Work. 9(1), 59-71. K o f f , T.H. (1982). Long Term Care: An Approach to Serving the  F r a i l E l d e r l y . Boston: L i t t l e Brown and Company. Leiberman, M.A. & Tobin, S.S. (1983). The Experience of Old Age  S t r e s s r Coping, and S u r v i v a l . New York: B a s i c Books Inc. 198 Litwak, E. (1985). Helping the E l d e r l y . The Complementary Roles  of Informal Networks and Formal Systems. New York: G u i l f o r d Press . Lyndon B. Johnson School of P u b l i c A f f a i r s . (1977). A l t e r n a t e  Care for the E l d e r l y : An Annotated B i b l i o g r a p h y . A u s t i n , Texas: U n i v e r s i t y of Texas. Mangen, D. & Peterson, W. (1984). Health. Program E v a l u a t i o n and  Demography. M i n n i a p o l i s : U n i v e r s i t y of Minnesota Press. M i l e s , M.B. & Huberman, A.M. (1984). Q u a l i t a t i v e Data A n a l y s i s :  A Sourcebook of New Methods. Be v e r l e y H i l l s , C a l i f o r n i a . _ M i l l e r , D.B., G a l l e , N. & McCue, F. (1986, October). The R e a l i t i e s of Respite f o r F a m i l i e s , C l i e n t s and Sponsers. The G e r o n t o l o g i s t . 26(5), 467-470. Mindel, C.H. (1979). M u l t i g e n e r a t i o n a l Family Households: Recent Trends and I m p l i c a t i o n s f o r the Future. The G e r o n t o l o g i s t . 19(5), 456-463. Murden, R. & Faro, J . (1987, June). The Need f o r R e s p i t e Care F o l l o w i n g N a t u r a l D i s a s t e r s . The G e r o n t o l o g i s t . 27(3), 356-358 . N a t i o n a l A d v i s o r y C o u n c i l on Aging. (1981). P r i o r i t i e s f o r  Act i o n . Canada. N a t u r a l Supports Program. (1981). Strengthening Informal  Supports for the Aging. Theory, P r a c t i c e and P o l i c y  I m p l i c a t i o n s . New York: Community S e r v i c e s S o c i e t y of New York. Neugarten, B. (1982). Age or Need? P u b l i c P o l i c y f o r Older  People. C a l i f o r n i a : Sage P u b l i c a t i o n s . Neysmith, S.M. (1986). S o c i a l P o l i c y I m p l i c a t i o n s of an Aging S o c i e t y . Aging in Canada: S o c i a l P e r s p e c t i v e s . Marshal, V. (ed.). Toronto: F i t z h e n r y and Whiteside. Novak, M. (1985). S u c c e s s f u l Aging: The Myths, R e a l i t i e s and Future of Aging i n Canada. Markham, O n t a r i o : Penguin Books. Nusberg, C. ed. (1984). Innovative Aging Programs Abroad. I m p l i c a t i o n s f o r the United S t a t e s . C o n n e c t i c u t : Greenwood Press . Nydegger, C. (1983). Family T i e s of the Aged i n C r o s s - C u l t u r a l P e r s p e c t i v e . The G e r o n t o l o g i s t . 23(1), 26-32. 199 Pagel, M.D., Becker, J . & Coppel, D. (1985). Loss of C o n t r o l , Self-Blame and Depression: An I n v e s t i g a t i o n of Spouse C a r e g i v e r s of Alzheimer's Disease P a t i e n t s . J o u r n a l of  Abnormal Psychology. 94(2), 169-182. Patton, M.Q. (1980). Q u a l i t a t i v e E v a l u a t i o n Methods. B e v e r l y H i l l s : Sage P u b l i c a t i o n s . P h i l l i p s o n , C. & Walker, A. eds. (1986). Ageing and S o c i a l P o l i c y . Great B r i t a i n : Gower P u b l i s h i n g Company L i m i t e d . P i f e r , A. & Bronte, L. eds. (1986). Our Aging S o c i e t y : Paradox  and Promise. New York: W.W. Norton & Company. Pin k s t o n , E. & L i n s k , N. (1984). Care of the E l d e r l y : A Family  Approach. New York: Pergamon Press Inc. Rogerson, B. (1984, Dec. 12). Supporting the C a r e r s : Ignore Them at Your P e r i l . Nursing Times Communlity Outlook. 436-439. Sc h a r l a c h , A. & F r e n z e l , C. (1986, F e b r u a r y ) . An E v a l u a t i o n of I n s t i t u t i o n a l - B a s e d R e s p i t e Care. The G e r o n t o l o g i s t . 26(1), 77-82. S e l t z e r , B., Rheaume, Y., V o l c i e r , L., F a b s i z e w s k i , K., Lyon, P., Brown, J . & V o l i c e r , B. (1988). The Short Term E f f e c t s of I n - H o s p i t a l R e s p i t e on the P a t i e n t With Alzheimers Disease. The G e r o n t o l o g i s t . 28(1), 121-124. Shanas, E. (1979a). S o c i a l Myth as Hypothesis: The Case of the Family R e l a t i o n s of Old People. The G e r o n t o l o g i s t . 19(1), 3-9. Shanas, E. (1979b). The Family as a S o c i a l Support System i n Old Age. The G e r o n t o l o g i s t . 19(2), 169-174. Shanas, E. & Sussman, M. eds. (1977). Family, Bureaucracy and  the E l d e r l y . Durhan, N.C.: Duke U n i v e r s i t y P r e s s . S i l l i m a n , R. & Sternberg, J . (1988). Family C a r e g i v i n g : Impact of P a t i e n t F u n c t i o n i n g and U n d e r l y i n g Causes of Dependency.The G e r o n t o l o g i s t . 28(3), 377-382. S l i v i n s k e , L.R. & F i t c h , V.L. (1987). The E f f e c t s of C o n t r o l Enhancing I n t e r v e n t i o n s on the Wellbeing of E l d e r l y I n d i v i d u a l s L i v i n g i n a Retirement Community. The  G e r o n t o l o g i s t . 27(2), 176-181. St r a u s s , A. (1987). Q u a l i t a t i v e A n a l y s i s For S o c i a l S c i e n t i s t s . New York: Cambridge U n i v e r s i t y P r e s s . 2 00 S p e n c e , D.L. & M i l l e r , D.B. ( 1 9 8 6 ) . F a m i l y R e s p i t e f o r t h e E l d e r l y A l z h e i m e r ' s P a t i e n t . J o u r n a l o f G e r o n t o l o g i c a l  S o c i a l W o r k . 9 ( 2 ) , 1 0 1 - 1 1 2 . S t o l l e r , E & E a r l , L . ( 1 9 8 3 ) . H e l p w i t h A c t i v i t i e s o f E v e r y d a y L i f e : S o u r c e s o f S u p p o r t f o r t h e N o n - I n s t i t u t i o n a l i z e d E l d e r l y . T h e G e r o n t o l o g i s t . 2 3 ( 1 ) , 6 4 - 7 0 . Q u i n n , W. & H u g h s t o n , G. ( 1 9 8 4 ) . I n d e p e n d e n t A g i n g : F a m i l y a n d  S o c i a l S y s t e m s P e r s p e c t i v e s . U n i t e d S t a t e s : A s p e n S y s t e m s C o r p o r a t i o n . W a r d , R.A., S h e r m a n , S. & L a G o r y , M. ( 1 9 8 4 ) . I n f o r m a l N e t w o r k s a n d K n o w l e d g e o f S e r v i c e s f o r O l d e r P e r s o n s . J o u r n a l o f  G e r o n o n t o l o g y . 3 9 ( 2 ) , 2 1 6 - 2 2 3 . Z a r i t , S.H., R e e v e r , K . E . & B a c h - P e t e r s o n . ( 1 9 8 0 ) . R e l a t i v e s o f t h e I m p a i r e d E l d e r l y : C o r r e l a t e s o f F e e l i n g s o f B u r d e n . T h e  G e r o n t o l o g i s t . 2 0 ( 6 ) , 6 4 9 - 6 5 5 . 202 Appendix B Consent Form P e r s p e c t i v e s on Need: The Issue of r e s p i t e Care f o r the  E l d e r l y The proposed i n t e r v i e w i s p a r t of a r e s e a r c h p r o j e c t being conducted through the U n i v e r s i t y of B r i t i s h Columbia's School of S o c i a l Work and the Vancouver Health Department. Lynne C u r i e , a master's student i n S o c i a l Work i s the r e s e a r c h e r . The purpose of t h i s p r o j e c t i s to help us understand the problems that f a m i l i e s face i n c a r i n g f o r d i s a b l e d e l d e r l y i n t h e i r homes. To do t h i s , we are i n t e r v i e w i n g people who work for Long Term Care and f a m i l i e s such as you. The goal i s to help Long Term Care B e t t e r meet the needs of f a m i l i e s r e c e i v i n g s e r v i c e s . Your p a r t i c i p a t i o n i n t h i s r e s e a r c h would mean th a t you would be interviewed by the r e s e a r c h e r . The i n t e r v i e w , o c c u r r i n g i n your home, w i l l take approximately one hour at a time convenient to you. Your p a r t i c i p a t i o n i s p u r e l y v o l u n t a r y and w i l l have no e f f e c t on the s e r v i c e t h a t you r e c e i v e from Long Term Care. If you agree to p a r t i c i p a t e i n t h i s r e s e a r c h , you may end the i n t e r v i e w at any p o i n t and you a l s o have the r i g h t to r e f u s e to answer any q u e s t i o n i f you so d e s i r e . A l l i n f o r m a t i o n w i l l be kept s t r i c t l y c o n f i d e n t i a l . I have read and understood the p r o j e c t and consent to be i n t e r v i e w e d . S i g n a t u r e : Date: 203 Appendix C Caregiver Interview O u t l i n e The f o l l o w i n g i s an o u t l i n e of the t o p i c s that I w i l l attempt to cover i n the i n t e r v i e w s with c a r e g i v e r s . As the in t e r v i e w s are g e n e r a l l y non-scheduled, the order, working and p r e s e n t a t i o n of the t o p i c s w i l l vary between i n t e r v i e w s . I have in c l u d e d samples of questions to probe and e l a b o r a t e on each t o p i c area, but the i n t e r v i e w s w i l l not n e c e s s a r i l y be c o n f i n e d to these samples--they are merely i n c l u d e d here to give a c l e a r e r understanding of how the i n t e r v i e w may prog r e s s . 1. Describe the experience of p r o v i d i n g care f o r your f a m i l y member. Eg. What do you have to help your spouse with i n the morning? What do you days look l i k e ? Do you f e e l t h a t you can leave your f a m i l y member alone f o r any l e n g t h of time? 2. Why are you i n t h i s c a r e g i v i n g r o l e ? What i s most d i f f i c u l t , most s t r e s s f u l f o r you? Do you have other f a m i l y r e s p o n s i b i l i t i e s ? How long have you had to provide care f o r t h i s person? Do you f i n d the p h y s i c a l care d i f f i c u l t or i s the constant need to provide s u p e r v i s i o n harder f o r you to cope with? 3. What kind of support or help do you get from f r i e n d s , neighbors and fa m i l y ? Who comes to v i s i t you? Do they help you with anything? How o f t e n does your f a m i l y v i s i t or help out? 4. What kind of help do you get from Long Term Care or other agencies? Do you get homemaker s e r v i c e ? How o f t e n / What about Adult Day Care? Does any other agency or s e r v i c e give you help? 5. How do these two kinds of support d i f f e r f o r you? Are there t h i n g s about homemaker that you p r e f e r over the help of your f a m i l y ? What kinds of t h i n g s does your f a m i l y help you best with? In what ways might your f a m i l y be a b e t t e r place to get help? Why i s Long Term Care the best place f o r other kinds of t h i n g s ? 6. What would you d e s c r i b e as your need f o r help or support a t t h i s time? What about the f u t u r e ? Do you need s e r v i c e s t h a t provide r e s t of r e l i e f from l o o k i n g a f t e r your f a m i l y member? What do you think w i l l happen i n the f u t u r e ? Have you made any plans or thought about how you w i l l keep up your own s t r e n g t h and h e a l t h i n the long run? 7. Have you ever heard of r e s p i t e care before? What does t h i s mean to you? Have you ever been o f f e r e d t h i s kind of s e r v i c e before? Would any of the f o l l o w i n g kinds of help be u s e f u l to you? a. p l a c i n g your f a m i l y member i n a f a c i l i t y f o r periods of time, eg. one to two weeks once every s i x months or once a year? b. having t h i s kind of temporary admission a v a i l a b l e more o f t e n , eg. every two or three months? c. having access to a day f a c i l i t y or a d u l t day care that your f a m i l y member would attend one or two days a week? d. Having a worker from one of the homemaking agencies come one or two afternoons a week to s t a y and care f o r your f a m i l y member while you went out? e. having access to a bed i n a f a c i l i t y i n case of emergency such as g e t t i n g s i c k y o u r s e l f , or any other f a m i l y c r i s i s ? f. any other suggestions of s e r v i c e s t h a t might be u s e f u l i n p r o v i d i n g r e s t and r e l i e f to you, the c a r e g i v e r ? 8. I f any of the above s e r v i c e seemed u s e f u l , please expand on how you think t h a t they would be h e l p f u l . Do you t h i n you need such s e r v i c e s now? Do any of the s e r v i c e s t h a t you r e c e i v e now sound l i k e these examples? 9. I you had the o p p o r t u n i t y to t e l l the Health Department your o p i n i o n about t h e i r s e r v i c e , what would you say? What should they keep doing? What should they change or add? Appendix D Data C o l l e c t i o n s Sheet f o r Chart Review 1. Name: 2. C l i e n t Number: 3. Address: 4 . Age of C l i e n t : 5. C l i e n t ' s Gender: 6. Diagnosis of C l i e n t : _ 7. Care L e v e l of C l i e n t : 8. Date of I n i t i a l R e f e r r a l to LTC: 9. Primary C a r e g i v e r : 10. L o c a t i o n of Primary C a r e g i v e r : 11. Other People i n C l i e n t ' s Home: 12. References to Caregiver Burden or S t r e s s : If Contacted f o r Study: Name of Case Manager: . Acceptance or Refu s a l to P a r t i c i p a t e : Reason f o r R e f u s a l i f Any 206 Appendix E Long Term Care Case Manager Q u e s t i o n n a i r e T h i s q u e s t i o n n a i r e i s part of a r e s e a r c h p r o j e c t e n t i t l e d " P e r s p e c t i v e s on Need: The Issue of Respi t e Care f o r the E l d e r l y " being conducted by Lynne C u r i e , a S o c i a l Work masters student at UBC i n c o o p e r a t i o n with the Vancouver Health Department Co n t i n u i n g Care D i v i s i o n . The purpose of t h i s p r o j e c t i s to provide a b e t t e r understanding of the need f o r r e s p i t e and f a m i l y supports f o r the e l d e r l y from the p e r s p e c t i v e s of Long Term Care Case Managers, t h e i r c l i e n t s and c a r e g i v e r s . The goal i s to f a c i l i t a t e a b e t t e r c o o r d i n a t i o n between i d e n t i f i e d need and a v a i l a b l e r e s o u r c e s . Your p a r t i c i p a t i o n i s p u r e l y v o l u n t a r y and r e f u s a l w i l l have no a f f e c t on your p o s i t i o n w i t h i n the Health Department. Completion of t h i s form w i l l c o n s t i t u t e your consent to p a r t i c i p a t e i n t h i s r e s e a r c h p r o j e c t . Information w i l l be kept c o n f i d e n t i a l . Names w i l l o n l y be used to correspond q u e s t i o n n a i r e s with i n t e r v i e w s to be hel d l a t e r . Once the in t e r v i e w s are completed, manes w i l l be de s t r o y e d . T h i s form w i l l take only t h i r t y to f o r t y minutes of your time. A f t e r completion of t h i s p r o j e c t , each h e a l t h u n i t w i l l r e c e i v e a r e p o r t of the f i n d i n g s from the r e s e a r c h e r . Thank you f o r your c o o p e r a t i o n . S e c t i o n I 1. Name 2. Health U n i t 3. P r o f e s s i o n a l Background 4. Years with LTC S e c t i o n II Please read the f o l l o w i n g s c e n a r i o s . In each example you are asked to complete three b r i e f g u e s t i o n s . 207 Example 1: A 69 year o l d diagnosed with Alzheimer's Disease e i g h t years ago i s being cared f o r at home by h i s 58 year o l d wife. His c o n d i t i o n has g r a d u a l l y d e t e r i o r a t e d over the past few years and he has r e q u i r e d constant s u p e r v i s i o n f o r the past two or three years. His wife i s f i r m l y committed to c a r i n g f o r her husband at home, but the burden of t h i s r e s p o n s i b i l i t y i s t a k i n g an emotional and p h y s i c a l t o l l . T h e i r two sons l i v e i n the c i t y and t r y to support t h e i r mother, but are i n v o l v e d p r o f e s s i o n a l s with t h e i r own f a m i l i e s . They f e e l t h a t , f o r t h e i r mother's sake, t h e i r f a t h e r should be placed i n r e s i d e n t i a l c a r e . To date, t h e i r mother has not even agreed to r e c e i v e in-home supports. Her primary support comes from the youngest daughter aged 22 who s t i l l l i v e s at home and attends u n i v e r s i t y . Three times i n the l a s t s i x months, t h i s man has been admitted to h o s p i t a l i n an attempt to monitor h i s medication and e s t a b l i s h some c o n t r o l over h i s behavior and s l e e p i n g p a t t e r n s . The h o s p i t a l s o c i a l worker has recommended w a i t l i s t i n g i n her r e f e r r a l , but the wife has continued to d e c l i n e t h i s s u g g e s t i o n . 1. What are the major i s s u e s i n t h i s s i t u a t i o n ? 2. What are the supports and s t r e s s e s to the c a r e g i v e r ? 3. What would be your recommendations f o r s e r v i c e s i n t h i s s i t u a t i o n ? What would be your care plan? 208 Example 2: A 7 5 year o l d woman has approached Long Term Care r e q u e s t i n g placement f o r her husband. Up u n t i l two months ago, the wife r e p o r t e d no concerns of problems. Her husband was admitted to h o s p i t a l f o r a TURP and has s i n c e been e x h i b i t i n g confused behavior. For s e v e r a l days, he d i d not recognize h i s wife, and then spoke to her about t h e i r e a r l y days of marriage--a p p a r e n t l y r e - l i v i n g h i s past. When i n h o s p i t a l , he was very pleasant and c o o p e r a t i v e with care, but was c o n s t a n t l y g e t t i n g l o s t on the wards. He recovered p h y s i c a l l y from h i s surgery and was dis c h a r g e d the same week t h a t Long Term Care r e c e i v e d the r e f e r r a l from the wife. There are two married daughters i n the c i t y who have frequent s u p p o r t i v e c o n t a c t with t h e i r ' mother. They are u n c e r t a i n about what the a p p r o p r i a t e course of a c t i o n should be but f e e l t h a t the request f o r placement may be necessary. What are the major i s s u e s i n t h i s s i t u a t i o n . What are the supports and s t r e s s e s to the c a r e g i v e r ? 3. What are your recommendation, i f any, f o r s e r v i c e s ? What i s your care plan i n t h i s s i t u a t i o n ? 209 Example 3: Mr. and Mrs. N. have been r e c e n t l y r e f e r r e d to Long Term Care. Mrs. N. was j u s t d i s c h a r g e d from h o s p i t a l a f t e r r e c o v e r i n g from a CVA that she s u f f e r e d four months ago. Although . s t i l l e x p e r i e n c i n g some weakness, Mrs. N. has regained most of her p h y s i c a l f u n c t i o n i n g a b i l i t y . The s t r o k e , however, has l e f t her a p h a s i c . She i s unable to communicate v e r b a l l y and appears to have d i f f i c u l t y comprehending what other people are saying at times. She continues to attend speech therapy as an o u t p a t i e n t , but there has been l i m i t e d p rogress. Mrs. N's daughter from Toronto i s v i s i t i n g f o r two months to help her mother s e t t l e i n at home. The other two c h i l d r e n i n the f a m i l y a l s o l i v e i n e a s t e r n Canada and v i s i t a n n u a l l y . The daughter has expressed a concern on beh a l f of the other f a m i l y members that t h e i r f a t h e r may be unable to cope with the care needs of t h e i r mother. They s t a t e t h at t h e i r parents have had a very c o n f l i c t u a l marriage and have not been ' c l o s e ' f o r many e a r s . Mr. N. s t a t e s that he i s w i l l i n g to accept r e s p o n s i b i l i t y for h i s w i f e ' s care but i n the month that Mrs. N. has been home there have been s e v e r a l emotional outburst p r e c i p i t a t e d by f r u s t r a t i o n over the d i f f i c u l t y - t h a t they have communicating. 1. What are the major i s s u e s i n t h i s s i t u a t i o n ? 2. What the supports and s t r e s s e s to the c a r e g i v e r ? 3. What would be your recommendations f o r s e r v i c e s i n t h i s s i t u a t i o n ? What would be your care plan? 2 1 0 Example 4 : Mrs. A. i s a 94 year o l d woman who l i v e s with her 68 year o l d widowed daughter. They have l i v e d together f o r t h i r t y y e a r s . There are two other sons who a l s o l i v e i n the Vancouver area and s e v e r a l g r a n d c h i l d r e n many of whom seem to have r e g u l a r c o n t a c t with Mrs. A and her daughter. Although very m e n t a l l y a l e r t and b r i g h t , Mrs. A. i s s e v e r e l y immobilized by a r t h r i t i s . Her daughter must help her with most of the a c t i v i t i e s of d a i l y l i v i n g and t r a n s f e r r i n g from her bed or c h a i r to a wheelchair. The daughter has i n c r e a s i n g l y become co n f i n e d to her home i n the past year as Mrs. A's care needs have i n c r e a s e d . The r e f e r r a l to Long Term Care was i n i t i a t e d by the daughter's f a m i l y p h y s i c i a n who was concerned about the p h y s i c a l t o l l and s i g n s of d e p r e s s i o n t h a t were becoming apparent and a f f e c t i n g the daughter's own h e a l t h . Mrs. A. has suggested to her f a m i l y that she may co n s i d e r an a p p l i c a t i o n to a n u r s i n g f a c i l i t y . 1 . What are the major i s s u e s i n t h i s s i t u a t i o n ? 2. What are the supports and s t r e s s e s to the c a r e g i v e r ? 3. What would be your recommendations f o r s e r v i c e s i n t h i s s i t u a t i o n ? What would be your care plan? 211 Appendix F Follow-up Interview With Case Managers 1. When you went over these case s c e n a r i o s , were there any i s s u e s or problems that stood out as important to you i n a s s e s s i n g each case? Are these i s s u e s s i m i l a r or t y p i c a l of what you see i n the community? 2. What i s i t about the s e r v i c e s t h a t you have suggested that would make c a r e g i v i n g e a s i e r f o r the f a m i l y ? 3. How does t h i s a f f e c t the c l i e n t ? 4. Did you focus on one person's need? Was t h i s the c l i e n t or the c a r e g i v e r ? 5. In you o p i n i o n , what are the s t r e n g t h s or p o s i t i v e aspects of the c a r e g i v i n g that f a m i l i e s provide? In these s c e n a r i o s , why are you ( i f you are) wanting to support the c a r e g i v e r ? Who b e n e f i t s ? 6. Did you base your o u t l i n e of s e r v i c e s on what you see as p r e s e n t l y a v a i l a b l e or on some i d e a l s i t u a t i o n ? Would there be any d i f f i c u l t y a r r a n g i n g any of the s e r v i c e s t h a t you have suggested? 7. How do you d e f i n e r e s p i t e ? What kind of s e r v i c e s does t h i s i n c l u d e ? 8. Why d i d you recommend or not recommend r e s p i t e f o r these cases? 9. In g e n e r a l terms, what do you see as the primary purpose of r e s p i t e ? What are the b e n e f i t s ? Who b e n e f i t s ? 10. Describe what you see as the extent of need f o r such s e r v i c e s i n the community. 11. What kinds of a c t u a l s e r v i c e s do you t h i n k would best meet t h i s need you have de s c r i b e d ? 12. Do you think t h a t the s e r v i c e s you have suggested i n the s c e n a r i o s are adequate? What are the gaps? 13. Do you have any recommendations or thoughts about how the present system of r e s p i t e s e r v i c e s should f u n c t i o n or maybe be changed? 

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