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The well-being of older wives caring for husbands with Alzheimer’s disease Brown, Pamela Lee 1986

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THE WELL-BEING OF OLDER WIVES CARING FOR HUSBANDS WITH ALZHEIMER'S DISEASE By PAMELA LEE BROWN B.N., The University of Manitoba, 1980 THESIS SUBMITTED IN PARTIAL FULFILLMENT < THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (School of Nursing) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA September 1986 <g) Pamela Lee Brown, 1986 In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y available for reference and study. I further agree that permission for extensive copying of t h i s thesis for scholarly purposes may be granted by the head of my department or by h i s or her representatives. I t i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. ^ _. ScAool of A/qrstA*; Department of ^ ° The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 i i A b s t r a c t T h i s study was conducted to document the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands diagnosed with Alzheimer's Disease . Data were c o l l e c t e d by means of a s e l f - a d m i n i s t e r e d q u e s t i o n n a i r e designed to e l i c i t i n f o r m a t i o n r e g a r d i n g the c a r e g i v e r s ' p h y s i c a l h e a l t h , mental h e a l t h , p a r t i c i p a t i o n i n and s a t i s f a c t i o n with p r e f e r r e d a c t i v i t i e s , f i n a n c i a l resources and h e a l t h behaviours. Analyses of the data r e v e a l e d that the wives were e x p e r i e n c i n g d e f i c i t s i n a l l domains of t h e i r w e l l - b e i n g with the exception of f i n a n c i a l r e s o u r c e s . These d e f i c i t s were s i g n i f i c a n t l y more profound than the d e f i c i t s experienced by a sample r e p r e s e n t a t i v e of the g e n e r a l p o p u l a t i o n and a sample of a more heterogenous group of c a r e g i v e r s . Normative data on the w e l l - b e i n g of o l d e r women f a i l to account, i n f u l l , f o r the d i s c r e p a n c i e s between the study wives and the 2 comparison samples. These f i n d i n g s support the t h e s i s that the c a r e g i v i n g experience per se i s r e s p o n s i b l e , i n p a r t , f o r the d e f i c i t s i n the wives' w e l l - b e i n g . They a l s o demonstrate that o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease are a group of c a r e g i v e r s p a r t i c u l a r l y at r i s k to experience d e f i c i t s i n t h e i r w e l l - b e i n g as a r e s u l t of c a r e g i v i n g . The c o n c l u s i o n s support the need f o r nurses to view c a r e g i v e r s as p a t i e n t s , in t h e i r own r i g h t , who r e q u i r e r e g u l a r and frequent assessment and i n t e r v e n t i o n . Community programs must i n c o r p o r a t e the needs of c a r e g i v e r s i n t o t h e i r mandate to ensure that t h e i r w e l l - b e i n g i s not at r i s k due to the i i i demands or burden of c a r e g i v i n g . Other i m p l i c a t i o n s and suggestions f o r f u r t h e r study are d i s c u s s e d . i v Table of Contents A b s t r a c t i i L i s t of Tables . v i i Acknowledgements v i i i CHAPTER ONE I n t r o d u c t i o n 1 Background to the Problem 1 Problem . 6 Purpose 6 S i g n i f i c a n c e 7 D e f i n i t i o n of Terms 8 Assumptions 9 L i m i t a t i o n s 9 CHAPTER TWO L i t e r a t u r e Review.. 10 Overview 10 Well-Being of Older M a r r i e d Women... 11 Women as C a r e g i v e r s of the C h r o n i c a l l y 111 E l d e r l y 16 Well-Being of Wives C a r i n g f o r C h r o n i c a l l y 111 Husbands 19 Well-Being of C a r e g i v e r s of the Demented E l d e r l y 21 Summary 46 V CHAPTER THREE Research Design 48 Overview 48 Q u e s t i o n n a i r e 48 S c o r i n g of the Q u e s t i o n n a i r e 50 V a l i d i t y and R e l i a b i l i t y 51 S e l e c t i o n C r i t e r i a 52 Sample 52 Data C o l l e c t i o n 53 Su b j e c t s ' Rights 55 Data A n a l y s i s 55 CHAPTER FOUR P r e s e n t a t i o n and D i s c u s s i o n of F i n d i n g s . 57 Overview 57 Demographic Information 57 P h y s i c a l Health 59 Mental H e a l t h 65 H e a l t h Behaviours.... 73 P a r t i c i p a t i o n In and S a t i s f a c t i o n with P r e f e r r e d A c t i v i t i e s 75 F i n a n c i a l Resources 80 Summary • 83 CHAPTER FIVE Summary, Co n c l u s i o n s , I m p l i c a t i o n s f o r Future Research 85 Summary of the Study 85 v i C o n c l u s i o n s 88 I m p l i c a t i o n s 88 Recommendations f o r Future Research 94 References 97 Appendixes A. C a r e g i v e r Q u e s t i o n n a i r e 104 B. S c o r i n g of Q u e s t i o n n a i r e 113 C. L e t t e r of Information and Consent 115 v i i L i s t of Tables Table 1 C a r e g i v e r P h y s i c a l Health 60 2 Comparison of Means on P h y s i c a l H e a l t h Measures: Study Sample, General P o p u l a t i o n and Comparison C a r e g i v e r Samples 61 3 Mental H e a l t h I n d i c a t o r s 66 4 P s y c h i a t r i c S t r e s s Symptoms 67 5 Comparison of Means on P s y c h i a t r i c S t r e s s Symptoms: Study Sample, General P o p u l a t i o n and Comparison Caregiver Sample 69 6 Measures of S u b j e c t i v e Weil-Being 70 7 Comparison of Means on S u b j e c t i v e W e i l -Being Measures: Study Sample, General P o p u l a t i o n and Comparison C a r e g i v e r Sample 73 8 Health Behaviours 74 9 P a r t i c i p a t i o n In and S a t i s f a c t i o n with P r e f e r r e d A c t i v i t i e s 76 10 Comparison of Means on S o c i a l A c t i v i t i e s Measures: Study Sample, General P o p u l a t i o n and Comparison Caregiver Sample 79 11 F i n a n c i a l I n d i c a t o r s 81 12 Comparison of Means on F i n a n c i a l I n d i c a t o r s : Study Sample, General P o p u l a t i o n and Comparison C a r e g i v e r Sample 83 v i i i ACKNOWLEDGEMENTS Si n c e r e thanks are due to my committee members, P r o f e s s o r s M a r i l y n Willman and M a r i l y n Dewis, f o r t h e i r i n d e f a t i g a b l e e f f o r t . I am e s p e c i a l l y g r a t e f u l to Vinay Kanetkar f o r h i s i n v a l u a b l e a s s i s t a n c e with the s t a t i s t i c a l a n a l y s e s . I a p p r e c i a t e the a s s i s t a n c e and enthusiasm from v a r i o u s i n d i v i d u a l s and groups who a s s i s t e d me to l o c a t e the su b j e c t s f o r t h i s study. Nor c o u l d I have c a r r i e d out t h i s study without the p a r t i c i p a t i o n of the c a r e g i v i n g wives who took the time to share t h e i r e xperiences with me. F i n a l l y , I would l i k e to thank my partner Gord for h i s cont i n u e d f a i t h i n my a b i l i t i e s . 1 CHAPTER ONE I n t r o d u c t i o n Background to the Problem Care of the c h r o n i c a l l y i l l e l d e r l y has become an i s s u e of i n c r e a s i n g concern f o r h e a l t h care p r a c t i t i o n e r s , planners and f a m i l y members (Polanksy, 1982). The foremost f a c t o r s c o n t r i b u t i n g to t h i s i s s u e are the h i g h prevalence of c h r o n i c i l l n e s s i n the e l d e r l y , coupled with the s h i f t o c c u r r i n g i n s o c i e t y ' s age s t r u c t u r e ( J e t t e & Branch, 1981). Canada has witnessed an unprecedented growth r a t e of the p o p u l a t i o n of persons i n the 65 years and o l d e r age group. From 1971 to 1981, the number of aged i n c r e a s e d by 35%, whereas the t o t a l p o p u l a t i o n grew by only 13% ( N a t i o n a l C o u n c i l on Welfare, 1984). Current estimates p l a c e the e l d e r l y at 10% of the p o p u l a t i o n ( N a t i o n a l C o u n c i l on Welfare, 1984), and i t i s estimated t h a t , by the year 2001, the p r o p o r t i o n of e l d e r l y w i l l i n c r e a s e to between 11% and 13% ( S t a t i s t i c s Canada, 1976). Concomitant with t h i s s o c i a l t r e n d i s an i n c r e a s e i n c h r o n i c i l l n e s s e s ( J e t t e & Branch, 1981). Persons i n the 55 to 64 year o l d age group are 6 times more l i k e l y to s u f f e r from a c h r o n i c i l l n e s s than are people who f a l l w i t h i n the 18 to 44 year o l d age group. Persons over 65 years of age are 5 times more l i k e l y to be f u n c t i o n a l l y d i s a b l e d than the general p o p u l a t i o n (Polanksy, 1982). One d e v a s t a t i n g c h r o n i c i l l n e s s which occurs i n the aging 2 p o p u l a t i o n i s d e t e r i o r a t i o n i n mental f u n c t i o n i n g or dementia (Kay, 1972). The most common of the dementing d i s o r d e r s i s Alzheimer's Disease, b e l i e v e d to account f o r 50% to 70% of those suspected of s u f f e r i n g from dementia (Watson & Seiden, 1984). Alzheimer's Disease a f f e c t s an estimated 100,000 to 300,000 Canadians ( H i r s t , 1981), and i t i s estimated t h a t , by the year 2015, as many as one m i l l i o n people i n Canada may be s u f f e r i n g from the d i s e a s e (Watson & Seiden, 1984). No d e f i n i t i v e cause or cure f o r Alzheimer's Disease has been e s t a b l i s h e d , but i t i s confirmed that i t i s a c h r o n i c , p r o g r e s s i v e , and degenerative n e u r o l o g i c a l d i s e a s e (Raskind & S t o r r i e , 1980). S t r u c t u r a l b r a i n damage r e s u l t s i n p r o g r e s s i v e d e t e r i o r a t i o n of memory, i n t e l l e c t , p e r s o n a l i t y , and s e l f - c a r e a b i l i t y over a p r o t r a c t e d course ranging from two to ten years (Barnes, Raskind, Scott & Murphy, 1981). Thus, the management of Alzheimer's Disease i s and w i l l c o n tinue to be a major h e a l t h concern given that there i s no cure, the i n c i d e n c e i n c r e a s e s with age, and t h a t the over-65 p o p u l a t i o n i s the l a r g e s t growing segment of our p o p u l a t i o n (Brody, 1982; H i r s c h f e l d , 1983). Family c a r e g i v i n g , p e r m i t t i n g the person with Alzheimer's Disease to remain i n the community, i s both a s o c i a l l y and f i n a n c i a l l y a t t r a c t i v e form of management (George, 1983). S o c i a l l y , remaining i n the community may o p t i m i z e the l e v e l of i n d i v i d u a l f u n c t i o n i n g ( E i s d o r f e r & Cohen, 1981) and a v o i d the negative e f f e c t s of i n s t i t u t i o n a l i z a t i o n . For example, s t u d i e s r e p o r t e s p e c i a l l y high r a t e s of m o r t a l i t y amongst 3 those persons with Alzheimer's Disease moved to an i n s t i t u t i o n (Blenker, 1967), and i n d i c a t e that Alzheimer's p a t i e n t s show g r e a t e r impairment i n u n f a m i l i a r s e t t i n g s ( P l u t s k y , 1974). Economically, community care may be c o s t -e f f e c t i v e i n that i t reduces h e a l t h care c o s t s a s s o c i a t e d with i n s t i t u t i o n a l i z a t i o n (Nardone, 1980). Most persons with Alzheimer's Disease do not r e s i d e i n i n s t i t u t i o n a l s e t t i n g s but r e s i d e at home, cared f o r by f a m i l y members u n t i l l a t e i n t h e i r i l l n e s s (Brody, 1974; Sanford, 1975; Bergmann, F o s t e r , J u s t i c e & Matthews, 1978). F a m i l i e s i n Canada are thought to be p r o v i d i n g care to approximately 90% of a l l those with Alzheimer's Disease (Alzheimer's S o c i e t y of Canada, 1984). Review of r e s e a r c h r e l a t e d to management of persons with dementia i n the community c l e a r l y documents that the o l d e r female spouse c a r i n g f o r a husband with dementia i s the most common s c e n a r i o (Sanford, 1975; Isaacs, 1979; Z a r i t , Reever & Bach-Peterson, 1980; Robertson & R e i s n e r , 1983; Chenoweth & Spencer, 1983). These r e s u l t s were expected i n t h a t p r e v i o u s l i t e r a t u r e c o n s i s t e n t l y r e p o r t s that women have t r a d i t i o n a l l y been the c a r e g i v e r s i n s o c i e t y and that the c a r e g i v e r i n an e l d e r l y couple i s most l i k e l y to be the female spouse (Brody, 1974; Shanas, 1979). T h i s may w e l l be due to women's longer l i f e expectancy and tendency to be younger than t h e i r husbands, r e s u l t i n g i n a s i t u a t i o n where women are l e s s l i k e l y to have a spouse to care f o r them (Shanas, 1979). However, even when a spouse i s present, aged women with dementia are more l i k e l y to be i n s t i t u t i o n a l i z e d than aged 4 men. T h i s phenomenon i s e x p l a i n e d by the f a c t that the s o c i a l i z a t i o n of women versus men i n t o the c a r e g i v i n g r o l e equips men l e s s w e l l to look a f t e r a s i c k spouse and run the home than does that of a woman s i m i l a r l y p l a c e d (Grad de Al a r c o n , Sainsbury & C o s t a i n , 1975). Although community care of persons with Alzhe'imer's Disease i s s o c i a l l y and eco n o m i c a l l y a p p e a l i n g , many l i t e r a t u r e sources d i s c u s s the "burden" of f a m i l y c a r e g i v i n g . C a r e g i v e r burden r e f e r s to the v a r i e t y of e f f e c t s that the fa m i l y c a r e g i v e r experiences as a r e s u l t of the demands of c a r e g i v i n g (Poulshock & Deimling, 1984). The most f r e q u e n t l y mentioned problems l i e i n the domains of the c a r e g i v e r ' s p h y s i c a l h e a l t h , p s y c h o l o g i c a l w e l l - b e i n g , s o c i a l l i f e and fi n a n c e s ( Z a r i t , 1982). C l i n i c a l and anect o d a l r e p o r t s r e f e r to c a r e g i v e r s e x p e r i e n c i n g such problems as f a t i g u e , d e p r e s s i o n , g u i l t , back i n j u r i e s , h y p e r t e n s i o n , f i n a n c i a l h a rdship, and s o c i a l i s o l a t i o n (Vorgna, 1979; Moryc, 1980; S a f f o r d , 1980; E i s d o r f e r £ Cohen, 1981; Mace & Rabins, 1981; Crossman, London & Barry, 1981; Colman, Sommers & Leonard, 1982; Hayter, 1982; Kapust, 1982; Sheldon, 1982; Ware & Cooper, 1982; Levine et a l . , 1984; C u t l e r , 1985; Mann, 1985; Wasow, 1985; Woods, Niederehe & Fruge, 1985) Very few s t u d i e s have s y s t e m a t i c a l l y examined the impact c a r e g i v i n g has on the p h y s i c a l , p s y c h o l o g i c a l , s o c i a l , and f i n a n c i a l w e l l - b e i n g of f a m i l y c a r e g i v e r s (Polansky, 1982). A v a i l a b l e r e s e a r c h has focussed on a v a r i e t y of c a r e g i v e r s c a r i n g f o r persons with v a r y i n g d i s e a s e p r o c e s s e s . The 5 re s e a r c h methods and c o n c e p t u a l i z a t i o n s of w e l l - b e i n g used have been q u i t e d i s p a r a t e . The r e s u l t s suggest t h a t c a r e g i v i n g i s a s s o c i a t e d with lower p e r c e p t i o n s of w e l l - b e i n g (Fengler & Goodrich, 1979), decreased time f o r p r e f e r r e d s o c i a l a c t i v i t i e s and i n c r e a s e d need f o r s o c i a l support ( Z a r i t et a l . , 1980), hi g h l e v e l s of s u b j e c t i v e s t r e s s and low l i f e s a t i s f a c t i o n (Sexton, 1985), and p s y c h o l o g i c a l s t r e s s and l i m i t a t i o n of p r e f e r r e d a c t i v i t i e s (George, 1983;1984). Thus, while i t i s undoubtedly true that i n p u b l i c expenditure terms home care i s l e s s c o s t l y , review of the l i t e r a t u r e and re s e a r c h i n d i c a t e s that the c o s t s to the c a r e g i v e r s i n terms of t h e i r w e l l - b e i n g have not been f u l l y a ddresssed (Rimmer, 1983). Taken together, l i t t l e i s known about the w e l l - b e i n g of c a r e g i v e r s i n general (George, 1983), and much l e s s i s known about the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease. Furthermore, c r o s s - s t u d y comparisons may not be the most a p p r o p r i a t e data base f o r understanding the w e l l - b e i n g of t h i s p a r t i c u l a r group of c a r e g i v e r s f o r the f o l l o w i n g three reasons: (1) B e n o l i e l (1983) suggests that r e s e a r c h on the e f f e c t s of i l l n e s s on the fa m i l y be d i s e a s e -s p e c i f i c due to the unique nature of i n d i v i d u a l d i s e a s e processes which may pose s p e c i a l problems not encountered by other c a r e g i v e r s ; (2) Cantor (1983) argues that the c l o s e r the bond between f a m i l y members the more s t r e s s f u l i s the c a r e g i v i n g r o l e , suggesting the need to study unique c a r e g i v i n g r e l a t i o n s h i p s w i t h i n the f a m i l y ; and (3) Fengler 6 & G o o d r i c h (1979) s t a t e the o l d e r c a r e g i v i n g w i f e i s i n the s i t u a t i o n where the demands of c a r e g i v i n g a r e b e i n g superimposed on the s t r e s s e s the o l d e r woman i s a l r e a d y e x p e r i e n c i n g as she a t t e m p t s t o cope w i t h her own a g i n g p r o c e s s and i t s r e l a t e d changes. Problem Concomitant w i t h the r e c o g n i t i o n of the p r i m a r y c a r e g i v i n g r o l e p l a y e d by f a m i l i e s of p e r s o n s w i t h A l z h e i m e r ' s D i s e a s e has been the i n c r e a s e d awareness t h a t c a r e g i v i n g can p l a c e the c a r e g i v e r a t i n c r e a s e d r i s k f o r p h y s i c a l h e a l t h problems, p s y c h o l o g i c a l d i f f i c u l t i e s , r e s t r i c t i o n s i n s o c i a l a c t i v i t i e s , and f i n a n c i a l s t r a i n (George, 1983). D e s p i t e the numerous c l i n i c a l r e f e r e n c e s t o such problems, the e x t a n t r e s e a r c h base documenting the impact of t h e s e problems on the w e l l - b e i n g of the c a r e g i v e r has been l i m i t e d . O l d e r female spouses c a r i n g f o r husbands w i t h A l z h e i m e r ' s D i s e a s e c o n s t i t u t e a l a r g e p r o p o r t i o n of the f a m i l y c a r e g i v i n g p o p u l a t i o n p r o v i d i n g c a r e i n the home. The n a t u r e of t h e wife-husband r e l a t i o n s h i p , the p a r t i c u l a r s of managing A l z h e i m e r ' s D i s e a s e v e r s u s o t h e r i l l n e s s e s , and the l i k e l i h o o d t h a t the o l d e r spouse i s e x p e r i e n c i n g a g e - r e l a t e d changes suggest t h a t the w e l l - b e i n g of t h i s unique group of c a r e g i v e r s be s y s t e m a t i c a l l y s t u d i e d . Purpose The purpose of t h i s s t u d y i s t o document the w e l l - b e i n g of o l d e r w i v e s c a r i n g f o r husbands w i t h A l z h e i m e r ' s D i s e a s e . 7 S i g n i f icance The s i g n i f i c a n c e of t h i s r e s e a r c h f o r the n u r s i n g p r o f e s s i o n i s that the f i n d i n g s may h e l p to improve the q u a l i t y of l i f e f o r the c a r e g i v e r as w e l l as the q u a l i t y of care the person with Alzheimer's Disease r e c e i v e s . Because of n u r s i n g ' s concern with f a m i l y - c e n t r e d c a r e , i t i s important that the w e l l - b e i n g of i n d i v i d u a l f a m i l y c a r e g i v e r s be documented to ensure t h e i r r i g h t s and needs are c o n s i d e r e d (Colman et a l . , 1982). Knowledge of c a r e g i v i n g wives' w e l l - b e i n g w i l l h e l p to p r o v i d e d i r e c t i o n f o r the support and s e r v i c e s needed to prevent the harmful consequences of c a r e g i v i n g . T h i s may h e l p to ensure that the c a r e g i v e r i s not s a c r i f i c i n g her own w e l l - b e i n g and enjoyment of a reasonable q u a l i t y of l i f e (Sussman, 1979). In a d d i t i o n , documentation of c a r e g i v e r w e l l - b e i n g may p r o v i d e h e l p f u l i n s i g h t i n t o the q u a l i t y of care which can a c t u a l l y be p r o v i d e d by the c a r e g i v i n g w i f e . T h i s , i n t u r n , may i n d i c a t e the nature of the a d j u n c t i v e s e r v i c e s r e q u i r e d to ensure the person with Alzheimer's Disease i s r e c e i v i n g q u a l i t y care i n the home. F i n a l l y , the a b i l i t y of the spouse to continue to care f o r the husband with Alzheimer's Disease p l a y s a major r o l e i n whether the p a t i e n t i s i n s t i t u t i o n a l i z e d (Isaacs, 1979). T h e r e f o r e , a p p r o p r i a t e support of c a r e g i v i n g wives w i l l h e l p to ensure that they are a b l e to continue to care f o r t h e i r husbands i n t h e i r homes, the environment in which the person with Alzheimer's Disease i s l i k e l y to have the 8 best q u a l i t y of l i f e . Thus, documentation of c a r e g i v i n g wives' w e l l - b e i n g p r o v i d e s d i r e c t i o n f o r the support systems they r e q u i r e to continue e f f e c t i v e l y i n the c a r e g i v i n g r o l e . T h i s may make p o s s i b l e b e t t e r care f o r the husband with Alzheimer's Disease by p r e v e n t i n g premature i n s t i t u t i o n a l i z a t i o n and a l l e v i a t i n g e l d e r abuse r e s u l t i n g from overwork and f r u s t r a t i o n (Colman et a l . , 1982). A program of home care f o r a person with Alzheimer's Disease can most e f f e c t i v e l y be i n s t i t u t e d i f one c o n s i d e r s not only the a f f l i c t e d person, but a l s o the p h y s i c a l , p s y c h o l o g i c a l , s o c i a l , and f i n a n c i a l s t r a i n s on the c a r e g i v e r (Treas, 1977). D e f i n i t i o n of Terms Alzheimer's Disease A c h r o n i c i l l n e s s c h a r a c t e r i z e d by c h r o n i c , p r o g r e s s i v e and degenerative n e u r o l o g i c a l changes (Raskind & S t o r r i e , 1980). S t r u c t u r a l damage r e s u l t s i n p r o g r e s s i v e d e t e r i o r a t i o n of memory, i n t e l l e c t , p e r s o n a l i t y , and s e l f - c a r e a b i l i t y over a p r o t r a c t e d course ranging from two to ten years (Barnes et a l . , 1981). Older wives Women over 55 years of age who are married to and r e s i d i n g with husbands who have Alzheimer's d i s e a s e . Husbands with Alzheimer's Disease Men who have Alzheimer's d i s e a s e and are married to and r e s i d i n g with wives over 55 years of age, who are c a r i n g f o r them. 9 C a r i n g f o r P a t t e r n of a s s i s t a n c e i n which the wife i s p r i n c i p a l l y r e s p o n s i b l e f o r p r o v i d i n g or c o o r d i n a t i n g resources r e q u i r e d by the person with dementia such as, shopping, f i n a n c e s , p e r s o n a l c a r e . Well-being A m u l t i - d i m e n s i o n a l concept r e f e r r i n g to the c a r e g i v e r ' s p h y s i c a l h e a l t h , mental h e a l t h , s o c i a l a c t i v i t i e s , and f i n a n c i a l resources as measured by m u l t i p l e i n d i c a t o r s (George 1983). Assumptions The r e s e a r c h e r approached the proposed study with the assumptions that the w e l l - b e i n g of the c a r e g i v i n g wife can be a s c e r t a i n e d by the s e l e c t e d q u e s t i o n n a i r e and that the s u b j e c t s w i l l complete the q u e s t i o n n a i r e i n an honest and t r u t h f u l manner. L i m i t a t i o n s The l i m i t a t i o n s of t h i s study r e l a t e to the f o l l o w i n g : 1. The s u b j e c t s may not be r e p r e s e n t a t i v e of the t h e o r e t i c a l p o p u l a t i o n of wives c a r i n g f o r husbands with Alzheimer's D i s e a s e . 2. The study documents the c u r r e n t s t a t u s of c a r e g i v e r w e l l - b e i n g and i s by no means a r e t r o s p e c t i v e or l o n g i t u d i n a l study. 3. The nature of the s e r v i c e s r e c e i v e d from the r e f e r r i n g source may i n f l u e n c e the s u b j e c t s ' w e l l - b e i n g . 10 CHAPTER TWO L i t e r a t u r e Review Overview The w e l l - b e i n g of f a m i l y c a r e g i v e r s r e s i d i n g with r e l a t i v e s diagnosed with Alzheimer's Disease has r e c e i v e d l i t t l e s c r u t i n y i n the l i t e r a t u r e . No s t u d i e s c o u l d be found which documented the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease. Furthermore, the impact of c a r e g i v i n g on c a r e g i v e r w e l l - b e i n g has been o p e r a t i o n a l l y d e f i n e d and s t u d i e d i n numerous ways. Consequently, broad parameters were necessary to review the r e l e v a n t l i t e r a t u r e . The l i t e r a t u r e review i s d i v i d e d i n t o four s e c t i o n s . In the f i r s t s e c t i o n , i n f o r m a t i o n summarized from v a r i o u s Canadian h e a l t h surveys and p e r t i n e n t l i t e r a t u r e on the w e l l -being of o l d e r married women i s presented to provide a normative b a s i s f o r comparison. Secondly, a l a r g e body of p r o f e s s i o n a l l i t e r a t u r e has developed re g a r d i n g women as c a r e g i v e r s of the c h r o n i c a l l y i l l e l d e r l y . L i t e r a t u r e which a p p l i e s to the s p e c i f i c s i t u a t i o n of the o l d e r wife c a r i n g f o r a c h r o n i c a l l y i l l husband w i l l be addressed here. Two s t u d i e s which examined the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with c h r o n i c i l l n e s s are reviewed i n the t h i r d s e c t i o n . The f o u r t h s e c t i o n i s d i v i d e d i n t o 2 p a r t s . F i r s t , a v a r i e t y of sources i n the p r o f e s s i o n a l l i t e r a t u r e d e s c r i b e the experience of c a r i n g f o r an e l d e r l y , demented r e l a t i v e . 11 Themes from l i t e r a t u r e which focussed on the p a r t i c u l a r experiences of spouses are addressed here. In the second p a r t , s e v e r a l s t u d i e s which pr o v i d e i n f o r m a t i o n as to the w e l l - b e i n g of f a m i l y c a r e g i v e r s of an e l d e r l y , demented r e l a t i v e are reviewed. Well-Being of Older M a r r i e d Women The l i f e expectancy of Canadian women i s 7.5 years longer than that of males ( L a p i e r r e , 1984). As a r e s u l t of t h e i r g r e a t e r l o n g e v i t y , however, women are su b j e c t to more c h r o n i c d i s e a s e s and d i s a b i l i t i e s before death ( L a p i e r r e , 1984; Lewis, 1985). W i l k i n s and Adams demonstrated that a Canadian woman's d i s a b i l i t y - f r e e l i f e i s only 3.6 years longer than a male's ( L a p i e r r e , 1984). According to the 1978-79 Canada Health Survey, approximately 86% of e l d e r l y people rep o r t e d at l e a s t one h e a l t h problem ( M i n i s t e r of Supply and S e r v i c e s , 1983). The most frequent s e l f - r e p o r t e d c h r o n i c c o n d i t i o n s and impairments i n o l d e r women were a r t h r i t i s , h y p e r t e n s i v e d i s e a s e , and hea r i n g and v i s u a l impairments. More s p e c i f i c a l l y , 47% of women aged 65 to 74 years of age re p o r t e d they had a r t h r i t i s or rheumatism, 32% re p o r t e d h y p e r t e n s i o n , and 5% re p o r t e d c a r d i a c d i s e a s e . There are s i g n i f i c a n t d i s c r e p a n c i e s between the two sexes i n the prevalence of d i s e a s e s . For example, a r t h r i t i s a f f e c t s 23% of women beyond 45 as compared to 14% of men. Ost e o p o r o s i s i s four times as common i n women as men 12 (Faulkner, 1980). The in c i d e n c e of hype r t e n s i o n i s n e a r l y twice as hig h among women aged 75 years and ol d e r (43%) than among t h e i r male c o u n t e r p a r t s (22%) ( M i n i s t e r of Supply and S e r v i c e s , 1983). R e s u l t s of the 1978-79 Canada He a l t h Survey r e v e a l e d that the p r o p o r t i o n of persons whose major a c t i v i t y was p a r t i a l l y or t o t a l l y l i m i t e d was estimated at n e a r l y four times g r e a t e r f o r those aged 65 years and o l d e r ( M i n i s t e r of Supply and S e r v i c e s , 1983). For example, 34% of the e l d e r l y female p o p u l a t i o n had been p a r t i a l l y or t o t a l l y l i m i t e d at some time i n the prev i o u s 12 months as opposed to 9% of the po p u l a t i o n between the ages of 15 and 64 ye a r s . Although the same p r o p o r t i o n of e l d e r l y men and women rep o r t e d l i m i t e d a c t i v i t y , e l d e r l y women versus t h e i r male c o u n t e r p a r t s were more l i k e l y to report d i s a b i l i t y days. Women, on average, repo r t e d 39 days of r e s t r i c t e d a c t i v i t y of which 15 days were spent i n bed while men rep o r t e d 30 days of which 11 were spent i n bed. These sex d i f f e r e n c e s were even more s u b s t a n t i a l among those over 75 years of age. In g e n e r a l , the e l d e r l y u t i l i z e h e a l t h s e v i c e s more f r e q u e n t l y than does the general p o p u l a t i o n . Sex d i f f e r e n c e s i n u t i l i z a t i o n of h e a l t h s e r v i c e s among the e l d e r l y are not s i g n i f i c a n t (Dulude, 1978). In terms of s p e c i f i c u t i l i z a t i o n p a t t e r n s , r e s u l t s of the 1978-79 Canada H e a l t h Survey i n d i c a t e d that most of Canada's e l d e r l y see a p h y s i c i a n a n n u a l l y . Approximately 18% of o l d e r women had not c o n s u l t e d a p h y s i c i a n a n n u a l l y w i t h i n the preceding 12 months while 1 3 approximately 25% and 55% had c o n s u l t e d a p h y s i c i a n once or twice or more than three times, r e s p e c t i v e l y ( M i n i s t e r of Supply and S e r v i c e s , 1978). As women age, they i n c r e a s i n g l y become a p o p u l a t i o n that i s p s y c h o l o g i c a l l y at r i s k (Dulude, 1978; Faul k n e r , 1980; Polanksy, 1980; B u t l e r & Lewis, 1982; Po r c i n o , 1985). M u l t i p l e r o l e changes, l o s s e s , and the double standard of aging are but three of the e x p l a n a t i o n s f o r t h i s phenomenon. On the b a s i s of data from a Health Opinion Survey, i t was found that a grea t e r p r o p o r t i o n of Canadian women than men experienced frequent symptoms of an x i e t y and depression ( L a p i e r r e , 1984). E p i d e m i o l o g i c a l s t u d i e s have a l s o demonstrated a higher i n c i d e n c e of depression amongst women than men ( F i t t i n g s and Rabins, 1985). In terms of the e l d e r l y , 41.5% of r e t i r e d males had a p o s i t i v e a f f e c t , 33.6% had a mixed a f f e c t , and 5.5 % had a negative a f f e c t . In c o n t r a s t , 35.8% of r e t i r e d women had a p o s i t i v e a f f e c t , 34.9 had a mixed a f f e c t , and 3.8 had a negative a f f e c t . Regardless of t h e i r age, women use more p r e s c r i p t i o n medications than men (Faulkner, 1980; Lewis, 1985; Porcino, 1985). F o r t y - f i v e percent of North American women take mood-r e g u l a t i n g drugs, i n c l u d i n g 72% of the p r e s c r i b e d a n t i -depressants and 70% of the minor t r a n q u i l i z e r s (Faulkner, 1980). I t i s estimated that 50% of p r e s c r i p t i o n drugs are p r e s c r i b e d to women over the age of 60 years (Porcino, 1985). As w e l l , i t i s f e l t that a l c o h o l i s m i s on the r i s e among o l d e r women (Por c i n o , 1985). 1 4 E l d e r l y Canadian women, those aged 65 and over, g e n e r a l l y have poor h e a l t h p r a c t i c e s . Only one out of every 20 women i n t h i s age group was c l a s s i f i e d by the 1978-79 Canada H e a l t h Survey as having a very a c t i v e l e v e l of p h y s i c a l a c t i v i t y ( M i n i s t e r of Supply and S e r v i c e s , 1983). T h i r t y - f i v e percent of women i n the 45 to 64 age range and 50% of women 65 years of age and o l d e r had a l e v e l of a c t i v i t y c l a s s i f i e d as sedentary or moderately i n a c t i v e . Women were more l i k e l y than t h e i r male c o u n t e r p a r t s to be c l a s s i f i e d as i n a c t i v e , e s p e c i a l l y i n the upper age groups. Ac c o r d i n g to the 1970-72 N u t r i t i o n Canada N a t i o n a l Survey, the e l d e r l y p o p u l a t i o n had a higher percentage of inadequate or l e s s than adequate i n t a k e f o r most s e l e c t e d n u t r i e n t s than d i d the younger age groups ( M i n i s t e r of Supply and S e r v i c e s , 1983). Senior women were more l i k e l y to have inadequate intake than t h e i r male c o u n t e r p a r t s , p a r t i c u l a r l y i n terms of p r o t e i n , i r o n , c alcium, r i b o f l a v i n , and n i a c i n . In terms of s o c i a l a c t i v i t i e s , 80% of the e l d e r l y spent time v i s i t i n g or t a l k i n g with f r i e n d s d u r i n g the week of the February 1978 Survey on S e l e c t e d L e i s u r e Time A c t i v i t i e s ( M i n i s t e r of Supply and S e r v i c e s , 1983). The e l d e r l y were only s l i g h t l y l e s s l i k e l y to t a l k with f r i e n d s / r e l a t i v e s or engage i n h o b b i e s / c r a f t s than the younger g e n e r a t i o n s . One out of every 10 e l d e r l y Canadians d i d unpaid v o l u n t e e r work du r i n g the p e r i o d of the study. The incomes of Canada's e l d e r l y tend to be d i s p r o p o r t i o n a t e l y c o n c e n t r a t e d at the lower end of the 1 5 income s c a l e ( M i n i s t e r of Supply and S e r v i c e s , 1983). In 1981, one-half of the f a m i l i e s with members aged 65 years and o l d e r had incomes l e s s than $15,000. In terms of p r o p e r t y , Canadian s e n i o r s were as l i k e l y to own a home as younger Canadians. S i x t y - f i v e percent of household heads 65 years of age and o l d e r owned t h e i r own home and n e a r l y 6 out of 10 owned the home mortgage-free. E l d e r l y married women are viewed as being i n a v u l n e r a b l e f i n a n c i a l p o s i t i o n (Dulude, 1978; Polansky, 1980; Equal O p p o r t u n i t i e s Commission, 1982; Rimmer, 1983; Walker, 1983). Dulude (1978) found t h a t , other than the o l d age pension they r e c e i v e d , at l e a s t o n e - t h i r d of o l d e r married women i n 1975 had no p e r s o n a l income at a l l . The manner in which the Canada Pension Plan i s c a l c u l a t e d i s viewed as ensuring that female pensioners w i l l r e c e i v e c o n s i d e r a b l y lower b e n e f i t s (Dulude, 1978; Equal O p p o r t u n i t i e s Commission, 1982). Furthermore, married women are much l e s s l i k e l y to be r e c e i v i n g a pension from a former employer (Dulude, 1978; Equal O p p o r t u n i t i e s Commission, 1982). For example, Dulude (1978) found t h a t , i n 1975, only 29% of a l l Canadian female members of the labour f o r c e p a r t i c i p a t e d i n p r i v a t e pension p l a n s . Thus, i t appears that when o l d e r women's husbands d i e many of them w i l l have to e x i s t on the i n h e r i t e d p r o p e r t y . 16 Women as C a r e g i v e r s of the  C h r o n i c a l l y 111 E l d e r l y Women take on the burden of c a r e g i v i n g due to female s o c i a l i z a t i o n p a t t e r n s and the a s s o c i a t e d s o c i e t a l e x p e c t a t i o n s . F i r s t l y , women have t r a d i t i o n a l l y been presumed to be r e s p o n s i b l e f o r the w e l l - b e i n g of t h e i r f a m i l y members. U n t i l r e c e n t l y , the care and w e l l - b e i n g of the fa m i l y was the only occupation of a l a r g e percentage of women in North America (Sommers, 1985). Secondly, women are s u s c e p t i b l e to the "compassion t r a p . " F e m i n i s t s s t a t e t h a t , by v i r t u e of t h e i r s o c i a l i z a t i o n , "the n u r t u r i n g s k i l l s and s e n s i t i v i t y to human i n t e r a c t i o n s that make women as a sex more responsive to pain and s u f f e r i n g a l s o make them more w i l l i n g to take on arduous and o f t e n unrewarded p e r s o n a l d u t i e s " (Sommers, 1985, p. 10). T h i r d l y , community care p o l i c i e s are viewed as euphemisms f o r p o o r l y f i n a n c e d systems which p l a c e the burden of care on i n d i v i d u a l f a m i l y members, p a r t i c u l a r l y women (Equal O p p o r t u n i t i e s Commission, 1982; O l i v e r , 1983; Polanksy, 1982; Walker, 1983). Thus, the often-quoted p o l i c y of community ca r e , to enhance ra t h e r than r e p l a c e f a m i l y support, i s viewed as ensuring the continuance of the p a t t e r n wherein the prime 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 i s c a r r i e d by women. T h i s , i n t u r n , s u s t a i n s the sexual d i v i s i o n of labour with regard to fa m i l y c a r e g i v i n g and c o n s t r a i n s the demands on home support s e r v i c e s . Given t h i s s t a t e of a f f a i r s , i t i s f e l t that wives have l i t t l e c h o i c e about t a k i n g on the c a r i n g commitment. There 1 7 i s a u n i v e r s a l e x p e c t a t i o n from the medical and nur s i n g p r o f e s s i o n s , s o c i a l s e r v i c e s s t a f f , the dependent, and other f a m i l y members that wives w i l l take on the r e s p o n s i b i l i t y ( O l i v e r , 1983; Polanksy, 1982). C o n s i d e r a t i o n i s seldom given to the wife's own s t a t e of h e a l t h , other demands on her time and energy, her employment, or the s t a t e of the marriag'e ( O l i v e r , 1983). The sexual d i v i s i o n of labour i n f a m i l y c a r e g i v i n g i s based on an u n d e r l y i n g assumption that women are more abl e than men to care f o r e l d e r l y i n f i r m dependents (Walker, 1983). Colman et a l . (1982) s t a t e t h a t , while h e a l t h care p r o f e s s i o n a l s w i l l h e lp a husband f i n d a s s i s t a n c e to care f o r an i n v a l i d w i f e , they w i l l send a man i n the same c o n d i t i o n home to h i s wife with such words as "I s n ' t he lucky to have a wonderful woman l i k e you to take care of him" (Colman et a l . , 1982, p. 2). I t i s f r e q u e n t l y r e p o r t e d that the presence of a wife i n the home means that a man w i l l be di s c h a r g e d home e a r l i e r from h o s p i t a l and r e c e i v e fewer a i d s , a d a p t a t i o n s to the home, and domestic s e r v i c e s ( O l i v e r , 1983; Polanksy, 1980; Polanksy, 1982). Polansky's study of c a r e g i v e r s of the c h r o n i c a l l y i l l r e v e a l e d that 64% of the male c a r e g i v e r s had the a s s i s t a n c e of some type of formal h e a l t h care s e r v i c e s i n c o n t r a s t t o onl y 42% of the female c a r e g i v e r s . An even grea t e r d i f f e r e n t i a l between the sexes was found i n r e l a t i o n to the amounts of home h e a l t h care s e r v i c e s the two sexes r e c e i v e d ; 47% of the male c a r e g i v e r s had s e r v i c e four to seven days per week whereas only 13% of the female c a r e g i v e r s 18 had s e r v i c e s to that extent (Polanksy, 1982). Feminist authors have been most concerned about the impact c a r e g i v i n g has on the f i n a n c i a l s i t u a t i o n of female c a r e g i v e r s (Equal O p p o r t u n i t i e s Commission, 1982; Rimmer, 1983; Walker, 1983). A 1976 survey of the e l d e r l y at home found t h a t , among women between the ages of 40 and 59, the need to give up employment because they had to care f o r an i n f i r m r e l a t i v e came second only to poor h e a l t h as a reason f o r r e t i r i n g (Equal O p p o r t u n i t i e s Commission, 1982). While men are given s e r v i c e s i n order to continue employment, women are expected to q u i t t h e i r jobs (Polanksy, 1982). The disadvantaged f i n a n c i a l p o s i t i o n of e l d e r l y married women may be exacerbated by the husband's i l l n e s s (Polansky, 1980; Equal O p p o r t u n i t i e s Commission, 1982; Rimmer, 1983; Walker, 1983). The c o s t s of c a r e g i v i n g i n c u r r e d through expenses such as s u p p l i e s and homemaker a s s i s t a n c e may be compounded by a l o s s of the husband's income i f he was g a i n f u l l y employed when h i s i l l n e s s s t r u c k . The s i t u a t i o n of the female f a m i l y c a r e g i v e r has been a p t l y summarized by Golodetz et a l . (1969) as f o l l o w s : She i s not t r a i n e d f o r her job, a p r i o r i . She may have l i t t l e c h o i c e about doing the job. She belongs to no union or g u i l d , works no f i x e d maximum number of hours. She l a c k s formal compensation, job advancement and even the p o s s i b i l i t y of being f i r e d . She has no job m o b i l i t y . In her work s i t u a t i o n she bears a heavy emotional l o a d , but has no c o l l e a g u e s or s u p e r v i s o r or 19 e d u c a t i o n to h e l p her handle t h i s . Her own l i f e and i t s needs compete c o n s t a n t l y with her work requirements. She may be l i m i t e d i n her performance by her own a i l m e n t s . . . (p. 390) Well-Being of Wives Car i n g f o r  C h r o n i c a l l y 111 Husbands As p a r t of a l a r g e r study to examine the s p e c i a l needs and problems of e l d e r l y wives c a r i n g f o r d i s a b l e d husbands, Fengler and Goodrich (1979) s t u d i e d the impact of a husband's d i s a b i l i t y on the wife's morale and l i f e s t y l e . The sample was 15 males and t h e i r spouses r e c r u i t e d from a v o l u n t e e r workshop s e t t i n g f o r o l d e r handicapped males. The average age of the wives was 67 years while the husbands' average age was 73 y e a r s . The predominant d i s a b i l i t i e s of the husbands were c a r d i a c - r e l a t e d . The men and t h e i r wives were ad m i n i s t e r e d l i f e s a t i s f a c t i o n s c a l e s and a s e r i e s of h e a l t h i n d i c a t o r s at three separate two-month i n t e r v a l s . A f o u r t h i n t e r v i e w was completed one year l a t e r . O v e r a l l , the r e s u l t s i n d i c a t e d that the c a r e g i v i n g wives r e p o r t e d low l e v e l s of l i f e s a t i s f a c t i o n compared to a v a i l a b l e n a t i o n a l norms. The authors concluded t h a t , as the wives were r a r e l y d i s a b l e d themselves, t h e i r lower morale must be due, at l e a s t i n p a r t , to the husband's c o n d i t i o n . The authors attempted to i n v e s t i g a t e f a c t o r s which c o n t r i b u t e d to the wives' r e l a t i v e lack of l i f e s a t i s f a c t i o n . R e s u l t s r e v e a l e d that low l i f e s a t i s f a c t i o n scores were 20 a s s o c i a t e d with decreased income, employment of the c a r e g i v e 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 f o r m u l t i p l e persons, lower intimacy with the husband, higher l e v e l s of s o c i a l i s o l a t i o n , and lower l e v e l s of a s s i s t a n c e from f r i e n d s and r e l a t i v e s . The authors concluded that wives of e l d e r l y d i s a b l e d men are "hidden p a t i e n t s . " Sexton and Munro (1985) s t u d i e d 46 wives whose husbands had a d i a g n o s i s of c h r o n i c o b s t r u c t i v e pulmonary d i s e a s e (COPD) and 30 whose husbands d i d not have a c h r o n i c i l l n e s s . The purpose of the study was to determine the impact of a husband's c h r o n i c i l l n e s s on the spouse's l i f e . Data were c o l l e c t e d by means of a mailed q u e s t i o n n a i r e which i n c l u d e d an I l l n e s s Impact form, a S u b j e c t i v e S t r e s s S c a l e and a L i f e S a t i s f a c t i o n Index. Data a n a l y s i s i n d i c a t e d that the wives of men with COPD r e p o r t e d higher s t r e s s and lower l i f e s a t i s f a c t i o n than d i d the c o n t r o l group. A l s o , wives of COPD men r a t e d t h e i r h e a l t h lower than d i d those i n the c o n t r o l group. Almost one-half (47.8%) of the COPD wives re p o r t e d that they had a r t h r i t i s , 28.3% had hy p e r t e n s i o n , 17.4% had c a t a r a c t s , and 10.9% had heart d i s e a s e . In c o n t r a s t , only 33.3% of the c o n t r o l group r e p o r t e d they had a r t h r i t i s and 13.3% had h y p e r t e n s i o n . Twenty-two of the COPD wives r e p o r t e d poor s l e e p . Almost o n e - t h i r d (30.4%) of the COPD wives r e p o r t e d they had given up s o c i a l a c t i v i t i e s versus 13.3% of the c o n t r o l group who i n d i c a t e d that they were i n v o l v e d i n fewer b u s i n e s s - r e l a t e d a c t i v i t e s . Sexton and Munro suggested the need f o r i n v e s t i g a t i o n of the 21 p o s s i b i l i t y t h a t decreased l i f e s a t i s f a c t i o n and i n c r e a s e d s t r e s s c o n t r i b u t e to i l l n e s s i n the w i f e . Well-Being of C a r e g i v e r s of the Demented E l d e r l y T h i s s e c t i o n i s d i v i d e d i n t o 2 p a r t s . F i r s t l y , themes d e r i v e d from a n a l y s i s and s y n t h e s i s of l i t e r a t u r e d e s c r i b i n g the experience of c a r i n g f o r a an e l d e r l y , demented r e l a t i v e w i l l be presented. A review of s e v e r a l s t u d i e s of f a m i l y c a r e g i v e r s of the demented e l d e r l y f o l l o w s . Ongoing s o c i a l i s o l a t i o n i s a p e r v a s i v e theme i n the accounts of c a r e g i v e r s c a r i n g f o r a demented r e l a t i v e (Lezak, 1978; Vorgna, 1979; Morycz, 1980; Barnes et a l . , 1981; Colman et a l . , 1982; Levine et a l . , 1985; Wasow, 1985). In a c o u p l e s - o r i e n t e d s o c i e t y , when a mate i s too i l l to s o c i a l i z e , the spouse i s u s u a l l y cut o f f from previous p a t t e r n s of s o c i a l i z a t i o n (Wasow, 1985). The spouse l i v e s i n s o c i a l limbo as he/she does not have a par t n e r with whom to p a r t i c i p a t e i n s o c i a l a c t i v i t i e s nor i s he/she f r e e to get one (Lezak, 1978). S o c i a l mores o f t e n p r e c l u d e spouses from seeking other s o c i a l l y and e m o t i o n a l l y g r a t i f y i n g r e l a t i o n s h i p s . Having v i s i t o r s to the home of a dependent with Alzheimer's Disease and/or t a k i n g the dependent out of the home are d i f f i c u l t due to s e v e r a l f a c t o r s . These i n c l u d e the lengthy time r e q u i r e d to provide d a i l y c a r e , the f a c t t h a t the dependent's behaviours may embarrass f r i e n d s and r e l a t i v e s , and the f a c t t h at the dependent u s u a l l y does best 22 when simple r o u t i n e s are maintained (Lezak, 1978; Barnes et a l . , 1981). S o c i a l i s o l a t i o n can be exacerbated by f e e l i n g s of abandonment by the extended f a m i l y (Lezak, 1978; Wasow, 1985). The f a m i l y o f t e n does not a s s i s t the c a r e g i v e r to the extent expected. Adult c h i l d r e n view the c a r e g i v i n g mother as the p i v o t a l member of the f a m i l y who always "kept t h i n g s t o g e t h e r , " and expect her to continue i n t h i s r o l e d e s p i t e the change i n circumstances (Crossman et a l . , 1981). In a d d i t i o n , r e l a t i v e s can become c r i t i c a l of the c a r e g i v e r . Unaware of the d u t i e s and s a c r i f i c e s undertaken by the c a r e g i v e r , r e l a t i v e s may m i s p e r c e i v e the c a r e t a k e r as too p r o t e c t i v e , r e s t r i c t i v e , n e g l e c t f u l , or uncaring (Wasow, 1985). Not only i s there s o c i a l and f a m i l i a l i s o l a t i o n , but p e r s o n a l i s o l a t i o n as w e l l (Colman et a l . , 1982). The dependent's a b i l i t y to communicate v e r b a l l y and n o n - v e r b a l l y may be almost n o n - e x i s t e n t . The c a r e g i v e r ' s sexual and a f f e c t i o n a l needs may f r u s t r a t e d as many dependents no longer have the f u l l c a p a c i t y f o r empathy and i n t e r p e r s o n a l s e n s i t i v i t y . Furthermore, the sexual competency and demands of the dependent may not c o i n c i d e with those of the spouse (Lezak, 1978; Crossman et a l . , 1981). C a r e g i v e r s r e p o r t the all-consuming nature of c a r e g i v i n g and the r e s u l t a n t f e e l i n g s of being trapped and t i e d down (Lezak, 1978; Barnes et a l . , 1981; Collman et a l . , 1982; Wasow, 1985). I n d i v i d u a l i t y , p e r s o n a l i n t e r e s t s , and needs 23 become submerged by the needs of the dependent. Spouses d e s c r i b e t h e i r i d e n t i t y as t i e d to that of the dependent. The s i t u a t i o n was a p t l y d e s c r i b e d by one spouse as being that of a " p r i s o n e r of l o v e " (Barnes et a l . , 1981, p. 82). Others express being trapped by f e e l i n g s of g r a t i t u d e , fond memories, the marriage vow of " t i l death do us p a r t , " g u i l t , and fear of s o c i a l condemnation (Lezak, 1978). Role c o n f u s i o n and o v e r l o a d are experienced by c a r e g i v e r s as they assume the a d d i t i o n a l r o l e of c a r e g i v e r as w e l l as some or a l l of the dependent's p r e v i o u s r o l e s (Lezak, 1S78; Barnes et a l . , 1981; Crossman et a l . , 1981; Kapust, 1982). Older c a r e g i v e r s may have more d i f f i c u l t y coping with r o l e change because they have to a l t e r l o n g - e s t a b l i s h e d p a t t e r n s . In essence, many c a r e g i v e r s assume the r o l e of parent to t h e i r demented spouse (Wasow, 1985). One c a r e g i v e r d e s c r i b e d h i s experience as f o l l o w s : I married a peer, and now I l i v e with a r e t a r d e d c h i l d . I t i s so c o n f u s i n g : I wash her h a i r and cut her n a i l s and d r e s s her i n the mornings... and sometimes I make love to her at night (Wasow, 1985, p. 715). The c a r e g i v i n g r o l e may be p a r t i c u l a r l y d i f f i c u l t to adopt as s o c i e t y does not prepare a d u l t s f o r the kinds of problems with which they must d e a l when c o n f r o n t e d with a demented a d u l t ( S a f f o r d , 1980). As one c a r e g i v e r s t a t e d : I t ' s funny when you c o n s i d e r the e f f o r t they go to to g i v e new mothers advice as to how to handle new babies --no one t e l l s you how to handle i n c o n t i n e n t , s e n i l e 24 parents that spread faeces over the w a l l s and wander at n i g h t . Because i t ' s not t a l k e d about, you think you should know and then i n a d d i t i o n to a l l the other p r e s s u r e s , you f e e l g u i l t y because you can't cope with i t (Equal O p p o r t u n i t i e s Commission, 1982, p. 13). C a r e g i v e r s o f t e n wonder i f they are doing the r i g h t t h i n g and i f the dependents are not g e t t i n g b e t t e r because they, the c a r e g i v e r s , are not doing enough (Barnes et a l . , 1981; Hayter, 1982). F e e l i n g s of l o s s are experienced by c a r e g i v e r s i n the face of the dependent's steady i r r e v e r s i b l e d e t e r i o r a t i o n . (Lezak, 1978; Vorgna, 1979; Barnes et a l . , 1981; Kapust, 1982; C u t l e r , 1985; Levine et a l . , 1985; Wood et a l . , 1985). The dependent's p e r s o n a l i t y changes and l o s s of communicative a b i l i t y are o f t e n experienced by the c a r e g i v e r as a p a r t i a l death. The person they knew i s d e s c r i b e d as dying a l i t t l e at a time (Kapust, 1982). I t has been suggested that f a m i l i e s with a member diagnosed with Alzheimer's Disease progress through phases comparable to the mourning process ( C u t l e r , 1985). However, " s o c i e t y n e i t h e r r e c o g n i z e s the spouse's g r i e f nor p r o v i d e s the support and comfort that surrounds those bereaved by death" (Lezak, 1978, p.593). C a r e g i v e r s o f t e n experience a r e a c t i v e d e p r e s s i o n (Lezak, 1978; Barnes et a l . , 1981; Ware & Cooper, 1982; Powell, 1985). The d e p r e s s i o n can be a c h r o n i c p a l l over the c a r e g i v e r ' s l i f e or f l u c t u a t e with the dependent's ups and downs and the amount of p e r s o n a l freedom and s a t i s f a c t i o n the 25 c a r e g i v e r can o b t a i n . The symptoms of depression such as a n x i e t y a t t a c k s , d i s t u r b e d s l e e p , and l o s s of a p p e t i t e can le a d c a r e g i v e r s to f e e l they are "going c r a z y " (Lezak, 1978). The demands of the c a r e g i v i n g s i t u a t i o n can provoke f e e l i n g s of anger and f r u s t r a t i o n i n the c a r e g i v e r (Barnes et a l . , 1981; Crossman et a l . , 1981; Kapust, 1982; Sheldon, 1982; Hayter, 1982; Ware & Cooper, 1982; Mann, 1985; Powell, 1985; Wood et a l . , 1985; Wasow, 1985). These f e e l i n g s a l s o a r i s e when the dependent becomes d i s a b l e d around the reti r e m e n t y e a r s , thus robbing the spouse of h i s / h e r r e t i r e m e n t dreams f o r the "golden y e a r s " ( Crossman et a l . , 1981; Kapust, 1982). In a d d i t i o n , c a r e g i v e r s express f r u s t r a t i o n i n connection with the h e a l t h care system, p a r t i c u l a r l y i n terms of o b t a i n i n g a d i a g n o s i s (Barnes et a l . , 1981; Hayter, 1982; Wasow, 1985). By the time a d i a g n o s i s has become c l e a r , f a m i l i e s are o f t e n f r u s t r a t e d and d i s t r u s t f u l of the p h y s i c i a n and the system. Furthermore, c a r e g i v e r s r e p o r t t h a t , once a d i a g n o s i s has been made, p h y s i c i a n s tend to p u l l back, l e a v i n g the c a r e g i v e r with a sense of hopelessness and no g u i d e l i n e s f o r how to care f o r the dependent (Barnes et a l . , 1981; Hayter, 1982; Wasow, 1985). G u i l t and s e l f - r e p r o a c h f o l l o w the experience of negative emotions towards the dependent (Kapust, 1982; Mann, 1985; Powell, 1985; Wasow, 1985; Wood et a l . , 1985). Another source of g u i l t f o r the c a r e g i v e r i s the prospect of i n s t i t u t i o n a l i z a t i o n (Hayter, 1982; Kapust, 1982; Powell, 26 1982). Even when c a r e g i v e r s are t o t a l l y exhausted and have no other a l t e r n a t i v e , i n s t i t u t i o n a l i z a t i o n i s a s s o c i a t e d with f e e l i n g s of f a i l u r e as a c a r e g i v e r and g u i l t f o r abandoning the dependent. Dependents, f r u s t r a t e d and f r i g h t e n e d by t h e i r c o n d i t i o n , can make the c a r e g i v e r the focus of t h e i r b i t t e r n e s s and h u m i l i a t i o n (Lezak, 1978; C u t l e r , 1985). Episodes of b e l l i g e r e n c e and a g g r e s s i o n o u t s i d e the dependent's c o n t r o l can a l s o occur (Colman et a l . , 1982). Se v e r a l wives i n one c a r e g i v e r support group were f r i g h t e n e d of being harmed by t h e i r demented husbands. P h y s i c a l s t r u g g l e s o c c u r r e d to prevent the dependents from u s i n g guns, dangerous t o o l s , and hazardous equipment i n a p p r o p r i a t e l y (Barnes et a l . , 1981). The heavy p h y s i c a l and emotional demands of c a r e g i v i n g have been l i n k e d to c a r e g i v e r s ' r e p o r t s of exhaustion, heart a t t a c k s , and d i s i n t e g r a t i n g knee j o i n t s and back d i s c s (Crossman et a l . , 1981; E i s d o r f e r & Cohen, 1981; Colman et a l . , 1982; Moryz, 1982). Reports of exhaustion due to the dependents' day-night r e v e r s a l , and wandering and pacing are p a r t i c u l a r l y p r e v a l e n t . S e v e r a l c a r e g i v i n g wives r e p o r t e d that they t i e d themselves to t h e i r husbands at night so that they would awaken i f he arose (Barnes et a l . , 1981). T h i s constant v i g i l a n c e l e d to e xhaustion. The s t r e s s and anguish experienced by the o l d e r c a r e g i v e r may be superimposed on the c a r e g i v e r ' s own d i f f i c u l t a g e - r e l a t e d changes such as d e c l i n i n g h e a l t h and 27 deaths of r e l a t i v e s and/or f r i e n d s (Moryz, 1980; Woods et a l . , 1985). Older c a r e g i v e r s are l i k e l y to have t h e i r own i n f i r m i t y , given that over 85% of Canadians 65 years of age and o l d e r r e p o r t at l e a s t one h e a l t h - r e l a t e d problem (Ableson, Paddon & Strohmenger, 1983). Long-term and harmful h a b i t s such as lack of e x e r c i s e , poor d i e t , and d r u g / a l c o h o l abuse may exacerbate the negative e f f e c t s of c a r e g i v i n g (Barrow & Smith, 1979). C a r e g i v e r s may a l s o face f i n a n c i a l burdens (Crossman et a l . , 1981; Colman et a l . , 1982; C u t l e r , 1985; Wasow, 1985). When i l l n e s s s t r i k e s the husband before the normal retirement age of 65, many women l o s e t h e i r only means of support. Severe t r u n c a t i o n of the husband's pension b e n i f i t s may a l s o occur. A f f o r d a b l e and adequate community and home support s e r v i c e s may be l a c k i n g . S e v e r a l s t u d i e s which provide i n f o r m a t i o n as to the w e l l - b e i n g of f a m i l y c a r e g i v e r s of an e l d e r l y , demented r e l a t i v e w i l l now be reviewed i n c h r o n o l o g i c a l o r d e r . In an attempt to understand the e f f e c t home care has on the people l i v i n g with an e l d e r l y dependent, Grad and Sainsbury (1963) i n t e r v i e w e d the c l o s e s t r e l a t i v e s of 410 menta l l y i l l e l d e r l y dependents who had been r e f e r r e d to a community or h o s p i t a l - b a s e d s e r v i c e . The dependents' diagnoses c l a s s i f i e d as mental i l l n e s s were o r g a n i c , p s y c h o t i c , n e u r o t i c and/or p e r s o n a l i t y d i s o r d e r s . F u r t h e r demographic i n f o r m a t i o n r e g a r d i n g the dependents and r e l a t i v e s was not p r o v i d e d . 28 An i n t e r v i e w e r r a t e d the e f f e c t of the dependent's i l l n e s s on f a m i l y income and employment, s o c i a l and l e i s u r e a c t i v i t i e s of the f a m i l y , domestic r o u t i n e , c h i l d r e n i n the home, h e a l t h of household members, and r e l a t i o n s with neighbours. Each item was r a t e d on a t h r e e - p o i n t s c a l e as "not a f f e c t e d , " " a f f e c t e d , " or " s e v e r e l y a f f e c t e d . " The c r i t e r i a by which the i n t e r v i e w e r made these d e c i s i o n s were not d i s c u s s e d . More than one-half (60%) of the r e l a t i v e s r e p o r t e d e x c e s s i v e a n x i e t y . O n e - f i f t h a t t r i b u t e d n e u r o t i c symptoms such as insomnia and headaches to t h e i r concern r e g a r d i n g the dependent. The s o c i a l and l e i s u r e a c t i v i t i e s of o n e - t h i r d of the f a m i l i e s had been r e s t r i c t e d and one-quarter had t h e i r income reduced by at l e a s t 10%. The i n c i d e n c e of these problems was higher f o r those r e l a t i v e s who had c h i l d r e n and when the c a r e g i v i n g r e l a t i v e was a spouse. Sanford (1975) i n t e r v i e w e d 50 supporters of dependents who had been admitted to the g e r i a t r i c u n i t s of two h o s p i t a l s due to supporter i n a b i l i t y to cope with the p a t i e n t at home. Supporter was d e f i n e d as the person p r i n c i p a l l y i n v o l v e d with the dependent. Of the s u p p o r t e r s , 22 were spouses (16 female and 6 male), 23 were o f f s p r i n g (19 female and 4 male), 2 were s i s t e r s , 2 were u n r e l a t e d , and one was a daughter-in-law. Over one-half of the supporters were over 65 years of age. The purpose of the i n t e r v i e w was to i d e n t i f y the problems encountered by the supporters and to d e l i n e a t e which problems would have to be a m e l i o r a t e d before they would 29 accept the dependents back i n the home. Supporters i d e n t i f i e d problems which f e l l i n t o three groups: (1) dependents' behaviour p a t t e r n s , (2) t h e i r own l i m i t a t i o n s , and (3) environmental and s o c i a l c o n d i t i o n s . The m a j o r i t y of the problems c i t e d were i n the category of the dependents' behaviour p a t t e r n s . Problems a r i s i n g from the s u p p o r t e r s ' l i m i t a t i o n s accounted f o r only 16% of a l l problems i d e n t i f i e d . Among these, the most common problem (52% of the cases) was a n x i e t y and/or de p r e s s i o n a t t r i b u t e d to l o o k i n g a f t e r the dependent. Eleven (22%) of the supporters f e l t they were not p h y s i c a l l y strong enough to cope with the demands of c a r e g i v i n g such as l i f t i n g the dependent. Problems a s s o c i a t e d with the environmental and s o c i a l context made up only 12% of a l l the problems i d e n t i f i e d . Of these, r e s t r i c t i o n of s o c i a l l i f e was i d e n t i f i e d i n 42% of the cases and 28% f e l t unable to leave the dependent f o r more than an hour. Sanford r e p o r t e d t h a t the t o l e r a n c e of problems i n these two groups was good. Sanford concluded t h a t , s i n c e so few of the problems encountered by the e l d e r l y c a r e g i v e r s were r e l a t e d to t h e i r own l i m i t a t i o n s , the suggestion that the e l d e r l y c a r e g i v e r i s f r a i l may be erroneous. Wheatley (1980) assessed the problems encountered by a small sample of c a r e g i v e r s r e s i d i n g with an e l d e r l y demented person. Beyond s t a t i n g that the r e s e a r c h method c o n s i s t e d of a s t a n d a r d i z e d i n t e r v i e w , a focussed i n t e r v i e w , and 30 p a r t i c i p a n t o b s e r v a t i o n , the author d i d not pr o v i d e any f u r t h e r i n f o r m a t i o n r e g a r d i n g the r e s e a r c h method. The author r e p o r t e d that a l l c a r e g i v e r s i n the sample under re t i r e m e n t age had v a r y i n g problems r e g a r d i n g employment, but, i n g e n e r a l , f i n a n c e s were not a source of d i f f i c u l t y . A l l c a r e g i v e r s were r e p o r t e d as having experienced c o n s i d e r a b l e r e s t r i c t i o n r e g a r d i n g s o c i a l a c t i v i t i e s . Emotional d i s t r e s s , nervous s t r a i n , a n x i e t y , i r r i t a b i l i t y , impatience, and f r u s t r a t i o n were repo r t e d by a l l s u b j e c t s . P h y s i c a l symptoms such as headaches, high blood p r e s s u r e , weight l o s s , b l a c k o u t s , and stomach pains were a l s o i d e n t i f i e d . Z a r i t et a l . , (1980) examined how 29 c a r e g i v e r s ' f e e l i n g s of burden were a f f e c t e d by the impairments manifested by dependents with dementia and by v a r i o u s a s p e c t s of the c a r e g i v i n g s i t u a t i o n . Eighteen of the c a r e g i v e r s were spouses and 11 were daughters. A l l but 4 of the c a r e g i v e r s were female. C a r e g i v e r s ranged i n age from 42 to 82 years with an average age of 65. The dependents c o n s i s t e d of 16 males and 13 females with an average age of 76 y e a r s . The authors expected that f e e l i n g s of burden would be r e l a t e d to the extent of behaviour impairment manifested by the dependent. Contrary to t h i s e x p e c t a t i o n , the r e s u l t s r e v e a l e d t h a t none of the dependents' behaviour v a r i a b l e s were c o r r e l a t e d with the l e v e l of burden. Of the remaining measures, only the frequency of f a m i l y v i s i t s was s i g n i f i c a n t l y r e l a t e d to the l e v e l of burden. C a r e g i v e r s of 31 dependents who r e c e i v e d more v i s i t s from c h i l d r e n , g r a n d c h i l d r e n , and s i b l i n g s r e p o r t e d l e s s burden. There were no s i g n i f i c a n t d i f f e r e n c e s between husbands and wives on the v a r i o u s v a r i a b l e s . Using an e x p l o r a t o r y - d e s c r i p t i v e approach, Marcus and Jaeger (1982) s t u d i e d the exp e r i e n c e s of 47 e l d e r l y c a r e g i v e r s c a r i n g f o r an e l d e r l y i n f i r m f a m i l y member. Though the diagnoses of the dependents were not pr o v i d e d , the study i s reviewed here as i t i s a Canadian study and pr o v i d e s i n t e r e s t i n g i n f o r m a t i o n about female c a r e g i v e r s . Seventy-one per cent of the c a r e g i v e r s were spouses with an unexpectedly l a r g e number (32%) being husbands. The m a j o r i t y (57%) of the c a r e g i v e r s were 75 years of age and o l d e r . The study method c o n s i s t e d of an i n t e r v i e w based on an ethnographic approach i n which the s u b j e c t s were asked q u e s t i o n s about c a r e g i v i n g and t h e i r f e e l i n g s about t h e i r s i t u a t i o n . Secondly, the c a r e g i v e r s were asked to r a t e t h e i r own h e a l t h and the dependent's h e a l t h . Questions were a l s o asked about the the c a r e g i v e r ' s and dependent's r e l a t i o n s h i p . The f i n a l p a r t of the i n t e r v i e w enquired as to whether the c a r e g i v e r s had knowledge o f, u t i l i z e d and/or d e s i r e d home support s e r v i c e s . A Burden Interview developed by Z a r i t (1982) was then completed. Content a n a l y s e s of s u b j e c t s ' d e s c r i p t i o n s of the d a i l y r o u t i n e of c a r e g i v i n g r e v e a l e d t h a t almost 50% of the c a r e g i v e r s mentioned no a c t i v i t i e s r e l a t e d to s e l f - c a r e or t h e i r own l e i s u r e . The burden sc o r e s f o r these c a r e g i v e r s 32 was s l i g h t l y higher than f o r those c a r e g i v e r s who i n d i c a t e d they d i d p a r t i c i p a t e i n s e l f - c a r e or l e i s u r e a c t i v i t i e s . Four themes emerged as answers to the q u e s t i o n "What makes a day e a s y / d i f f i c u l t ? " C a r e g i v e r s r e p o r t e d that being r e l i e v e d from the r o u t i n e of c a r e g i v i n g made the s i t u a t i o n e a s i e r to t o l e r a t e , v i s i t o r s eased the burden, c a r e g i v i n g was e a s i e r when the dependent was not i l l , and being t i e d to the house was d i f f i c u l t to t o l e r a t e . In response to a q u e s t i o n on the aspect of c a r e g i v i n g that gave the most s a t i s f a c t i o n or p l e a s u r e , 21 c a r e g i v e r s r e p o r t e d coping, g e t t i n g r e s u l t s , and r e c o g n i t i o n . When questioned as to t h e i r concerns about the f u t u r e , 44% of the c a r e g i v e r s s t a t e d they l i v e d from day to day and had no thoughts of the f u t u r e . T r y i n g not to t h i n k about the f u t u r e was mentioned by more than one-half of the female c a r e g i v e r s versus one-quarter of the male c a r e g i v e r s . F i f t y - s e v e n per cent of the c a r e g i v e r s r a t e d t h e i r h e a l t h as good and 15% r a t e d t h e i r h e a l t h as poor. Ne i t h e r sex, age, nor burden scores were s i g n i f i c a n t l y r e l a t e d to t h i s s e l f - r a t i n g . A n a l y s i s of c a r e g i v e r s ' r a t i n g s of the dependents' h e a l t h s t a t u s r e v e a l e d that three times as many female as male c a r e g i v e r s r a t e d the dependents' h e a l t h as poor. The authors questioned whether t h i s may have been due to the female c a r e g i v e r s c a r i n g f o r r e l a t i v e s who were more impaired or i f the women were more r e a l i s t i c or p e s s i m i s t i c i n t h e i r assessment than were the male c a r e g i v e r s . U n l i k e Z a r i t et a l . , (1980), these authors found that the poorer the 33 dependent's h e a l t h was r a t e d , the higher the c a r e g i v e r ' s burden score. In examining the amount of h e l p r e c e i v e d by the c a r e g i v e r s , i t was found that a l l but two s u b j e c t s r e c e i v e d a s s i s t a n c e , with male and female c a r e g i v e r s r e c e i v i n g p r o p o r t i o n a t e l y the same amount. C a r e g i v e r s over 75 years of age and c a r e g i v e r s with higher burden scores r e c e i v e d more h e l p . More than one-half of the sample r e p o r t e d having few v i s i t o r s . Female c a r e g i v e r s and c a r e g i v e r s under 75 years of age r e p o r t e d r e c e i v i n g more v i s i t o r s . S i m i l a r to the f i n d i n g s i n the study conducted by Z a r i t et a l . , (1980), c a r e g i v e r s with h i g h burden scores r e p o r t e d fewer s o c i a l v i s i t s . The scores on the Z a r i t Burden Interview r e v e a l e d that 63% of the female c a r e g i v e r s as compared to 31% of the male c a r e g i v e r s had h i g h burden s c o r e s . Twice as many female as male c a r e g i v e r s a l s o r e p o r t e d that c a r e g i v i n g had a negative impact on t h e i r l i v e s . Thus, the authors concluded that c a r e g i v i n g appeared to be more burdensome f o r o l d e r female than f o r o l d e r male c a r e g i v e r s . S u r p r i s i n g l y , o n e - t h i r d of the c a r e g i v e r s r e p o r t e d that c a r e g i v i n g had no impact on t h e i r l i f e . The authors suggested that t h i s may have been due to d e n i a l , p h i l o s o p h i c a l a t t i t u d e , or acceptance of the s i t u a t i o n . In another Canadian study, P r i n g l e (1982) i n v e s t i g a t e d whether the same f a c t o r s i n f l u e n c e d the p s y c h o l o g i c a l w e l l -being of e l d e r l y dependents and t h e i r f a m i l y c a r e g i v e r s . The 34 s u b j e c t s were 140 p a i r s of e l d e r l y dependents and c a r e g i v e r s who r e s i d e d t o g e t h e r . The m a j o r i t y of the c a r e g i v e r s were spouses (71 persons) or a d u l t o f f s p r i n g (69 p e r s o n s ) . The spouses were, on average, 76 years and the a d u l t o f f s p r i n g 53 years of age. The dependents ranged i n age from 65 to 101 with an average age of 80. The dependent v a r i a b l e was p s y c h o l o g i c a l w e l l - b e i n g which was on a continuum ranging from l i f e s a t i s f a c t i o n to d e p r e s s i o n . The independent v a r i a b l e s were q u a l i t y of the r e l a t i o n s h i p and kin r e l a t i o n s h i p between the dependent and the c a r e g i v e r , p e r c e p t i o n of h e a l t h s t a t u s , adequacy of f i n a n c i a l r e s o u r c e s , d u r a t i o n of c a r e g i v i n g , and amount of a s s i s t a n c e from other f a m i l y members. The r e s u l t s i n d i c a t e d that the c a r e g i v e r s were moderately s a t i s f i e d with l i f e , but a m i l d l e v e l of depression was present. The 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 was p o s i t i v e l y c o r r e l a t e d with t h e i r p e r c e p t i o n of t h e i r h e a l t h , the adequacy of t h e i r f i n a n c e s , and the q u a l i t y of the i n t e r p e r s o n a l r e l a t i o n s h i p between the c a r e g i v e r and the dependent. Information r e g a r d i n g the c a r e g i v e r s ' p e r c e p t i o n s of t h e i r h e a l t h s t a t u s was not p r o v i d e d . The m a j o r i t y of the c a r e g i v e r s p e r c e i v e d t h a t t h e i r income was s u f f i c i e n t . The c a r e g i v e r s c o n s i s t e n t l y d e s c r i b e d t h e i r r e l a t i o n s h i p with the dependent i n more negative terms than d i d the dependents. Rabins et a l . (1982) in t e r v i e w e d the primary c a r e g i v e r s of 55 dependents diagnosed with i r r e v e r s i b l e dementia to 35 determine i t s impact on the f a m i l y . The dependents were e i t h e r i n p a t i e n t s or o u t p a t i e n t s of a h o s p i t a l p s y c h i a t r i c s e r v i c e . T h i r t y - n i n e of the dependents were women and 16 were men. F i f t y - o n e per cent of the women were widowed versus 6% of the men. Dependents diagnosed with Alzheimer's Disease accounted f o r 60% of the cases. Almost one-half (45%) of the dependents l i v e d with a spouse or spouse and c h i l d . The remainder l i v e d i n other s e t t i n g s such as a nur s i n g home. A q u e s t i o n n a i r e examined dependent behaviours as w e l l as problems the f a m i l y c a r e g i v e r might be e x p e r i e n c i n g as a r e s u l t of c a r i n g f o r the dependent. F o r t y - e i g h t (87%) rep o r t e d c h r o n i c f a t i g u e , anger, and de p r e s s i o n while l o s s of f r i e n d s and hobbies and no time f o r s e l f were c i t e d by 30 (55%) of the respondents. Role changes c r e a t e d by assuming r e s p o n s i b i l i t i e s that had been the dependents were r e p o r t e d by 16 (29%) of the respondents as a source of d i s t r e s s . F e e l i n g s of g u i l t were expressed by 14 (25%) respondents. The primary c a r e g i v e r s of 26 former i n p a t i e n t s of a Canadian g e r i a t r i c assessment u n i t , diagnosed with dementia, were i n t e r v i e w e d by Robertson & Reisner (1982). A l l but one of the c a r e g i v e r s were female. A spouse was the c a r e g i v e r i n 11 cases and a daughter i n e i g h t c a ses. The average age of the supporters was 60 ye a r s . Of the 26 dependents, 14 were male and 12 were female and the average age was 78 years. Using a study method s i m i l a r to that of Sanford (1975), c a r e g i v e r s were asked to i d e n t i f y management problems they 36 had experienced as a r e s u l t of c a r i n g f o r t h e i r r e l a t i v e . Where such problems were present, the c a r e g i v e r s were then asked to s t a t e i f they c o u l d cope with these problems without p e r s o n a l s t r e s s or i n t e r f e r e n c e with t h e i r d a i l y l i f e . Knowledge of, u t i l i z a t i o n of, and expressed need f o r home support s e r v i c e s was a l s o assessed. Seventeen (65%) of the supporters r e p o r t e d t h a t t h e i r own h e a l t h was good or e x c e l l e n t and nine (35%) r e p o r t e d t h e i r h e a l t h as poor or f a i r . Being t i e d down was the most p r e v a l e n t problem noted and was r e p o r t e d by 20 (80%) of the s u p p o r t e r s . I n t e r f e r e n c e with s o c i a l l i f e was noted by 15 (50%) of the s u p p o r t e r s . As Sanford (1975) found, these problems were w e l l t o l e r a t e d by the c a r e g i v e r s . However, d e s p i t e the c a r e g i v e r s ' r e p o r t e d a b i l i t y to t o l e r a t e these problems, the authors p o i n t out that 50% of the dependents had been admitted to extended care f a c i l i t i e s w i t h i n 18 months of commencement of the study. S e v e r a l reasons can be o f f e r e d f o r t h i s phenomenon: (1) the c a r e g i v e r s ' a b i l i t i e s to t o l e r a t e these problems was q u i c k l y eroded, (2) the c a r e g i v e r s d i d not t r u t h f u l l y i n d i c a t e t h e i r a b i l i t y to t o l e r a t e the problems, or (3) the manner i n which the r e s e a r c h e r s measured the c a r e g i v e r s ' t o l e r a n c e of the problems was i n a c c u r r a t e . Approximately one-half of the c a r e g i v e r s knew of a v a i l a b l e community r e l i e f s e r v i c e s such as day care and h o l i d a y and weekend r e l i e f . D e s p i t e t h i s , more than one-half of the supporters expressed that there was a l a c k of s e r v i c e s 37 of t h i s nature and very few were p r e s e n t l y u t i l i z i n g the e x i s t i n g s e r v i c e s . The authors suggested that t h i s may have been due to the s e r v i c e s not being a c c e s s i b l e or not meeting the p e r c e i v e d needs of the dependents and t h e i r s u p p o r t e r s . In g e n e r a l , over 50% of the c a r e g i v e r s had knowledge of home care s e r v i c e s such as meals-on-wheels, p u b l i c h e a l t h n u r s i n g , and home-maker s e r v i c e s . Just over one-half of the c a r e g i v e r s expressed a need f o r these s e r v i c e s . D i f f e r e n c e s between the expressed need f o r and use of the s e r v i c e s was s m a l l . Of p a r t i c u l a r i n t e r e s t i s t h a t , d e s p i t e 92% of the c a r e g i v e r s being aware of p u b l i c h e a l t h n u r s i n g , only one c a r e g i v e r r e p o r t e d using the s e r v i c e s of a p u b l i c h e a l t h nurse and one other expressed the need f o r t h i s s e r v i c e . The authors suggested t h a t , i n t h i s sample, p u b l i c h e a l t h n u r s i n g was not viewed by the c a r e g i v e r s as a s e r v i c e they needed and that t h i s may represent a missed o p p o r t u n i t y f o r s u r v e i l l a n c e and p r e v e n t i v e i n t e r v e n t i o n . Chenoweth and Spencer (1983) s t u d i e d the s u b j e c t i v e experiences of 289 f a m i l i e s randomly s e l e c t e d from the m a i l i n g l i s t of an Alzheimer's Disease support group. Over one-half (55%) of the respondents were spouses of the dependent with 41% being wives. The sample ranged i n age from the l a t e 20s to e a r l y 80s, with 55% of the respondents being 50 to 60 years of age. Data were c o l l e c t e d by means of an open-ended q u e s t i o n n a i r e . D e t a i l s r e g a r d i n g the manner i n which the data were analyzed are l a c k i n g . The authors r e p o r t e d t h a t , 38 i n response to the q u e s t i o n , "What are the major problems you and your f a m i l y face i n c a r i n g f o r your r e l a t i v e ? " , many f a m i l i e s found the emotional and p h y s i c a l s t r a i n of care to be exhausting and f r u s t r a t i n g . S i x t y percent of the f a m i l i e s f e l t t h e i r r e l a t i v e ' s i l l n e s s had a f f e c t e d t h e i r r e l a t i o n s h i p s with other people. F a m i l i e s r e p o r t e d f r i e n d s no longer v i s i t e d . They f e l t i s o l a t e d and had to g i v e up jobs, v o l u n t e e r work, and l e i s u r e a c t i v i t i e s . Some f a m i l y members repor t e d t h e i r own a t t i t u d e s changed toward t h e i r f r i e n d s and that they themselves withdrew and became tense and anxious i n t h e i r f r i e n d s ' presence. Niederehe et a l . , (1983) compared the mental and p h y s i c a l h e a l t h of 34 f a m i l y c a r e g i v e r s of demented e l d e r l y r e l a t i v e s l i v i n g i n the community to that of 16 " p o t e n t i a l " c a r e g i v e r s of an o l d e r r e l a t i v e i n good h e a l t h . The f a m i l y c a r e g i v e r s of the demented r e l a t i v e s were r e c r u i t e d from a p s y c h i a t r i c s e t t i n g . These c a r e g i v e r s c o n s i s t e d of 18 spouses (predominantly male), and 16 female, younger g e n e r a t i o n c a r e g i v e r s . The c o n t r o l group c o n s i s t e d of 10 s e t s of spouses, a p a i r of e l d e r l y b r o t h e r s , and f i v e p a r e n t - c h i l d pa i r s. Among the c a r e g i v e r outcomes measured were p h y s i c a l and mental h e a l t h . P h y s i c a l h e a l t h was assessed by a p h y s i c a l h e a l t h q u e s t i o n n a i r e and mental h e a l t h was assessed by the Hopkins Symptom C h e c k l i s t (SCL-90), the CES Depression S c a l e , and the Hamilton Depression S c a l e . The r e s u l t s i n d i c a t e d that the c a r e g i v e r s showed somewhat more d e p r e s s i v e symptoms 39 than the c o n t r o l s , but u s u a l l y not enough to warrant a c l i n i c a l d i a g n o s i s of d e p r e s s i o n . C l o s e r examination of the subscales of the SCL-90 i n d i c a t e d c a r e g i v e r s ' g r e a t e r symptomatology tended to be i n areas of d e p r e s s i o n , a n x i e t y , a n g e r - h o s t i l i t y , and i n t e r p e r s o n a l s e n s i t i v i t y . The emotional s t r e s s of the c a r e g i v e r s was r e p o r t e d l y very apparent to the r e s e a r c h team and the authors q u e r i e d i f there was some d e n i a l of a f f e c t among them. I t was suggested t h i s c o u l d be due to the s i t u a t i o n a l demand f o r the c a r e g i v e r s to keep t h e i r r esources m o b i l i z e d f o r the d a i l y care of the r e l a t i v e and not to become absorbed with t h e i r own t r o u b l e d emotions. Comparison of the averages of the same-generation c a r e g i v e r s to younger g e n e r a t i o n c a r e g i v e r s w i t h i n the treatment group i n d i c a t e d the younger g e n e r a t i o n experienced a g r e a t e r s t r a i n . I t was hypothesized that the treatment group may have been l e s s i n c l i n e d to openly acknowledge e x p e r i e n c i n g s o c i a l and p s y c h i c d i s t r e s s . George (1983; 1984) s t u d i e d f a m i l y c a r e g i v e r s of persons with Alzheimer's Disease or a r e l a t e d d i s o r d e r to document the degree to which the w e l l - b e i n g of c a r e g i v e r s i s a f f e c t e d by t h e i r r e s p o n s i b i l i t i e s . Four dimensions of w e l l - b e i n g ( p h y s i c a l h e a l t h , mental h e a l t h , s a t i s f a c t i o n with and p a r t i c i p a t i o n i n s o c i a l a c t i v i t i e s , and f i n a n c i a l r e sources) which c o u l d be compared to average l e v e l s i n the general p o p u l a t i o n were assessed v i a a q u e s t i o n n a i r e . Normative data f o r a v a i l a b l e i n d i c a t o r s of w e l l - b e i n g 40 were compiled from m u l t i p l e surveys by George (1983). The primary data source was the Survey of the Well-Being of Older People i n C l e v e l a n d , Ohio (Comptroller General, 1977). The sample was 1609 C l e v e l a n d r e s i d e n t s 65 years of age and o l d e r . Other sources i n c l u d e d the H a r r i s Survey of the Myth and R e a l i t y of Aging (N=4254 a d u l t s age 18 and o l d e r ) ( H a r r i s , 1975), and the Duke U n i v e r s i t y Second L o n g i t u d i n a l Study (George, 1983), which had a sample of 502 a d u l t s between the ages of 45 and 71. Though George (1983) recog n i z e d the d i f f i c u l t i e s of comparisons of means a c r o s s s t u d i e s , i t was f e l t these comparison samples were of high q u a l i t y . The c a r e g i v e r sample was 501 i n f o r m a l c a r e g i v e r s of impaired o l d e r persons s u f f e r i n g Alzheimer's Disease or a r e l a t e d d i s o r d e r . The m a j o r i t y of the sample (71%) was female. The age range of the sample was 21 to 90 years with an average age of 57 y e a r s . The m a j o r i t y (59%) of the dependents were male. The dependents ranged i n age from 47 to 97 years with an average age of 70 y e a r s . The r e s u l t s i n d i c a t e d the c a r e g i v e r s experienced three times as many s t r e s s symptoms, were two to three times more l i k e l y to take p r e s c r i p t i o n p s y c h o a c t i v e drugs, p a r t i c i p a t e d i n fewer s o c i a l and r e c r e a t i o n a l a c t i v i t i e s , and were l e s s s a t i s f i e d with the q u a l i t y of t h e i r l e i s u r e a c t i v i t i e s than the g e n e r a l p o p u l a t i o n . S i g n i f i c a n t d i f f e r e n c e s between the male and female c a r e g i v e r s i n terms of mental h e a l t h and s o c i a l / r e c r e a t i o n a l 41 p a r t i c i p a t i o n were i d e n t i f i e d . Women c a r e g i v e r s were more l i k e l y than t h e i r male c o u n t e r p a r t s to take p s y c h o a c t i v e drugs, r e p o r t e d a l a r g e r number of s t r e s s symptoms, p a r t i c i p a t e d i n fewer s o c i a l and r e c r e a t i o n a l a c t i v i t i e s , and were l e s s s a t i s f i e d with the q u a l i t y of t h e i r l e i s u r e time. Spousel c a r e g i v e r s versus c h i l d c a r e g i v e r s had poorer h e a l t h , were more l i k e l y to take p s y c h o t r o p i c drugs, had more f i n a n c i a l problems, and spent l e s s time i n l e i s u r e a c t i v i t i e s . G i l h o o l y (1984) examined a v a r i e t y of f a c t o r s expected to i n f l u e n c e the p s y c h o l o g i c a l w e l l - b e i n g of f a m i l y c a r e g i v e r s c a r i n g f o r a r e l a t i v e with s e n i l e dementia. The sample was 20 c o - r e s i d e n t supporters (mean age of 62.9 years) and 17 non-resident supporters (mean age of 50.9). Nine of the c a r e g i v e r s were spouses, 19 were c h i l d r e n , 4 were s i s t e r s , and 8 were daughters-in-law. The dependents l i v i n g with the c o - r e s i d e n t s were d e s c r i b e d as being more impaired. The dependent v a r i a b l e , p s y c h o l o g i c a l w e l l - b e i n g , was assessed by the Kutner Morale Scale and the OARS M u l t i d i m e n s i o n a l F u n c t i o n a l Assessment Q u e s t i o n n a i r e Mental H e a l t h S c a l e . The independent v a r i a b l e s a s s e s s e d were the dependent's l e v e l of impairment, frequency of c o n t a c t with f a m i l y members and f r i e n d s , s a t i s f a c t i o n with h e l p from r e l a t i v e s , h e l p from support s e r v i c e s , and the q u a l i t y of the r e l a t i o n s h i p between supporter and dependent. The morale of the c a r e g i v e r s was r e p o r t e d as being at the lower end of the e i g h t - p o i n t Kutner Morale S c a l e . Scores on the mental h e a l t h s c a l e i n d i c a t e d t h a t , on average, 42 c a r e g i v e r s were i n good mental h e a l t h or only m i l d l y impaired. Sex of the dependent was the only c h a r a c t e r i s t i c s i g n i f i c a n t l y c o r r e l a t e d with supporter's morale and mental h e a l t h , with care of a female by e i t h e r a male or feamle c a r e g i v e r a s s o c i a t e d with higher morale and mental h e a l t h . In terms of supporter c h a r a c t e r i s t i c s , c o - r e s i d e n t supporters had s l i g h t l y lower morale and poorer mental h e a l t h than the non-resident s u p p o r t e r s . Sex of the supporters was found to be s i g n i f i c a n t l y c o r r e l a t e d to supporter's morale as males were found to have higher morale than females. In an addendum, the author s t a t e d that there were three p o s s i b l e e x p l a n a t i o n s f o r the males having higher morale than the female c a r e g i v e r s . F i r s t l y , the men i n the sample appeared l e s s e m o t i o n a l l y i n v o l v e d with the dependent than were the female s u p p o r t e r s . Secondly, the men were more w i l l i n g to leave the dependent unattended, meaning that they were l e s s s o c i a l l y i s o l a t e d . F i n a l l y , the author suggested t h a t i t may be that the males were l e s s w i l l i n g to admit d i s t r e s s than were the female c a r e g i v e r s . A n a l y s i s of v a r i a n c e r e v e a l e d no s i g n i f i c a n t a s s o c i a t i o n s between m a r i t a l s t a t u s and s u p p o r t e r s ' morale or mental h e a l t h . The c a r e g i v e r s were then c a t e g o r i z e d as spouses, c h i l d r e n , and other. T h i s measure of the " d i s t a n c e " i n the b l o o d / r o l e r e l a t i o n s h i p between supporter and dependent was found to be n e g a t i v e l y c o r r e l a t e d with morale and mental h e a l t h . The c l o s e r the b l o o d - r e l a t i o n s h i p , the lower the c a r e g i v e r ' s morale and mental h e a l t h . 43 C o r r e l a t i o n s between d u r a t i o n of c a r e - g i v i n g and morale and mental h e a l t h were both s i g n i f i c a n t , but not i n the expected d i r e c t i o n . The longer the supporter had been a c a r e g i v e r , the higher the supporter's morale and mental h e a l t h . The author suggested that t h i s may have been due to the c a r e g i v e r having had time to l e a r n to a d j u s t and cope. Frequency of c o n t a c t with f r i e n d s and r e l a t i v e s was not s i g n i f i c a n t l y c o r r e l a t e d with supporter morale or mental h e a l t h , whereas s a t i s f a c t i o n with h e l p r e c e i v e d from r e l a t i v e s was. C o r r e l a t i o n a l a n a l y s i s r e v e a l e d that home hel p s e r v i c e was c o r r e l a t e d with both high morale and mental h e a l t h . More frequent v i s i t s from a community h e a l t h nurse were a s s o c i a t e d only with higher morale. G i l h o o l y concluded from these f i n d i n g s that there i s marginal support f o r the assumption that the impact of c a r e g i v i n g i s n e g a t i v e . T h i s i s q u i t e c o n t r a r y to the f i n d i n g s of the m a j o r i t y of the s t u d i e s d i s c u s s e d i n t h i s review. Using a q u a l i t a t i v e approach, Larsen (1985) examined the experiences of s i x o l d e r wives c a r i n g f o r husbands with c h r o n i c c o n f u s i o n . The wives and the husbands ranged i n age from 68 to 85 years. The themes i n the c a r e g i v e r s ' accounts r e v o l v e d around three concerns: management of the husband's dependency, maintenance of the f a m i l y as a u n i t , and acceptance of the c a r e g i v i n g s i t u a t i o n . These w i l l be d i s c u s s e d i n t u r n . In terms of managing the husbands' dependency, Larsen 44 found that changes in the husbands' f u n c t i o n i n g and the r e s u l t a n t c a r e g i v i n g tasks had three major e f f e c t s on the wives: f a t i g u e , confinement, and s t r a i n . The husbands' i n c o n t i n e n c e and n o c t u r n a l r e s t l e s s n e s s were the major f a c t o r s c o n t r i b u t i n g to f a t i g u e . Two of the wives r e l i e d r e g u l a r l y on s l e e p i n g medications to a i d them to s l e e p while two others used them l e s s f r e q u e n t l y . Confinement was expressed as the wives p e r c e i v e d that t h e i r l i v e s r e v o l v e d around t h e i r husbands. The need to c o n s t a n t l y s u p e r v i s e t h e i r husbands, d i f f i c u l t y i n engaging i n a c t i v i t i e s that took p l a c e o u t s i d e the home, and the husbands' l o s s of i n t e r e s t and s o c i a l withdrawal were i d e n t i f i e d as the aspects of the c a r e g i v i n g s i t u a t i o n which l e d to confinement. Accounts of emotional and p h y s i c a l " s t r a i n " were inherent i n a l l the c a r e g i v e r s ' e x p e r i e n c e s . Confinement thwarted the development of ways to manage the s t r a i n . With respect to maintenance of the f a m i l y u n i t , Larsen i d e n t i f i e d t h a t the dependents' c o n f u s i o n a f f e c t e d the m a r i t a l r e l a t i o n s h i p and changed the c a r e g i v e r s ' r o l e . A l l the wives r e p o r t e d that t h e i r m a r i t a l r e l a t i o n s h i p s had changed. Communication between the husbands and wives had d e t e r i o r a t e d with c o n v e r s a t i o n being almost u n i l a t e r a l i n two f a m i l i e s . The husbands la c k e d the a b i l i t y to respond to the wives' concerns which compounded the confinement. The wives found the t r a n s i t i o n to being r e s p o n s i b l e f o r a l l decision-making very d i f f i c u l t to d e a l with, p a r t i c u l a r l y 45 i n terms of f i n a n c i a l matters. Independence became a necessary a t t r i b u t e f o r the wife to develop i f she was going to m a i n t ain the husband at home. At times, the wives' independence l e d them to r e j e c t i n i t i a l o v e r t u r e s of h e l p from h e a l t h p r o f e s s i o n a l s . D e s p i t e the profound impact on t h e i r w e l l - b e i n g , Larsen notes the wives accepted the c a r e g i v i n g s i t u a t i o n and were r e s o l v e d to keep t h e i r husbands at home. They attempted to show acceptance of the s i t u a t i o n by o v e r l o o k i n g the dependent's l o s t a b i l i t i e s and by de-emphasizing the e f f e c t s of c o n f u s i o n . "Consequently, the r e a l i t i e s of each husband and wife appeared to d i f f e r c o n s i d e r a b l y from one another. The husband seemed unaware of the w i f e ' s added r e s p o n s i b i l i t i e s and burden. Instead, he expected t h a t she would continue i n the same r o l e as always toward him" (Larsen, 1985, p. 61). I t was observed by Larsen that the c a r e g i v i n g r o l e was h i g h l y v a l u e d by the wives. They c o n s i d e r e d that a c c e p t i n g the r o l e and the attendant s a c r i f i c e s was t h e i r "duty" as wives. G u i l t f e e l i n g s i n the wives occ u r r e d i f they p e r c e i v e d they were not f u l f i l l i n g t h e i r w i f e l y o b l i g a t i o n . I n s t i t u t i o n a l i z a t i o n was viewed by the wives with d i s t r e s s and they f e l t "morally o b l i g a t e d to t r y and prevent i t at the expense of t h e i r own comfort" (Larsen, 1985, p. 66). The wife d e r i v e d comfort from the d e c i s i o n to care f o r her husband by " p u t t i n g h e r s e l f i n t o h i s p o s i t i o n and hoping that her husband would have made the same s a c r i f i c e s as she 46 had made i f t h e i r p o s i t i o n s had been reversed" (Larsen, 1985, p. 65). Summary A broad range of l i t e r a t u r e was reviewed to pl a c e the re s e a r c h q u e s t i o n i n a t h e o r e t i c a l c o n t e x t . Normative data on the w e l l - b e i n g of o l d e r women i n gene r a l r e v e a l e d that o l d e r women experience a g e - r e l a t e d changes such as an in c r e a s e d prevalence of c h r o n i c h e a l t h problems, i n c r e a s e d use of p r e s c r i p t i o n medications, poor d i e t a r y p r a c t i c e s , and f i n a n c i a l h a r d s h i p . The s o c i a l i z a t i o n p a t t e r n s of women were d e s c r i b e d as p l a c i n g o l d e r c a r e g i v i n g women i n a d i s -advantaged p o s i t i o n i n comparison to t h e i r male c o u n t e r p a r t s . Thus, i t appears that the o l d e r c a r e g i v i n g wife may be more pred i s p o s e d to d e f i c i t s i n w e l l - b e i n g due to both a g e - r e l a t e d changes and s o c i a l i z a t i o n p a t t e r n s . In g e n e r a l , the l i t e r a t u r e and re s e a r c h on the w e l l -being of f a m i l y c a r e g i v e r s of the demented e l d e r l y i n d i c a t e s that c a r e g i v i n g may have a profound e f f e c t i n a l l domains of t h e i r w e l l - b e i n g . I t appears that the s t r e s s of c a r e g i v i n g may p r e d i s p o s e c a r e g i v e r s to develop new h e a l t h problems or may exacerbate e x i s t i n g problems. A wide range of d i s t r e s s i n g and negative f e e l i n g s such as g u i l t , a n x i e t y , and depression appear to be experienced by c a r e g i v e r s . The demands of c a r e g i v i n g are seen to preclud e them from p a r t i c i p a t i n g i n s o c i a l and l e i s u r e a c t i v i t i e s . F i n a l l y , c a r e g i v i n g may le a d to f i n a n c i a l problems due to the expenses a s s o c i a t e d with c a r i n g i n the home and by p r e c l u d i n g employment. 47 S e v e r a l of the s t u d i e s suggested that c a r e g i v i n g may have a more d e l e t e r i o u s e f f e c t on the w e l l - b e i n g of female c a r e g i v e r s , spousal c a r e g i v e r s , and c o - r e s i d e n t c a r e g i v e r s . However, no s t u d i e s s p e c i f i c a l l y addressed the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's D i s e a s e . Thus, t h i s t h e s i s i s designed to p r o v i d e such documentation. 48 CHAPTER THREE Research Design Overview T h i s study was an e x p l o r a t o r y d e s c r i p t i v e survey of the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's D i s e a s e . The data were gathered by means of a s e l f - a d m i n i s t e r e d q u e s t i o n n a i r e . The q u e s t i o n n a i r e , sample s e l e c t i o n c r i t e r i a , sample, data c o l l e c t i o n , s u b j e c t s ' r i g h t s , and data a n a l y s i s are d e s c r i b e d i n t h i s chapter. Quest i o n n a i re Data were c o l l e c t e d by means of the C a r e g i v e r Q u e s t i o n n a i r e developed by George (1983). In a d d i t i o n to items designed to e l i c i t data r e g a r d i n g c a r e g i v e r w e l l - b e i n g , s e v e r a l other kinds of i n f o r m a t i o n not r e l a t e d to t h i s study were i n c l u d e d i n the o r i g i n a l q u e s t i o n n a i r e . T h e r e f o r e , permission was given by George t o adapt i t as f o l l o w s : (1) c a t e g o r i e s of q u e s t i o n s not r e l a t e d to the purpose of t h i s study were excluded, and (2) three open-ended q u e s t i o n s were i n c l u d e d r e g a r d i n g recurrence or exa c e r b a t i o n of long-standing h e a l t h problems, recent development of h e a l t h problems, and recent changes i n p a t t e r n s of a l c o h o l consumption. Thus, the q u e s t i o n n a i r e used i n t h i s study c o n s i s t s of 78 q u e s t i o n s designed to gather b a s i c demographic i n f o r m a t i o n , e l i c i t data i n terms of each of the four domains of w e l l - b e i n g , and o b t a i n i n f o r m a t i o n about c a r e g i v e r h e a l t h 49 behaviours. F o r t y - t h r e e of the q u e s t i o n s r e q u i r e responses on three m u l t i - i t e m s c a l e s and 35 response c a t e g o r i e s are a combination of open and f i x e d a l t e r n a t i v e s . A more d e t a i l e d d e s c r i p t i o n of the q u e s t i o n n a i r e i s now pro v i d e d and a copy of the r e v i s e d instrument i s presented i n Appendix A. Basic C a r e g i v e r Demographic Information The f i r s t nine q u e s t i o n s address standard survey demographic items. These i n c l u d e c a r e g i v e r age, educat i o n , employment s t a t u s , main job, household s i z e , household composition, number of c h i l d r e n , and number of c h i l d r e n l i v i n g i n the l o c a l a r e a . P h y s i c a l H e a l t h The next seven q u e s t i o n s are designed to e l i c i t i n f o r m a t i o n about the p h y s i c a l h e a l t h of the c a r e g i v e r by det e r m i n i n g : h e a l t h s e r v i c e s u t i l i z a t i o n , number of days too i l l t o perform usual a c t i v i t i e s , use of ps y c h o a c t i v e medications and a l c o h o l , and whether the c a r e g i v e r has developed any new h e a l t h problems or worsening of p r e v i o u s h e a l t h problems. Three q u e s t i o n s o b t a i n data about more s u b j e c t i v e aspects of p h y s i c a l w e l l - b e i n g . Mental H e a l t h Symptoms and I n d i c a t o r s The next 24 q u e s t i o n s address i s s u e s of mental h e a l t h and p s y c h i a t r i c symptomatology. Included are s e l f - r a t i n g s of frequency of worry and usual s p i r i t s , and a C a r e g i v e r ' s S t r e s s Symptoms Scale which taps p e r c e p t i o n s of s t r e s s and p s y c h o l o g i c a l d i s t r e s s (George, 1983). S u b j e c t i v e w e l l - b e i n g i s assessed by means of a ten-item 50 A f f e c t Balance Scale and a s i n g l e - i t e m l i f e s a t i s f a c t i o n measure, both developed by Bradburn (1969). The s c a l e assesses t r a n s i t o r y aspects of emotion while the l i f e s a t i s f a c t i o n measure assesses more enduring f e e l i n g s of s u b j e c t i v e w e l l - b e i n g (George, 1983). H e a l t h Behaviours A p p r o p r i a t e h e a l t h behaviours may h e l p to decrease the negative e f f e c t s c a r e g i v i n g has on p h y s i c a l h e a l t h . However, the r o l e demands of c a r e g i v i n g may be such that c a r e g i v e r s may not be ab l e to f o l l o w h e a l t h regimens (George, 1983). Thus, f i v e q u e s t i o n s are i n c l u d e d i n the q u e s t i o n n a i r e to e l i c i t data about s e l e c t e d h e a l t h behaviours. P a r t i c i p a t i o n In And S a t i s f a c t i o n With P r e f e r r e d  A c t i v i t i e s The next 10 qu e s t i o n s seek i n f o r m a t i o n about s e v e r a l kinds of s o c i a l and l e i s u r e a c t i v i t i e s , and i n c l u d e a set of s u b j e c t i v e q u e s t i o n s comprising a C a r e g i v e r ' s S a t i s f a c t i o n with S o c i a l A c t i v i t i e s S c a l e (George, 1983). F i n a n c i a l Resources The remaining e i g h t q u e s t i o n s seek both o b j e c t i v e and s u b j e c t i v e i n f o r m a t i o n about f i n a n c i a l r e s o u r c e s . The s i x s u b j e c t i v e q u e s t i o n s make up a s i n g l e s c a l e c a l l e d the P e r c e i v e d Economic Status S c a l e (George, 1983). S c o r i n g of the Q u e s t i o n n a i r e The i n f o r m a t i o n on the C a r e g i v e r Q u e s t i o n n a i r e cannot be compressed or summarized i n t o a s i n g l e number nor can the 51 v a r i o u s i n d i c a t o r s i n each domain of w e l l - b e i n g . S c o r i n g p a t t e r n s f o r the instrument are d e s c r i b e d i n Appendix B. V a l i d i t y and R e l i a b i l i t y V a l i d i t y r e f e r s to the extent to which a t o o l measures that which i t i s intended to measure (Brink & Wood, 1983). George (1983) d i d not d i s c u s s the v a l i d i t y of the instrument. I t i s seen by t h i s r e s e a r c h e r to have both face and content v a l i d i t y . Face v a l i d i t y e x i s t s when i t i s apparent that the q u e s t i o n n a i r e i s r e l e v a n t to what the researcher i s t r y i n g to measure ( S e l l t i z , Wrightsman & Cook, 1976). The Ca r e g i v e r Q u e s t i o n n a i r e has face v a l i d i t y as i t was designed to measure w e l l - b e i n g i n terms of four domains, which was the purpose of t h i s study. Content v a l i d i t y e x i s t s when the items i n the instrument are r e p r e s e n t a t i v e of the known content i n the l i t e r a t u r e ( S e l l t i z et a l . , 1976). The q u e s t i o n n a i r e has content v a l i d i t y i n that the four domains of w e l l - b e i n g have been i d e n t i f i e d as sources of c a r e g i v e r problems i n the l i t e r a t u r e . R e l i a b i l i t y i s a measure of the instrument's c o n s i s t e n c y , s t a b i l i t y , and r e p e a t a b i l i t y (Brink & Wood, 1983). V a r i o u s measures of r e l i a b i l i t y e x i s t . The c r i t e r i o n of i n t e r n a l c o n s i s t e n c y was a p p l i e d to the four s c a l e s i n the que s t i o n n a r e . I n t e r n a l c o n s t i s t e n c y r e f e r s to the extent to which a l l items p e r t a i n i n g to a concept measure the concept (Brink & Wood, 1983). An alpha c o e f f e c i e n t with a range of 52 .60 to .80 i s i n d i c a t i v e of good r e l i a b i l i t y (Lord & Novaick, 1968). The alpha c o e f f i c i e n t s f o r three of the four s c a l e s are as f o l l o w s : (1) C a r e g i v e r ' s S t r e s s Symptoms .85 (2) C a r e g i v e r ' s S a t i s f a c t i o n with S o c i a l A c t i v i t i e s S c a le .77 (3) P e r c e i v e d Economic Status Scale .85 Furthermore, many of the items not i n c l u d e d i n the above three s c a l e s were taken from data c o l l e c t i o n sources which had been p r e v i o u s l y demonstrated to be r e l i a b l e i n measuring the concept i n q u e s t i o n (George, 1983). S e l e c t i o n C r i t e r i a In order to be e l i g i b l e to p a r t i c i p a t e i n the study, the s u b j e c t s were r e q u i r e d t o : (1) be wives over 55 years of age who were c u r r e n t l y c a r i n g f o r a husband with Alzheimer's Disease and had been doing so f o r a p e r i o d of at l e a s t s i x months, (2) r e s i d e i n t h e i r own home with t h e i r husband i n the Lower Mainland area of B r i t i s h Columbia or Vancouver I s l a n d , and (3) read and w r i t e E n g l i s h . Sample I t was o r i g i n a l l y a n t i c i p a t e d that a convenience sample of 40 to 50 s u b j e c t s c o u l d be r e c r u i t e d through three Alzheimer's Support A s s o c i a t i o n Groups and one C a r e g i v e r Support Group. A combination of f a c t o r s r e s u l t e d i n t h i s not being f e a s i b l e , the primary reason being that the m a j o r i t y of people a t t e n d i n g these groups were those whose p a r t n e r s had 53 been p l a c e d i n a care f a c i l i t y . There were a l s o a small number of husbands c a r i n g f o r a wife with Alzheimer's D i s e a s e . F i n a l l y , a number of the group a t t e n d e r s had spouses who had h e a l t h problems other than Alzheimer's D i s e a s e , f o r example, c o n f u s i o n caused by a s t r o k e . Thus, over a p e r i o d of two months a convenience sample of 29 s u b j e c t s was r e c r u i t e d through a t o t a l of 13 a g e n c i e s : (1) Two Alzheimer's Support A s s o c i a t i o n Groups i n the Lower Mainland area of B r i t i s h Columbia. (2) One C a r e g i v e r Support Group o p e r a t i n g i n the Vancouver area. (3) Three Alzheimer's Support A s s o c i a t i o n Groups from Vancouver I s l a n d . (4) Four Adult Day Cares s i t u a t e d i n Vancouver. (5) One Adult Day Care s i t u a t e d i n North Vancouver. (6) One Adult Day Care s i t u a t e d i n Burnaby. (7) One Alzheimer's C l i n i c o p e r a t i n g out of a suburban h o s p i t a l i n Vancouver. Data C o l l e c t i o n The procedure by which s u b j e c t s were r e c r u i t e d from the agencies v a r i e d . S u b j e c t s from the two Alzheimer's Support A s s o c i a t i o n Groups i n the Lower Mainland area and the C a r e g i v e r Support Group in Vancouver were r e c r u i t e d i n the f o l l o w i n g manner. The re s e a r c h e r obtained p e r m i s s i o n from the a p p r o p r i a t e persons to at t e n d a meeting h e l d by each of the groups. At 54 the meeting the researc h e r v e r b a l l y d e s c r i b e d the proposed r e s e a r c h p r o j e c t , the c r i t e r i a f o r su b j e c t s e l e c t i o n , and what was r e q u i r e d of s u b j e c t s . Those who met the c r i t e r i a and wished to p a r t i c i p a t e were asked to remain a f t e r the meeting to complete the data c o l l e c t i o n instrument. A w r i t t e n l e t t e r of consent accompanied the data c o l l e c t i o n t o o l . The researc h e r was present d u r i n g completion of the q u e s t i o n n a i r e to provide a s s i s t a n c e i f r e q u i r e d . A t o t a l of s i x s u b j e c t s was r e c r u i t e d i n t h i s manner. S e v e r a l of the su b j e c t s requested to complete the q u e s t i o n n a i r e i n t h e i r own homes and retu r n e d the completed q u e s t i o n n a i r e by m a i l . The re t u r n r a t e f o r these p a r t i c i p a n t s was 100%. S e v e r a l group members i n d i c a t e d they knew of wives not in attendance at the meeting whom they f e l t would be 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 i n the study. The procedure f o r r e c r u i t i n g these s u b j e c t s was as f o l l o w s . A l e t t e r e x p l a i n i n g the circumstances under which the rese a r c h e r o b t a i n e d t h e i r name was mailed to each of the p o t e n t i a l s u b j e c t s . A f t e r a s u i t a b l e time p e r i o d , the rese a r c h e r c o n t a c t e d the s u b j e c t s by phone. At t h i s time, the r e s e a r c h p r o j e c t was e x p l a i n e d and any que s t i o n s were answered. S u b j e c t s agreeing to p a r t i c i p a t e i n the study were mailed the q u e s t i o n n a i r e and l e t t e r of consent. A stamped addressed envelope was i n c l u d e d f o r r e t u r n of the completed q u e s t i o n n a i r e . A t o t a l of seven e l i g i b l e s u b j e c t s was con t a c t e d i n t h i s manner, of whom s i x agreed to p a r t i c i p a t e . Only three of these s u b j e c t s returned the completed 55 q u e s t i o n n a i r e . Subjects from the remaining sources were r e c r u i t e d i n a manner s i m i l a r to the above except that the agency contact person obtained p e r m i s s i o n from p o t e n t i a l s u b j e c t s f o r the res e a r c h e r to c o n t a c t them by phone. Each of the 21 e l i g i b l e s u b j e c t s c o n t a c t e d agreed to p a r t i c i p a t e and a l l but one ret u r n e d the completed q u e s t i o n n a i r e s . Thus, 29 s u b j e c t s were r e c r u i t e d i n t o t a l . S u b j e c t s ' Rights A v e r b a l and w r i t t e n d e s c r i p t i o n of the study and the r e s e a r c h e r ' s e x p e c t a t i o n s of the s u b j e c t s was giv e n to the s u b j e c t s p r i o r to o b t a i n i n g t h e i r w r i t t e n consent to p a r t i c i p a t e . A copy of the w r i t t e n m a t e r i a l i s p r o v i d e d i n Appendix C. Data A n a l y s i s Completed q u e s t i o n n a i r e s were coded, e d i t e d , and pl a c e d on a computer f i l e . The data were c a t e g o r i z e d and analyzed i n terms of demographic i n f o r m a t i o n , the four domains of w e l l - b e i n g , and c a r e g i v e r h e a l t h behaviours. D e s c r i p t i v e s t a t i s t i c s were used to analyze the data with frequency d i s t r i b u t i o n s , measures of c e n t r a l tendency, and d i s p e r s i o n being most f r e q u e n t l y employed. The one-sample t - t e s t was performed on the means of s e l e c t e d measures of w e l l - b e i n g f o r the sample and a general p o p u l a t i o n comparison sample i n order to determine group d i f f e r e n c e s . The two-sample t - t e s t was performed on means of 56 the sample and a comparison sample of c a r e g i v e r s . A s i g n i f i c a n c e l e v e l of l e s s than or equal to .05 was used. 57 CHAPTER FOUR P r e s e n t a t i o n and D i s c u s s i o n of F i n d i n g s Overview The purpose of t h i s chapter i s to present and d i s c u s s the f i n d i n g s of t h i s study. The r e s u l t s of the a n a l y s i s of responses to the C a r e g i v e r Q u e s t i o n n a i r e w i l l be d i s c u s s e d i n terms of demographic c h a r a c t e r i s t i c s , p h y s i c a l h e a l t h , mental h e a l t h symptoms and i n d i c a t o r s , h e a l t h behaviours, p a r t i c i p a t i o n i n and s a t i s f a c t i o n with p r e f e r r e d a c t i v i t i e s , and f i n a n c i a l r e s o u r c e s . As there was no way to measure the wives' w e l l - b e i n g before they commenced c a r e g i v i n g , i t i s not known to what degree t h e i r w e l l - b e i n g was changed by the c a r e g i v i n g experience per se. However, comparison of the w e l l - b e i n g of the sample to the w e l l - b e i n g of the g e n e r a l p o p u l a t i o n and other c a r e g i v e r samples p r o v i d e s u s e f u l i n f o r m a t i o n . The general p o p u l a t i o n comparison sample r e f e r r e d to i n t h i s d i s c u s s i o n i s the one d e s c r i b e d by George (1983; 1984). The main c a r e g i v e r sample i s a l s o George's (1983; 1984). Though both of these samples are American, the s i m i l a r i t i e s between Canadian and American s o c i e t y are such that the comparisons are a p p r o p r i a t e . Demographic Information The age range of the 29 c a r e g i v i n g wives who p a r t i c i p a t e d i n the study was 57 to 81 years with an average 58 age of 67 ye a r s . The c a r e g i v e r s had, on average, completed 11 years of s c h o o l i n g with seven of the c a r e g i v e r s having completed some c o l l e g e education. In terms of employment s t a t u s , three of the wives were c u r r e n t l y employed o u t s i d e the home. The m o t i v a t i n g f a c t o r behind t h e i r employment does not appear to be f i n a n c i a l as these wives viewed t h e i r f i n a n c i a l s i t u a t i o n p o s i t i v e l y with the exce p t i o n of one wife who f e l t she would not have enough money to meet her f u t u r e needs. In c o n v e r s a t i o n , one of these women s t a t e d that being a b l e to work o u t s i d e the home was "the only way she c o u l d keep her s a n i t y . " I t may w e l l be that employment o u t s i d e the home was a means by which these three women c o u l d b e t t e r cope with the c a r e g i v i n g s i t u a t i o n . The remainder of the wives i d e n t i f i e d themselves as being r e t i r e d or housewives. Twenty-seven (93.1%) of the respondents l i v e d alone with t h e i r husbands who ranged i n age from 59 to 89 years and who were, on average, 72 years o l d . One s u b j e c t ' s 27-year o l d daughter l i v e d at home while another s u b j e c t had a 23-year o l d son and a 20-year o l d daughter at home. Though the s u b j e c t s r e p o r t e d an average of 2.38 c h i l d r e n , r e l a t i v e l y few c h i l d r e n (average 1.14) were l o c a l l y a v a i l a b l e . Twenty-five of 28 p a r t i c i p a n t s (89%) r e p o r t e d they were the s o l e c a r e g i v e r s f o r t h e i r husbands, i n c l u d i n g the two wives who had c h i l d r e n r e s i d i n g with them. Thus, i t i s q u e s t i o n a b l e i f having c h i l d r e n at home would a l t e r the wives' p e r c e p t i o n s of t h e i r s o l e c a r e g i v i n g r o l e . As Crossman et a l . , (1981) p o i n t out, a d u l t c h i l d r e n view the 59 mother as a " p i v o t a l " member of the f a m i l y who w i l l "keep t h i n g s t o g e t h e r " d e s p i t e a change in circumstances. The average length of c a r e g i v i n g r e p o r t e d was 42 months with a range of 12 to 108 months. Many of the respondents i n d i c a t e d on the q u e s t i o n n a i r e that they estimated the l e n g t h of c a r e g i v i n g on the b a s i s of when the husband was diagnosed with Alzheimer's Disease. Thus, i t i s c o n c e i v a b l e that the average number of months of c a r e g i v i n g i s , i n f a c t , longer than r e p o r t e d . P h y s i c a l H e a l t h The means of measures a s s e s s i n g the p h y s i c a l h e a l t h of the study wives are r e p o r t e d i n Table 1. Comparison of the study sample means on s e l e c t e d measures of p h y s i c a l h e a l t h to those of the general p o p u l a t i o n and comparison c a r e g i v e r samples are presented i n Table 2. E i g h t of 28 respondents (28.6%) s t a t e d they had not seen a p h y s i c i a n i n the past s i x months while three (10.7%) re p o r t e d f i v e p h y s i c i a n v i s i t s . Respondents r e p o r t e d an average of 1.82 p h y s i c i a n v i s i t s i n the past s i x months. T h i s p a t t e r n i s s i m i l a r to t h a t of the m a j o r i t y of Canada's e l d e r l y , who, on average, v i s i t a p h y s i c i a n at l e a s t y e a r l y ( M i n i s t e r of Supply and S e r v i c e s , 1983). However, i t i s i n t e r e s t i n g to note that the wives saw a p h y s i c i a n l e s s o f t e n than d i d the s u b j e c t s i n both American comparison samples. The d i f f e r e n c e s i n u t i l i z a t i o n p a t t e r n s may be p a r t l y e x p l a i n e d by the f a c t that both comparison samples were more heterogenous. P a t t e r n s of h e a l t h care u t i l i z a t i o n vary 60 widely a c r o s s the l i f e s p a n . I t may a l s o be that the r o l e demands of c a r e g i v i n g are such that they preclude the c a r e g i v e r s from a r r a n g i n g to see t h e i r p h y s i c i a n s more o f t e n . A l s o , many p h y s i c i a n s and other h e a l t h care p r o f e s s i o n a l s have been l e s s than sympathetic to the p l i g h t of the female f a m i l y c a r e g i v e r (Polansky, 1980). T h i s may have prevented the wives i n the sample from v i s i t i n g t h e i r p h y s i c i a n s to d i s c u s s t h e i r h e a l t h concerns. Table 1 Ca r e g i v e r P h y s i c a l H e a l t h V a r i a b l e Mean V i s i t s to p h y s i c i a n i n past s i x months 1.82 H o s p i t a l days i n past s i x months .50 Days s i c k i n past s i x months 2.19 Longstanding h e a l t h problems worsened .41* New h e a l t h problems developed .24* Ca r e g i v e r takes p s y c h o t r o p i c drugs .45* P a t t e r n of a l c h o h o l consumption changed .17* * S c a l e : 0=no, 1=yes S e l f - r a t e d h e a l t h 2.48 (l=poor, 2 = f a i r , 3=good, 4=excellent) Current h e a l t h compared to past 1.60 (1=worse, 2=same, 3=better) H e a l t h l i m i t a t i o n s 1.80 (1=not at a l l , 2=some, 3=a great d e a l ) 61 Table 2 Comparison of Means on P h y s i c a l Health Measures; Study Sample,  General P o p u l a t i o n and Comparison C a r e g i v e r Sample V a r i a b l e Study General C a r e g i v e r a b Sample P o p u l a t i o n Sample Mean Mean Mean V i s i t s to p h y s i c i a n 1.82 Use p s y c h o t r o p i c .45 drugs S e l f - r a t e d h e a l t h 2.48 a= one sample t - t e s t b= two sample t - t e s t *= s i g n i f i c a n t at p= .05 -= not s i g n i f i c a n t at p= .05 The m a j o r i t y (86.2%) of the p a r t i c i p a n t s had not experienced h o s p i t a l i z a t i o n i n the past s i x months; however, two (6.9%) p a r t i c i p a n t s had been h o s p i t a l i z e d f o r a 6- to 7-day p e r i o d . The average number of r e p o r t e d days s i c k such that p a r t i c i p a n t s were unable to c a r r y out t h e i r normal a c t i v i t i e s was 2.18, the range being 0 to 14 days. The m a j o r i t y of the 27 p a r t i c i p a n t s (63%) who completed t h i s item r e p o r t e d that they had not been i l l . T h i s i s markedly lower than the number of d i s a b i l i t y days r e p o r t e d by o l d e r women i n the 2.91 .19 2.82 2.31 .28 2.99 62 Canada He a l t h Survey ( M i n i s t e r of Supply and S e r v i c e s , 1983). S e v e r a l of the study wives i n d i c a t e d on the q u e s t i o n n a i r e and in c o n v e r s a t i o n that they "had no time to be s i c k . " Thus, i t i s q u i t e c o n c e i v a b l e that the wives' 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 d i d not enable them to have d i s a b i l i t y days and t h a t , i f they were were r e l i e v e d of 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 , they might r e p o r t more d i s a b i l i t y days. The wives r e p o r t e d h e a l t h concerns s i m i l a r to those r e p o r t e d by the wives of husbands with COPD (Sexton & Munro, 1985) and by the supporters of the mentally i n f i r m e l d e r l y d e s c r i b e d by Wheatley (1980). Twelve (41.4%) of the p a r t i c i p a n t s r e p o r t e d that l o n g - s t a n d i n g h e a l t h problems had reappeared or gotten worse i n the past s i x months. Hypertension, a r t h r i t i s , and c a r d i a c c o n d i t i o n s accounted f o r 50%, 25%, and 16.7% of the c i t e d h e a l t h problems, r e s p e c t i v e l y . Other problems r e p o r t e d by i n d i v i d u a l p a r t i c i p a n t s were c o n d i t i o n s such as a back problem, d e p r e s s i o n , r e c u r r e n t cancer, bowel i r r i t a t i o n , a h e r n i a , and f a t i g u e . Seven (24.14%) of the p a r t i c i p a n t s c i t e d one h e a l t h problem only, four (13.80 %) re p o r t e d two h e a l t h problems, and one respondent l i s t e d t h r e e . Seven (24.14%) of the women re p o r t e d that new h e a l t h problems had developed i n the past s i x months. A r t h r i t i s was the most f r e q u e n t l y c i t e d problem, accounting f o r 42.9% of the new h e a l t h concerns. I n d i v i d u a l p a r t i c i p a n t s c i t e d new h e a l t h concerns such as c h r o n i c p a i n , nausea, bowel i r r i t a t i o n , a s k i n rash, f a t i g u e , and a c a r d i a c c o n d i t i o n . I t 63 should be noted that the h e a l t h problems d i s c u s s e d above were s e l f - r e p o r t e d and not s u b s t a n t i a t e d by medical d i a g n o s i s . The degree to which the c a r e g i v i n g experience c o n t r i b u t e d to the i n c i d e n c e of c h r o n i c h e a l t h concerns amongst the study wives i s d i f f i c u l t to estimate given that 86% of Canadians 65 years of age and o l d e r r e p o r t at l e a s t one c h r o n i c h e a l t h problem (Ableson et a l . , 1983). In a d d i t i o n , the two most common problems r e p o r t e d by the wives in the study, a r t h r i t i s and hy p e r t e n s i o n , are the two most p r e v a l e n t h e a l t h problems i n o l d e r women ( M i n i s t e r of Supply and S e r v i c e s , 1983). However, i t i s i n t e r e s t i n g to note that the most frequent problem l i s t e d , h y p e r t e n s i o n , i s g e n e r a l l y thought to be s t r e s s - r e l a t e d to some degree (Faulkner, 1980). The data p e r t a i n i n g to the wives' mental h e a l t h s u b s t a n t i a t e the high degree of s t r e s s they were under. Furthermore, i t i s q u i t e f e a s i b l e that the heavy p h y s i c a l demands of c a r e g i v i n g such as t o i l e t i n g , b athing, and d r e s s i n g the dependent may be r e s p o n s i b l e , i n p a r t , f o r the prevalence of a r t h r i t i s among the study wives. T h i r t e e n (44.83%) of the respondents r e p o r t e d using p s y c h o t r o p i c drugs. Each medication was v e r i f i e d as being a p r e s c r i p t i o n p s y c h o a c t i v e m e d i c a t i o n . Data i n d i c a t e that the drugs were used mainly f o r the purpose of a s s i s t i n g the respondents to s l e e p . Each of the 13 respondents was only using one p s y c h o t r o p i c drug. Two respondents i n d i c a t e d they used over-the-counter medications such as a n t i h i s t a m i n e s and acetaminophen to a s s i s t them to s l e e p . 64 T h i s r a t e of p s y c h o t r o p i c drug use i s s i g n i f i c a n t l y g r e a t e r than i s true f o r both the comparison samples. The d i f f e r e n c e i n means i s e x p l a i n e d , i n p a r t , by the f a c t that women, i n g e n e r a l , have a high r a t e of p s y c h o t r o p i c drug use. For example, George (1983) r e p o r t s that the N a t i o n a l Center f o r H e a l t h S t a t i s t i c s i n the Un i t e d S t a t e s estimated that 8 to 10% of the general p u b l i c used p s y c h o a c t i v e drugs dur i n g a six-month p e r i o d , whereas 45% of North American women take mood-altering drugs and 50% of p r e s c r i p t i o n drugs are p r e s c r i b e d to women over the age of 60 years ( P o r c i n o , 1985). Thus, the r a t e of p s y c h o t r o p i c drug use by the study wives i s s i m i l a r to that of o l d e r women i n g e n e r a l . However, the s t r e s s of c a r e g i v i n g , at some p o i n t , may f u r t h e r e l e v a t e the study wives' r a t e of p s y c h o t r o p i c drug use. In terms of changes i n p a t t e r n s of a l c o h o l consumption, the m a j o r i t y of the sample (82.8%) r e p o r t e d no change. Three s u b j e c t s r e p o r t e d t h e i r consumption had decreased, whereas two r e p o r t e d an in c r e a s e i n t h e i r a l c o h o l use. The stigma a t t a c h e d to e x c e s s i v e a l c o h o l i n t a k e may have r e s u l t e d i n the s u b j e c t s being l e s s w i l l i n g to a c c u r a t e l y r e p o r t t h e i r a l c o h o l use. On average, respondents r a t e d t h e i r h e a l t h between f a i r (51.7%) and good (44.8%). Seventeen of 28 women (60.7%) f e l t t h e i r h e a l t h was the same as f i v e years ago and 11 (39.3%) f e l t t h e i r h e a l t h was worse. T h i r t e e n (44.8%) of the sample f e l t t h e i r h e a l t h problems prevented them, to some degree, from doing the t h i n g s they wanted t o . Eleven (37.9%) 65 respondents f e l t t h e i r h e a l t h d i d not i n t e r f e r e with t h e i r a c t i v i t y at a l l while f i v e (17.2%) p a r t i c i p a n t s r e p o r t e d t h e i r h e a l t h i n t e r f e r e d a great d e a l . S u b j e c t i v e h e a l t h r a t i n g s have been shown to be congruent with p h y s i c i a n s ' assessments of h e a l t h . However, whenever there i s an incongruency between the s u b j e c t i v e and p h y s i c i a n h e a l t h assessment, the tendency i s f o r the i n d i v i d u a l to have overestimated h i s / h e r h e a l t h s t a t u s (Maddox & Douglas, 1983). T h e r e f o r e , i t i s p o s s i b l e t h a t , i n some cases, the study wives' h e a l t h was a c t u a l l y poorer than r e p o r t e d . The wives' s e l f - h e a l t h r a t i n g i s s i g n i f i c a n t l y lower than that of the general p o p u l a t i o n and the comparison c a r e g i v e r samples. Low s e l f - h e a l t h r a t i n g s r e l a t i v e to a comparison sample were a l s o found i n Sexton and Munro's study (1985). The c a r e g i v e r s i n Marcus and Jaeger's (1982) study r e p o r t e d s e l f - h e a l t h r a t i n g s s i m i l a r to those f o r s u b j e c t s i n t h i s study. However, the c a r e g i v e r s i n Robertson and R e i s n e r ' s (1982) study r a t e d t h e i r h e a l t h as good to e x c e l l e n t . Mental H e a l t h Based on the r e s u l t s of p r e v i o u s r e s e a r c h (Grad & Sainsbury, 1963; Sanford, 1975; Wheatley, 1980; Rabins et a l . , 1982; Niederehe et a l . , 1983; George, 1983;1984) the primary determinant of w e l l - b e i n g expected to be a f f e c t e d by c a r e g i v i n g i s mental h e a l t h , an e x p e c t a t i o n supported by the d e s c r i p t i v e data i n Tables 3 and 4. 66 Table 3 p r e s e n t s data on 2 mental h e a l t h i n d i c a t o r s , frequency of worry and general l e v e l of s p i r i t s . In terms of frequency of worry, the sample mean i s 2.41 which l i e s between f a i r l y o f t e n and very o f t e n . The mean l e v e l of g e n e r a l s p i r i t s i s 2.64 which l i e s between low and good s p i r i t s . T able 3 Mental He a l t h I n d i c a t o r s Mean Frequency of worry 2.41 (l=never, 2 = f a i r l y , 3=very often) Usual s p i r i t s 2.64 (l=very low, 2=low, 3=good, 4=very good) The 22 items i n Table 4 are the p s y c h i a t r i c s t r e s s symptoms, the f i r s t twenty-one of which comprise the C a r e g i v e r ' s S t r e s s Symptom S c a l e . The 22nd item, lac k of a p p e t i t e , i s an e x t r a item not i n c l u d e d i n the c o n s t r u c t i o n of the s c a l e . The s c a l e has a p o t e n t i a l range of 0 to 21. The a c t u a l range f o r the s u b j e c t s i n t h i s study was 2 to 20, with a mean of 11.17, which r e v e a l s the s u b j e c t s were e x p e r i e n c i n g a severe degree of s t r e s s . The s i x most p r e v a l e n t symptoms re p o r t e d by the s u b j e c t s are as f o l l o w s : Twenty-six (89.7%) of the p a r t i c i p a n t s r e p o r t e d f e e l i n g overwhelmed by r e s p o n s i b i l i t y , 25 (86.2%) had t r o u b l e g e t t i n g to s l e e p or s t a y i n g a s l e e p , 24 (82.8%) Table 4 P s y c h i a t r i c S t r e s s Symptoms Sc a l e : (0=no, 1=yes) Mean Overwhelmed by r e s p o n s i b i l i t y .90 Trouble g e t t i n g or s t a y i n g a s l e e p .86 Bothered by nervousness or t e n s i o n .83 Worry a l o t of the time .76 Sleep i s f i t f u l and d i s t u r b e d .75 Bothered by f e e l i n g s of g u i l t .66 Wake up without f e e l i n g r e s t e d .65 F e e l a lone, even among f r i e n d s .63 F i n d l i f e u n i n t e r e s t i n g .62 Wonder whether l i f e i s worthwhile .59 Bothered by f e e l i n g hot a l l over .56 F e e l can't take care of t h i n g s .52 F e e l p e r s o n a l worries are a f f e c t i n g h e a l t h .49 T roubled by heart pounding or SOB .49 Bothered by r e s t l e s s n e s s .45 Bothered by a c i d stomach .38 Have balance problems .25 F e e l weak a l l over .22 F e e l no one understands .22 Troubled by headaches .18 Bothered by " c o l d sweats" .14 Have poor a p p e t i t e .10 Mean f o r C a r e g i v e r ' s S t r e s s Symptom Scale 11.17 68 were bothered by nervousness or t e n s i o n , 22 (75.9%) repo r t e d they worried a l o t of the time, 21 of 28 (75%) s t a t e d s l e e p was f i t f u l , and 19 (65.5%) were bothered by f e e l i n g s of g u i l t . S t r e s s symptoms r e l a t e d to d i f f i c u l t y with s l e e p have e x c e p t i o n a l l y h i g h occurrence. T h i s i s c o n s i s t e n t with the s u b j e c t s ' r e p o r t s that the major reason f o r u s i n g p s y c h o a c t i v e drugs was to a s s i s t them to s l e e p . While i t has been documented that o l d e r i n d i v i d u a l s experience night-time awakening (Hayter, 1983), i t i s most l i k e l y t h a t the wives' poor s l e e p may be due, i n some cases, to the husbands' day-night r e v e r s a l , wandering, and p a c i n g . The s t r e s s of having an i l l person i n the home, i n i t s e l f , may have r e s u l t e d i n some of the d i f f i c u l t y the wives experienced r e g a r d i n g o b t a i n i n g a r e s t f u l s l e e p . D i f f i c u l t y with s l e e p was a l s o noted among the wives i n Sexton & Munro's study (1985). The authors suggested that t h i s was most l i k e l y due to the husbands' compromised b r e a t h i n g due to COPD. Table 5 p r e s e n t s a comparison of the study wives' mean and the 2 comparison sample means on the C a r e g i v e r ' s S t r e s s Symptom S c a l e . S i g n i f i c a n t d i s c r e p a n c i e s are noted. The wives averaged almost four times as many s t r e s s symptoms as the general p o p u l a t i o n . Sexton and Munro (1985) a l s o r e p o r t e d higher l e v e l s of s u b j e c t i v e s t r e s s i n the wives c a r i n g f o r a husband with COPD versus a comparison sample of wives whose husbands d i d not have a c h r o n i c i l l n e s s . 69 Table 5 Comparison of Means on P s y c h i a t r i c S t r e s s Symptoms: Study  Sample, General P o p u l a t i o n and Comparison C a r e g i v e r Samples Study General C a r e g i v e r a 1 Sample P o p u l a t i o n Sample Mean Mean Mean C a r e g i v e r ' s S t r e s s Symptom Scale 11.17 3.04 8.34 * a= one sample t - t e s t b= two sample t - t e s t *= s i g n i f i c a n t at p= .001 These d i s c r e p a n c i e s a l s o h o l d t r u e when comparing the sample to George's c a r e g i v e r samples. The s u b j e c t s i n t h i s study experienced approximately o n e - t h i r d more s t r e s s symptoms than George's c a r e g i v e r sample. T h i s i s c o n s i s t e n t with George's (1984) f i n d i n g s that women c a r e g i v e r s r e p o r t e d a l a r g e r number of s t r e s s symptoms than d i d the male c a r e g i v e r s . Z a r i t (1982), i n a conference p r e s e n t a t i o n r e p o r t e d by F i t t i n g s and Rabins (1985), r e p o r t e d that wives who care f o r demented spouses r e p o r t e d more p s y c h o l o g i c a l d i s t r e s s than d i d male spouses i n the same s i t u a t i o n . Marcus and Jaeger (1982) a l s o r e p o r t e d that the burden scores were higher amongst the women i n t h e i r sample of c a r e g i v e r s . I n v e s t i g a t o r s such as Niederehe et a l . (1982) and Gi h o o l y (1984) suggest that r e p o r t s of more d i s t r e s s by female c a r e g i v e r s may be due to male c a r e g i v e r s being l e s s w i l l i n g to admit d i s t r e s s . Reports of l e s s s t r e s s by male c a r e g i v e r s 70 may a l s o be due to the f a c t t h a t male c a r e g i v e r s have been r e p o r t e d to r e c e i v e more a s s i s t a n c e than t h e i r female c o u n t e r p a r t s (Polansky, 1982). Table 6 presents data p e r t a i n i n g to p a r t i c i p a n t s ' s u b j e c t i v e w e l l - b e i n g . Table 6 Measures of S u b j e c t i v e W e l l - b e i n g V a r i a b l e Mean S i n g l e - i t e m r a t i n g of l i f e S a t i s f a c t i o n 1.31 (l=not s a t i s f y i n g , 2 = f a i r l y , 3=very s a t i s f y i n g ) A f f e c t Balance Scale S c a l e : (0=no, 1=yes) P o s i t i v e : e x c i t e d or i n t e r e s t e d .41 Negative: r e s t l e s s .39 P o s i t i v e : proud because complimented .79 Negative: l o n e l y or remote from others .49 P o s i t i v e : p l e a s e d about accomplishing something .79 Negative: bored .45 P o s i t i v e : on top of the world .14 Negative: depressed or very unhappy .72 P o s i t i v e : f e e l t h i n g s going your way .28 Negat i v e : upset because of c r i t i c i s m .31 E x t r a : angry or impatient .87 A f f e c t Balance Scale t o t a l mean score 5.20 71 The sample mean f o r the Bradburn s i n g l e - i t e m r a t i n g of o v e r a l l l i f e s a t i s f a c t i o n i s 1.31, which l i e s between not s a t i s f y i n g and f a i r l y s a t i s f y i n g . The m a j o r i t y of the respondents (20 or 69%) repor t e d they found l i f e to be u n s a t i s f y i n g . The wives' r a t i n g of t h e i r l i f e s a t i s f a c t i o n as u n s a t i s f a c t o r y i s c o n s i s t e n t with the high number of s t r e s s symptoms experienced and t h e i r almost negative a f f e c t . I t may be that the wives' low l i f e s a t i s f a c t i o n i s r e l a t e d to the c a r e g i v i n g s i t u a t i o n . The second measure of s u b j e c t i v e w e l l - b e i n g i s the Bradburn A f f e c t Balance S c a l e . The s c a l e has a p o t e n t i a l range of 0 to 10. The range for the s u b j e c t s i n t h i s sample was 1 to 10 with a sample mean of 5.2. T h i s i n d i c a t e s the s u b j e c t s had only a very s l i g h t predominance of p o s i t i v e a f f e c t , a f i n d i n g c o n s i s t e n t l y documented i n other s t u d i e s of c a r e g i v e r s (Sanford, 1975; P r i n g l e , 1982; Rabins et a l . , 1982; Niederehe at a l , 1983). In terms of i n d i v i d u a l items, f e e l i n g s of anger and impatience were the most p r e v a l e n t negative emotions expressed by the s u b j e c t s . I t i s i n t e r e s t i n g to note that t h i s item was an e x t r a item not i n c l u d e d i n the c a l c u l a t i o n of the mean of the A f f e c t Balance S c a l e . If t h i s item were i n c o r p o r a t e d i n the s c a l e the a f f e c t of the s u b j e c t s would be n e g a t i v e . The h i g h degree of anger and impatience experienced by the s u b j e c t s i n t h i s study i s of p a r t i c u l a r s a l i e n c e given the i n c r e a s i n g concern r e g a r d i n g e l d e r abuse by c a r e g i v e r s . Twenty of 28 s u b j e c t s (71.4%) r e p o r t e d f e e l i n g depressed 72 or very unhappy. Only seven of 25 p a r t i c i p a n t s (28%) f e l t t h i n g s were going t h e i r way and only four s u b j e c t s (13.8%) f e l t on top of the world. Twenty-two of 28 s u b j e c t s (78.6%) d i d r e p o r t f e e l i n g s of p r i d e and accomplishment. S i m i l a r to the c a r e g i v e r s i n Marcus and Jaeger's (1982) study, s e v e r a l of the s u b j e c t s i n d i c a t e d that the source of these f e e l i n g s was s o l v i n g problems r e l a t e d to the care of t h e i r dependent. Thus, i t appears that meeting the c h a l l e n g e s of c a r e g i v i n g may enhance some c a r e g i v e r s ' s e l f - e s t e e m . Table 7 presents a comparison of the study sample means on measures of s u b j e c t i v e w e l l - b e i n g to the means of the 2 comparison samples. The wives' l i f e - s a t i s f a c t i o n i s s i g n i f i c a n t l y lower than that of the general p o p u l a t i o n and George's c a r e g i v e r sample* Fen g l e r & Goodrich (1978) a l s o found that the l i f e s a t i s f a c t i o n of the wives i n t h e i r c a r e g i v e r sample was lower than i n the g e n e r a l p o p u l a t i o n . The study wives' l i f e s a t i s f a c t i o n i s lower than the c a r e g i v e r s i n P r i n g l e ' s (1982) study. The a f f e c t of the study wives i s a l s o s i g n i f i c a n t l y more negative than t h a t of the g e n e r a l p o p u l a t i o n and George's c a r e g i v e r sample. The f a c t t h a t e p i d e m i o l o g i c a l s t u d i e s demonstrate that women re p o r t more symptoms of d e p r e s s i o n than men ( F i t t i n g & Rabins, 1985) does not f u l l y account f o r the h i g h l y s i g n i f i c a n t d i f f e r e n c e s i n a f f e c t between the wives and the comparison samples. 73 Table 7 Comparison of Means on S u b j e c t i v e Well-Being Measures: Study  Sample, General P o p u l a t i o n and Comparison C a r e g i v e r Sample V a r i a b l e Study General C a r e g i v e r a b Sample P o p u l a t i o n Sample Mean Mean Mean L i f e S a t i s f a c t i o n 1.31 2.46 1.97 Scale (1=not s a t i s f y i n g , 2 = f a i r l y , 3=very s a t i s f y i n g ) A f f e c t Balance 5.20 7.07 5.95 ( 0 = t o t a l l y negative a f f e c t , 5=balanced a f f e c t , I 0 = t o t a l l y p o s i t i v e a f f e c t ) a= one sample t - t e s t b= two sample t - t e s t *= s i g n i f i c a n t at p= .05 Hea l t h Behaviours Means f o r the h e a l t h behaviour items i n c l u d e d i n the q u e s t i o n n a i r e are presented i n Table 8. There i s c o n s i d e r a b l e v a r i a t i o n i n the s e l f - r e p o r t s of h e a l t h b ehaviours. Twenty-one (72.4%) of the s u b j e c t s do not e x e r c i s e r e g u l a r l y , a s i t u a t i o n r e p o r t e d l y common amongst o l d e r women ( M i n i s t e r of Supply and S e r v i c e s , 1983). However, the demands of c a r e g i v i n g may exacerbate the tendency of the wives to be sedentary by l e a v i n g them too p h y s i c a l l y exhausted or with too l i t t l e time to pursue 74 p h y s i c a l e x e r c i s e . Nineteen (65.5%) p a r t i c i p a n t s r e p o r t e d r e c e i v i n g r e g u l a r medical checkups. Twenty-five respondents (86.2%) r e p o r t e d that they ate r e g u l a r and n u t r i t i o u s meals. R e c e i v i n g l e s s s l e e p than needed i s r e p o r t e d by 15 respondents (51.7%) although an almost equal number of respondents (13 or 44.8%) s t a t e d they had s u f f i c i e n t s l e e p . In terms of r e p o r t e d s e l f - c a r e , on average, the p a r t i c i p a n t s f e l t they took f a i r l y good care of themselves. F i v e (17.2%) respondents f e l t they n e g l e c t e d t h e i r own h e a l t h . Table 8 H e a l t h Behaviours V a r i a b l e Mean P a r t i c i p a t e s i n r e g u l a r e x e r c i s e (0=no, 1=yes) .28 Caregiver has r e g u l a r checkups (0=no, 1=yes) .65 Amount of s l e e p 1.96 ( l = l e s s than needed, 3=right amount) Eat n u t r i t i o u s meals 2.86 (l=never, 2=sometime, 3=most of the time) Adequacy of s e l f - c a r e 2.04 0 = n e g l e c t s e l f , 2 = f a i r l y w e l l , 3=very w e l l ) 75 P a r t i c i p a t i o n i n and S a t i s f a c t i o n with P r e f e r r e d A c t i v i t i e s C a r e g i v i n g has been found to have negative e f f e c t s upon the c a r e g i v e r s ' a b i l i t y to p a r t i c i p a t e i n s o c i a l and l e i s u r e a c t i v i t e s at p r e f e r r e d l e v e l s (Grad & Sainsbury, 1963; Sanford, 1975; Marcus & Jaeger, 1982; Rabins et a l . , 1982; Chenoweth & Spencer, 1983; George, 1983;1984). The d e s c r i p t i v e data presented i n Table 9 support t h i s f i n d i n g . In terms of c o n t a c t with f r i e n d s and r e l a t i v e s , respondents, on average, t a l k e d on the phone with f a m i l y and f r i e n d s s l i g h t l y more than two to three times weekly and v i s i t e d with them s l i g h t l y l e s s than once per week. T h i r t e e n of 28 p a r t i c i p a n t s (46.4%) r e p o r t e d having s o c i a l v i s i t s l e s s than weekly. The mean l e v e l of s a t i s f a c t i o n with the amount of c o n t a c t with f r i e n d s and r e l a t i v e s i s 2.41, which l i e s between d i s s a t i s f i e d and s a t i s f i e d . Eighteen (62.1%) of the s u b j e c t s r e p o r t e d d i s s a t i s f a c t i o n . The respondents i n d i c a t e d t h a t , on average, they r a r e l y attended church, but would l i k e to a t t e n d church on an o c c a s i o n a l b a s i s . The mean l e v e l of attendance at s o c i a l groups or c l u b s i s 2.21, which l i e s between r a r e l y and o c c a s i o n a l l y . Ten (34.5%) of the p a r t i c i p a n t s r e p o r t e d that they never attended meetings of s o c i a l groups. Again, respondents i n d i c a t e d they attended such f u n c t i o n s l e s s o f t e n than they would l i k e to; seventeen of 28 s u b j e c t s (60.7%) r e p o r t e d they would l i k e to go to such meetings on an o c c a s i o n a l b a s i s . 76 Table 9 P a r t i c i p a t i o n In and S a t i s f a c t i o n with P r e f e r r e d A c t i v i t i e s V a r i a b l e Mean Frequency of telephone c o n t a c t 2.93*" Frequency of v i s i t s with f r i e n d s and f a m i l y 1.71* S a t i s f a c t i o n with c o n t a c t 2.41** Church attendance 2.10*** D e s i r e d church attendance 2.93*** Club attendance 2.21*** D e s i r e d c l u b attendance 2.93*** Hours per week spent i n p e r s o n a l hobbies .28 S a t i s f a c t i o n with time spent i n hobbies 2.45** Hours per week spent r e l a x i n g 10.22 S a t i s f a c t i o n with time spent r e l a x i n g 2.62** S a t i s f a c t i o n with S o c i a l A c t i v i t i e s S c a l e 7.48 * S c a l e : 1= l e s s than weekly, 2= at l e a s t weekly, 3= 2-3 times weekly, 4= d a i l y . ** S c a l e : 1= very d i s s a t i s f i e d , 2= d i s s a t i s f i e d , 3= s a t i s f i e d , 4= very s a t i s f i e d *** S c a l e : 1=never, 2=rarely 3 = o c c a s i o n a l l y , 4=regularly The low attendance at c l u b s was c l e a r l y evidenced i n the d i f f i c u l t y the i n v e s t i g a t o r had i n l o c a t i n g s u b j e c t s through l o c a l c a r e g i v e r support a s s o c i a t i o n s . The researcher q u e s t i o n s i f the low attendance of c a r e g i v i n g wives at the 77 support groups i s r e f l e c t i v e of t h e i r not being aware of support s e r v i c e s or t h e i r being unable to a v a i l themselves of them. For example, the wife may not be able to l o c a t e someone to remain with the husband while she attends the support group. Robertson and Reisner (1982) suggested that the low u t i l i z a t i o n of e x i s t i n g s e r v i c e s by the c a r e g i v e r s i n t h e i r study may have been due to the s e r v i c e s not being a c c e s s i b l e or not meeting the p e r c e i v e d needs of the dependents and t h e i r s u p p o r t e r s . I t may a l s o be that i f and when c a r e g i v i n g wives get some "time o f f " they may not choose to spend i t a t t e n d i n g a support group. Respondents averaged an a l a r m i n g l y low 0.28 hours weekly pursuing p e r s o n a l hobbies. Twenty-seven respondents r e p o r t e d that an average of 10.22 hours weekly were spent r e l a x i n g or t a k i n g i t easy. For both of these a c t i v i t i e s , the mean l e v e l of s a t i s f a c t i o n l a y between d i s s a t i s f i e d and s a t i s f i e d . The C a r e g i v e r ' s S a t i s f a c t i o n with S o c i a l A c t i v i t i e s S c a l e has a p o t e n t i a l range of 4 to 12. The range f o r t h i s sample was 4 to 12, with a mean of 7.48. T h i s i n d i c a t e s t h a t , d e s p i t e the degree to which the wives were s o c i a l l y r e s t r i c t e d , they were only moderately d i s s a t i s f i e d with t h e i r p a r t i c i p a t i o n i n p r e f e r r e d a c t i v i t i e s . I t may be that the wives' sense of duty and s o c i a l i z a t i o n i n t o the c a r e g i v i n g r o l e p r e c l u d e d them from e x p r e s s i n g more d i s s a t i s f a c t i o n . The l i t t l e amount of time the wives spent i n s o c i a l a c t i v i t i e s prevented them from u s i n g these d i v e r s i o n a l a c t i v i t i e s as a method of d e a l i n g with the hig h l e v e l of 78 s t r e s s they were e x p e r i e n c i n g . In a d d i t i o n , the l i m i t e d s o c i a l c o n t a c t may prevent the s u b j e c t s from b e n e f i t i n g from the p o s i t i v e aspects of s o c i a l support. However, the extent to which s o c i a l support a l l e v i a t e s c a r e g i v e r burden i s i n c o n c l u s i v e . For example, Z a r i t et a l . , (1980) r e p o r t e d that the frequency of f a m i l y v i s i t s was s i g n i f i c a n t l y r e l a t e d to l e v e l of burden experienced by c a r e g i v e r s of dependents with dementia. G i l h o o l y (1984), however, found that frequency of s o c i a l c o n t a c t was not c o r r e l a t e d with supporter morale or mental h e a l t h . Table 10 presents a comparison of the means on s e l e c t e d measures of s o c i a l w e l l - b e i n g f o r the study sample and the 2 comparison samples. In comparison to the g e n e r a l p o p u l a t i o n , the wives were markedly l e s s able to pursue s o c i a l and r e c r e a t i o n a l a c t i v i t i e s f o r a l l the i n d i c a t o r s of s o c i a l a c t i v i t y with the e x c e p t i o n of the number of phone c a l l s they r e c e i v e d . The d i f f e r e n c e s between the sample and the general p o p u l a t i o n are p a r t i c u l a r l y s t r i k i n g f o r time spent i n hobbies and r e l a x i n g . The g e n e r a l p o p u l a t i o n spent 45 times more time pursuing hobbies and approximately twice the amount of time r e l a x i n g . Normative data r e p o r t i n g that o l d e r Canadians were s l i g h t l y l e s s l i k e l y to p a r t i c i p a t e i n s o c i a l a c t i v i t i e s ( M i n i s t e r of Supply and S e r v i c e s , 1983) does not f u l l y account f o r the degree to which the wives i n the sample were s o c i a l l y r e s t r i c t e d . 79 Table 10 Comparison of Means on S o c i a l A c t i v i t i e s Measures: Study  Sample, General P o p u l a t i o n and Comparison C a r e g i v e r Sample. V a r i a b l e Study Sample Mean General P o p u l a t i o n Mean Ca r e g i v e r Sample Mean Frequency of Phone Contacts Frequency of V i s i t s 2.93 1.71 3.17 2.65 2.75 1 .91 ( l = l e s s than weekly, 2=at l e a s t weekly, 3= 2-3 times weekly, 4=weekly) Church Attendance 2.10 3.18 3.09 * Club Attendance 2.21 2.99 2.62 * (l=never, 2=rarely, 3 = o c c a s i o n a l l y , 4=regularly) 6.12 * Hours spent i n 0.28 Hobbies Hours spent 10.22 Rel a x i n g S a t i s f a c t i o n with 7.48 S o c i a l A c t i v i t i e s S c a l e a= one sample t - t e s t b= two sample t - t e s t *= s i g n i f i c a n t at p= .05 12.63 21.17 NA 1 0.02 8.06 NA •= not s i g n i f i c a n t at p= .05 80 The wives were s i g n i f i c a n t l y more s o c i a l l y r e s t r i c t e d i n terms of attendance at s o c i a l c l u b s and church and time spent in hobbies than George's c a r e g i v e r sample. T h i s i s c o n s i s t e n t with George's (1984) f i n d i n g s that women c a r e g i v e r s were more l i k e l y to p a r t i c i p a t e i n fewer s o c i a l a c t i v i t i e s and that spouses versus c h i l d r e n were more l i k e l y to g i v e up s o c i a l a c t i v i t i e s . G i l h o o l y (1984) a l s o suggested that male c a r e g i v e r s were l e s s s o c i a l l y i s o l a t e d . The sense of duty and g u i l t which i s experienced i f women share t h e i r burden of c a r e g i v i n g may have i n f l u e n c e d the amount of s e r v i c e s the sample accepted to enable them to pursue a c t i v i t i e s o u t s i d e the home. Des p i t e being more s o c i a l l y r e s t r i c t e d than George's c a r e g i v e r sample, the study wives d i d not re p o r t a s i g n i f i c a n t d i f f e r e n c e i n o v e r a l l s a t i s f a c t i o n with time spent i n p r e f e r r e d a c t i v i t i e s . T h i s supports the t h e s i s t hat the wives may have been h e s i t a n t to express more d i s s a t i s f a c t i o n . F i n a n c i a l Resources D e s c r i p t i v e data f o r f i n a n c i a l i n d i c a t o r s of w e l l - b e i n g p r o v i d e d i n Table 11 suggest l i t t l e economic burden among p a r t i c i p a n t s i n t h i s study. C o n s i d e r i n g the l i t e r a t u r e which d i s c u s s e s the v u l n e r a b l e f i n a n c i a l p o s i t i o n of e l d e r l y married women c a r i n g f o r an i l l spouse (Dulude, 1978; Equal O p p o r t u n i t i e s Commission, 1982; Rimmer, 1983; Walker, 1983), t h i s f i n d i n g i s somewhat unexpected. 81 Table 11 F i n a n c i a l I n d i c a t o r s V a r i a b l e Mean Own home (0=no, 1=yes) .66 Own o u t r i g h t .82 Asse t s s u f f i c i e n t to meet emergencies .93 Enough money f o r e x t r a s .90 Enough money f o r f u t u r e .85 How w e l l money covers b i l l s 2.93 (1=cannot meet b i l l s , 2=barely, 3=easily covers b i l l s ) Money meets needs 2.32 (l= p o o r l y , 2 = f a i r l y w e l l , 3=very we l l ) Finances compared to peers 2.04 (1=worse, 2=about the same, 3=better) P e r c e i v e d Economic Status S c a l e 9.96 Nineteen (65.5%) of the respondents owned t h e i r own home and 14 of these s u b j e c t s owned i t o u t r i g h t . T h i s i s c o n s i s t e n t with the s i t u a t i o n of the m a j o r i t y of ol d e r Canadians ( M i n i s t e r of Supply and S e r v i c e , 1983). One s u b j e c t d i d not complete the s u b j e c t i v e items (the l a s t 6) i n Table 11, t h e r e f o r e the sample s i z e f o r the f o l l o w i n g f i n a n c i a l i n d i c a t o r s d i s c u s s e d i s 28. Twenty-six (92.9%) p e r c e i v e d t h e i r f i n a n c i a l resources were s u f f i c i e n t to meet emergencies and pay household b i l l s . On average, p a r t i c i p a n t s f e l t they were f i n a n c i a l l y comparable to other 82 people t h e i r age and that t h e i r needs were being met f a i r l y w e l l to very w e l l . Of the 26 wives that completed the item determining concern about f u t u r e f i n a n c e s , only 4 had concerns. The wives' l a c k of concern r e g a r d i n g t h e i r f u t u r e f i n a n c i a l s i t u a t i o n may be due, i n p a r t , to t h e i r coping behaviour of l i v i n g from day to day and not t h i n k i n g about the f u t u r e . More than one-half of the female c a r e g i v e r s i n Marcus and Jaeger's (1982) study r e p o r t e d t h i s as a means of coping with the s t r e s s of c a r e g i v i n g . The s u b j e c t i v e items i n Table 11 comprise the P e r c e i v e d Economic S c a l e which has a p o t e n t i a l range of 3 to 12. The range f o r the s u b j e c t s was 4 to 12 with a mean of 9.96, i n d i c a t i n g t h a t the p a r t i c i p a n t s were q u i t e p o s i t i v e about t h e i r f i n a n c i a l s i t u a t i o n . Table 12 p r e s e n t s a comparison of sample means on measures of f i n a n c i a l resources f o r the study sample and the 2 comparison samples. In comparison to the general p o p u l a t i o n and George's c a r e g i v e r sample, the wives in t h i s study were s i g n i f i c a n t l y more p o s i t i v e about t h e i r f i n a n c i a l s i t u a t i o n . The v a s t l y d i f f e r e n t system of h e a l t h care funding i n Canada may have prevented the f i n a n c i a l h a r d s h i p expressed by the s u b j e c t s i n the American c a r e g i v e r sample. For example, B r i t i s h Columbia's Long Term Care Program funds s e r v i c e s such as homemaker a s s i s t a n c e and Adult Day Cares. P r i n g l e ' s (1982) Canadian study of c a r e g i v e r s of the e l d e r l y a l s o r e p o r t e d p o s i t i v e p e r c e p t i o n s i n terms of f i n a n c i a l r e s o u r c e s . 83 Table 12 Comparison of Means on F i n a n c i a l Measures: Study Sample,  General P o p u l a t i o n and Comparison C a r e g i v e r Sample V a r i a b l e Study Sample Mean General P o p u l a t i o n Mean Ca r e g i v e r Sample Mean a b P e r c e i v e d Economic Scale 9.96 6.47 9.09 * * a= one sample t - t e s t b= two sample t - t e s t *= s i g n i f i c a n t at p= .005 Cronbach's alpha was used to determine the r e l i a b i l i t y of the four s c a l e s f o r t h i s sample. A l l of the c o e f f i c i e n t s were w e l l w i t h i n the a c c e p t a b l e range of .60 to .80 (Lord & Novick, 1968). The s c a l e s and the cor r e s p o n d i n g alpha c o e f f i c i e n t s are as f o l l o w s : (1) C a r e g i v e r ' s S t r e s s Symptoms Scale .80 (2) A f f e c t Balance Scale .71 (3) P a r t i c i p a t i o n i n and S a t i s f a c t i o n with S o c i a l A c t i v i t i e s S c a l e .84 (4) P e r c e i v e d Economic Status S c a l e .91 Summary The r e s u l t s r e v e a l e d that the sample of o l d e r wives c a r i n g f o r a husband with Alzheimer's Disease were e x p e r i e n c i n g d e f i c i t s i n a l l the domains of w e l l - b e i n g with the e x c e p t i o n of f i n a n c i a l r e s o u r c e s . Comparison of the 84 sample means to a general p o p u l a t i o n sample and a more heterogenous group of c a r e g i v e r s r e v e a l e d that the d e f i c i t s i n the study wives' w e l l - b e i n g were, i n g e n e r a l , s i g n i f i c a n t l y more profound, p a r t i c u l a r l y i n the domains of mental h e a l t h and p a r t i c i p a t i o n i n and s a t i s f a c t i o n with s o c i a l a c t i v i t i e s . Normative data on the w e l l - b e i n g of o l d e r Canadian women i n general accounts, i n p a r t , f o r only some of these d i s c r e p a n c i e s . Thus, the r e s u l t s suggest t h a t the c a r e g i v i n g experience per se may have a negative impact on the c a r e g i v e r ' s w e l l - b e i n g and that o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease are p a r t i c u l a r l y at r i s k f o r such d e f i c i t s . C o n s i d e r i n g the prevalance of c h r o n i c i l l n e s s e s , mental s t r e s s symptoms, e s s e n t i a l l y negative a f f e c t , and the degree to which the c a r e g i v e r s ' s o c i a l a c t i v i t i e s were r e s t r i c t e d , one wonders how e f f e c t i v e l y the wives i n the sample were able to c a r r y on with 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 . The i d e n t i f i c a t i o n of who i s the c a r e g i v e r and who i s the dependent becomes d i f f i c u l t . The f i n d i n g s of the study are congruent with Fengler & Goodrich's (1978) summation that o l d e r wives of d i s a b l e d men are "hidden p a t i e n t s . " 85 CHAPTER FIVE Summary, C o n c l u s i o n s , I m p l i c a t i o n s and Recommendations f o r Future Research Summary The purpose of t h i s study was to document the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's D i s e a s e . The o l d e r wife has an i n c r e a s e d chance of f i n d i n g h e r s e l f i n t h i s c a r e t a k i n g r o l e due to the r i s i n g i n c i d e n c e of Alzheimer's Disease, p o p u l a r i t y of home care f o r the c h r o n i c a l l y i l l e l d e r l y , and s o c i a l i z a t i o n of women i n t o the c a r e g i v i n g r o l e . Because of nursing's concern with f a m i l y -centred c a r e , i t i s of i n t e r e s t to document the w e l l - b e i n g of fam i l y c a r e g i v e r s to ensure t h e i r r i g h t s and needs w i l l be co n s i d e r e d . The lack of r e s e a r c h i n t h i s area was a st i m u l u s for i n v e s t i g a t i o n of these concerns. W e l l - b e i n g was c o n c e p t u a l i z e d i n terms of four domains: p h y s i c a l h e a l t h , mental h e a l t h , p a r t i c i p a t i o n i n and s a t i s f a c t i o n with s o c i a l a c t i v i t i e s , and f i n a n c i a l r e s o u r c e s . A review of the l i t e r a t u r e s u b s t a n t i a t e d that c a r e g i v i n g may lead to d e f i c i t s i n w e l l - b e i n g , p a r t i c u l a r l y f o r the o l d e r c a r e g i v i n g w i f e . The study method was an e x p l o r a t o r y d e s c r i p t i v e survey. Twenty-nine women, 55 years of age and o l d e r , who were married to and r e s i d i n g with husbands diagnosed with Alzheimer's Disease comprised the sample. The s u b j e c t s were drawn from 13 agencies i n the Lower Mainland area of B r i t i s h 86 Columbia and Vancouver I s l a n d . The s u b j e c t s ranged i n age from 57 to 81 years, with an average age of 67 y e a r s . On average, the wives had been c a r i n g f o r t h e i r husbands f o r 42 months and were the s o l e c a r e g i v e r s . The s u b j e c t s completed a s e l f - a d m i n i s t e r d C a r e g i v e r Q u e s t i o n n a i r e that c o n s i s t e d of 78 quest i o n s designed to e l i c i t data r e g a r d i n g demographic i n f o r m a t i o n , the four domains of w e l l - b e i n g , and c a r e g i v e r h e a l t h behaviours. F o r t y - t h r e e of the qu e s t i o n s made up four m u l t i - i t e m s c a l e s and 35 of the q u e s t i o n s were a combination of open and f i x e d a l t e r n a t i v e items. A v a r i e t y of schemata were used to i n t e r p r e t the scores on the items. Completed q u e s t i o n n a i r e s were coded and p l a c e d on computer f i l e . D e s c r i p t i v e s t a t i s t i c s were used to analyze the data. A n a l y s i s of the data i n d i c a t e d that the s u b j e c t s had d e f i c i t s i n a l l the domains of w e l l - b e i n g with the exc e p t i o n of f i n a n c i a l r e s o u r c e s . In terms of p h y s i c a l h e a l t h , twelve (41.4%) of the c a r e g i v e r s r e p o r t e d that a v a r i e t y of h e a l t h problems had reappeared or worsened i n the past s i x months. Of these, a r t h r i t i s and hy p e r t e n s i o n were the most common. Reports of new h e a l t h concerns were a l s o noted by seven (24.1%) p a r t i c i p a n t s with a r t h r i t i s being the most common. On average, the wives r a t e d t h e i r h e a l t h between f a i r and good. T h i r t e e n (45%) of the s u b j e c t s r e p o r t e d using p s y c h o t r o p i c drugs, mainly to a s s i s t them to s l e e p . C a r e g i v e r h e a l t h behaviours were l e s s than d e s i r a b l e i n terms of having 87 r e g u l a r p h y s i c a l e x e r c i s e and adequate s l e e p . In terms of mental h e a l t h , the respondents' mean score on the C a r e g i v e r ' s S t r e s s Symptom Sc a l e was 11.14, i n d i c a t i n g a severe degree of s t r e s s . The o v e r a l l l i f e s a t i s f a c t i o n index r e v e a l e d that s u b j e c t s d e s c r i b e d t h e i r l i v e s as not s a t i s f y i n g t o f a i r l y s a t i s f y i n g . The mean on the A f f e c t Balance S c a l e was 5.20, i n d i c a t i n g the c a r e g i v e r s had only a very s l i g h t predominance of p o s i t i v e a f f e c t . The amount of time c a r e g i v e r s had to spend i n pursuing p r e f e r r e d a c t i v i t i e s was s t r i k i n g l y low. For example, the wives spent only 0.28 hours weekly pursuing hobbies and 10.22 hours r e l a x i n g . The mean on the C a r e g i v e r ' s S a t i s f a c t i o n with S o c i a l A c t i v i t i e s S c a l e was 7.48 i n d i c a t i n g the c a r e g i v e r s were moderately d i s s a t i s f i e d with t h e i r p a r t i c i p a t i o n i n p r e f e r r e d a c t i v i t i e s . The wives were e x p e r i e n c i n g no p e r c e i v e d d e f i c i t s i n terms of f i n a n c e s . Comparison of sample means on s e l e c t e d i n d i c a t o r s of w e l l - b e i n g with those of the general p o p u l a t i o n r e v e a l e d that the study sample had markedly g r e a t e r d e f i c i t s i n a l l domains of w e l l - b e i n g , again with the ex c e p t i o n of f i n a n c i a l r e s o u r c e s . These d i f f e r e n c e s were s t a t i s t i c a l l y s i g n i f i c a n t at p = .05. R e s u l t s were s i m i l a r when the sample was compared to another sample of c a r e g i v e r s and the m a j o r i t y of these d i f f e r e n c e s were a l s o s t a t i s t i c a l l y s i g n i f i c a n t at p = .05. 88 C o n c l u s i o n s The f o l l o w i n g are c o n c l u s i o n s to be drawn from the f i n d i n g s of the study: 1. The sample of o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease experienced major d e f i c i t s i n a l l domains of w e l l - b e i n g with the exce p t i o n of f i n a n c i a l r e s o u r c e s . 2. These d e f i c i t s were more pronounced than those experienced by the 2 comparison samples r e p r e s e n t a t i v e of the g e n e r a l p u b l i c and a more heterogeneous group of fa m i l y c a r e g i v e r s . 3. Normative data on the h e a l t h of o l d e r women i n general does not f u l l y account f o r the d e f i c i t s i n the study wives' w e l l - b e i n g or the d i f f e r e n c e s i n means between the study sample and the comparison samples. T h i s suggests that the c a r e g i v i n g experience per se may be r e s p o n s i b l e , i n p a r t , f o r the d e f i c i t s i n the study wives' w e l l - b e i n g , and that o l d e r women c a r i n g f o r husbands with Alzheimer's Disease are p a r t i c u l a r l y at r i s k f o r d e f i c i t s i n w e l l - b e i n g . I m p l i c a t ions The study r e s u l t s p rovide d i r e c t i o n f o r n u r s i n g p r a c t i c e . Of primary importance i s the need f o r nurses to reco g n i z e that the burden of c a r e g i v i n g , superimposed upon a g e - r e l a t e d changes i n o l d e r women, may r e s u l t i n major d e f i c i t s i n the w e l l - b e i n g of an o l d e r c a r e g i v i n g w i f e . C a r e g i v e r s must be viewed as c l i e n t s , i n t h e i r own r i g h t , 89 who r e q u i r e assessment on a frequent and r e g u l a r b a s i s . Many community home support programs do not f u l l y address t h i s need. For example, i n B r i t i s h Columbia, a l a r g e p r o p o r t i o n of demented e l d e r l y and t h e i r f a m i l y c a r e g i v e r s are cared f o r under the Long Term Care program. Acco r d i n g to people who work i n the program, the mandate of the Long Term Care program and the ca s e l o a d of the h e a l t h p r o f e s s i o n a l s working i n the program are such that frequent and r e g u l a r v i s i t s by Long Term Care s t a f f are not f e a s i b l e . The norm i s that the m a j o r i t y of these dependents and t h e i r f a m i l y c a r e g i v e r s are seen once to twice y e a r l y . More frequent v i s i t s by Long Term Care s t a f f or r e f e r r a l to Home Care Nursing f o r c l o s e r s u r v e i l l a n c e o f t e n only occurs as a r e s u l t of a c r i s i s i n the c a r e g i v i n g s i t u a t i o n . Thus, community home support programs should i n c o r p o r a t e the needs of f a m i l y c a r e g i v e r s i n t o the mandate of t h e i r programs and develop formal ways to pr o v i d e the frequent assessment and i n t e r v e n t i o n that f a m i l y c a r e g i v e r s r e q u i r e . The need to recog n i z e the problems experienced by c a r e g i v e r s i s a l s o of c r u c i a l importance to nurses working i n i n s t i t u t i o n a l s e t t i n g s . Dependents are o f t e n d i s c h a r g e d home without systematic enquiry about the f a m i l y c a r e g i v e r ' s d e s i r e and c a p a c i t y to pr o v i d e the c a r e . Discharge pla n n i n g f o r a dependent should i n v o l v e a thorough assessment of the c a r e g i v e r ' s w e l l - b e i n g and c a p a c i t y to provide the r e q u i r e d c a r e . F u r t h e r n u r s i n g a c t i o n s may i n v o l v e being an advocate fo r the c a r e g i v e r to ensure that a p p r o p r i a t e community home 90 support s e r v i c e s have been arranged. The study r e s u l t s p rovide d i r e c t i o n as to the nature of n u r s i n g assessments and i n t e r v e n t i o n s that c o u l d be conductd d u r i n g v i s i t s with the c a r e g i v e r . C o n s i d e r i n g the prevalence of c h r o n i c p h y s i c a l problems among the study wives, n u r s i n g assessments should determine the presence of such problems. I n t e r v e n t i o n s s p e c i f i c to the c h r o n i c i l l n e s s ( e s ) the wife i s e x p e r i e n c i n g c o u l d then be i n s t i t u t e d . For example, wives with a r t h r i t i s c o u l d be taught a p p r o p r i a t e body mechanics to prevent s t r e s s on body j o i n t s while women with c a r d i o v a s c u l a r problems c o u l d be c o u n s e l l e d r e g a r d i n g matters such as t h e i r d i e t and me d i c a t i o n s . Knowing that the r a t e of p s y c h o t r o p i c drug use i s high among c a r e g i v i n g wives, the nurse i s d i r e c t e d to monitor the c a r e g i v e r ' s use of such drugs. I n t e r v e n t i o n s c o u l d i n v o l v e t e a c h i n g the wife techniques of s t r e s s r e d u c t i o n and non-pharmaceutical means to p o t e n t i a t e s l e e p . The study r e s u l t s i n d i c a t e d that symptoms of mental h e a l t h s t r e s s were exceedingly high among the s u b j e c t s . Thus, nurses c o u l d undertake assessment f o r symptoms of s t r e s s , p a r t i c u l a r l y f e e l i n g s of being overwhelmed, t e n s i o n , and worry. D i f f i c u l t y g e t t i n g to and s t a y i n g a s l e e p i s a another major s t r e s s symptom that needs to be a s c e r t a i n e d by the nurse. C o n s i d e r i n g that the a f f e c t of the study wives was only s l i g h t l y p o s i t i v e , nurses should assess c a r e g i v e r a f f e c t with p a r t i c u l a r a t t e n t i o n to f e e l i n g s of anger, impatience, and d e p r e s s i o n . 91 Nursing v i s i t s can p r o v i d e the wife with the o p p o r t u n i t y to express emotions, such as those d e s c r i b e d above, to a non-judgemental person. T h i s may a s s i s t i n l e s s e n i n g the burden of these uncomfortable emotions. A s s i s t i n g the wife to understand anger as a r e a c t i o n to f r u s t r a t i o n i s of p a r t i c u l a r importance. The wife c o u l d be a s s i s t e d to l e a r n techniques to minimize f r u s t r a t i o n such as p h y s i c a l e x e r c i s e , imagery, and s h a r i n g f e e l i n g s with a c o n f i d a n t e . E f f e c t i v e l y d e a l i n g with anger w i l l h e l p i n t e r r u p t the v i c i o u s c y c l e of a n g e r / g u i l t and may prevent the anger from being used d e s t r u c t i v e l y . The wife needs to understand that f e e l i n g s of g u i l t are normal and may o f t e n be r e l a t e d to having expressed anger towards the spouse. I n t e r v e n t i o n s r e l a t e d to e x p r e s s i o n of d e p r e s s i v e f e e l i n g s may i n v o l v e a s s i s t i n g the wife to acknowledge and g r i e v e the m u l t i p l e l o s s e s she i s i n c u r r i n g . An important n u r s i n g i n t e r v e n t i o n r e g a r d i n g a l l the emotions d i s c u s s e d above i s to h e l p the wife a r t i c u l a t e what aspect of the c a r e g i v i n g s i t u a t i o n i s r e s u l t i n g i n these emotions. S p e c i f i c p r o b l e m - s o l v i n g techniques to a l t e r the i d e n t i f i e d a s p e c t ( s ) of the c a r e g i v i n g s i t u a t i o n c o u l d then be i n s t i t u t e d . The study r e s u l t s i n d i c a t e d t h at some wives may d e r i v e s a t i s f a c t i o n and p r i d e from aspects of the c a r e g i v i n g s i t u a t i o n , such as s o l v i n g problems r e l a t e d to the care of the husband. T h i s can be explored with the wife and the w i f e ' s c a r e g i v i n g e f f o r t s acknowledged. D i s c u s s i o n of the 92 p o s i t i v e a s p e c t s of c a r e g i v i n g may he l p to balance the negative emotions. A n a l y s i s of the r e s e a r c h data p e r t a i n i n g to the study wives' h e a l t h behaviours i n d i c a t e d that the demands of c a r e g i v i n g may exacerbate the g e n e r a l l y poor h e a l t h p r a c t i c e s of o l d e r women. Nurses need to enquire as to the wife's h e a l t h behaviours such as r e g u l a r e x e r c i s e , annual medical checkups, and o b t a i n i n g adequate s l e e p . C a r e g i v e r s r e q u i r e education r e g a r d i n g the importance of such h e a l t h behaviours. The wives must understand that a t t e n t i o n to t h e i r own needs w i l l improve t h e i r w e l l - b e i n g , which i n turn w i l l b e t t e r equip them to cope with the demands of c a r e g i v i n g . D i r e c t e d by the study r e s u l t s to view c a r e g i v e r s as s o c i a l l y r e s t r i c t e d , the nurse can determine the c a r e g i v e r ' s p a r t i c i p a t i o n i n and s a t i s f a c t i o n with p r e f e r r e d a c t i v i t i e s such as phone c a l l s and v i s i t s from f r i e n d s and attendance at s o c i a l c l u b s or groups. Of p a r t i c u l a r importance i s the need f o r the nurse to assess the amount of time the c a r e g i v e r has to pursue hobbies and to r e l a x . A primary n u r s i n g i n t e r v e n t i o n i n terms of s o c i a l h e a l t h i s to encourage the wife to seek rewards and r e c o g n i t i o n o u t s i d e the immediate c a r e g i v i n g e xperience. S e r v i c e s c o u l d be arranged such that the wife i s pro v i d e d with time t o pursue hobbies, r e l a x , and p a r t i c i p a t e i n p r e f e r r e d a c t i v i t i e s . The nurse can inform the wife of a v a i l a b l e home support s e r v i c e s such as a d u l t day care programs f o r the husband, r e s p i t e and homemaker s e r v i c e s , and 93 c o o r d i n a t e these s e r v i c e s to a s s i s t the c a r e g i v i n g w i f e . The apparent l a c k of f i n a n c i a l h a r d s h i p experienced by the c a r e g i v e r s may enable them to use some of t h e i r f i n a n c i a l r e sources to fund a d d i t i o n a l support s e r v i c e s . If a s u i t a b l e c a r e g i v e r support group i s a v a i l a b l e , the nurse can a s s i s t the wife to arrange ssupport s e r v i c e s so that she can a t t e n d . D i s c u s s i n g emotions and concerns with others who thoroughly understand the s i t u a t i o n communicates empathy and a f e e l i n g t h a t the c a r e g i v e r i s not alone i n her s t r u g g l e s . I t a l s o p r o v i d e s an environment i n which c a r e g i v e r s serve as r o l e models f o r each other as they r e l a t e the v a r i e d ways they have lea r n e d to cope. The r e c o g n i t i o n and mutual support the c a r e g i v e r s gain from each other may have a p o s i t i v e e f f e c t on t h e i r s e l f - e s t e e m . For many c a r e g i v e r s , a t t e n d i n g the c a r e g i v e r support group may be an important s o c i a l o u t l e t . S o c i a l support can a l s o be p r o v i d e d through frequent v i s i t s from the nurse. In h i s / h e r endeavors to a s s i s t the c a r e g i v e r to be l e s s s o c i a l l y r e s t r i c t e d , the nurse must be s e n s i t i v e to the f a c t that the s o c i a l i z a t i o n p a t t e r n s of o l d e r women and the inherent sense of duty and g u i l t may r e s u l t i n many wives being h e s i t a n t to accept the supports they need to pursue p r e f e r r e d a c t i v i t i e s . The nurse may need to e x p l o r e the t h i s phenomenon with the c a r e g i v i n g w i f e . C o n s i d e r i n g the d e f i c i t s i n the c a r e g i v e r s ' w e l l - b e i n g , i t cannot be assumed that o l d e r wives are able to p r o v i d e e f f e c t i v e care f o r the demented husbands. T h e r e f o r e , n u r s i n g 94 assessment needs t o a d d r e s s the q u a l i t y of c a r e t h a t i s b e i n g p r o v i d e d t o the p a t i e n t by the c a r e g i v i n g w i f e . Ongoing v i s i t s by the n u rse i n which the above assessments and i n t e r v e n t i o n s a r e f o l l o w e d w i l l a s s i s t the n u r se t o i d e n t i f y c a r e g i v e r s a t r i s k f o r pronounced d e f i c i t s i n w e l l - b e i n g . The nurse must be a b l e t o d e t e r m i n e when the demands of c a r e g i v i n g a r e g o i n g t o exceed th e c a r e g i v e r ' s p h y s i c a l and e m o t i o n a l c a p a c i t i e s . T h i s w i l l p r o v i d e the nurse w i t h a s t r o n g e r d a t a base upon which t o c o u n s e l the w i f e r e g a r d i n g the need f o r i n c r e a s e d home s u p p o r t s e r v i c e and/or i n s t i t u t i o n a l i z a t i o n of the husband. In c o n c l u s i o n , the c a r e g i v n g w i f e needs an advocate who i s c oncerned about her w e l l - b e i n g . The p r o f e s s i o n a l nurse can f u l f i l t h i s r o l e i n the f o l l o w i n g manner: 1. Nurses can a dvocate f o r improvements i n community r e s o u r c e s such t h a t they a r e d e s i g n e d t o e f f e c t i v e l y p r e v e n t d e f i c i t s i n c a r e g i v e r w e l l - b e i n g . 2. Nurses can o r g a n i z e and l e a d c a r e g i v e r s u p p o r t groups. 3. Nurses can i n f l u e n c e p u b l i c p o l i c y by e m p h a s i z i n g the need f o r c a u t i o n when c o n s i d e r i n g p o l i c y recommendations based upon the premise t h a t the o l d e r w i f e can s e r v e as a b a s i c p r o v i d e r f o r c a r e of the husband w i t h A l z h e i m e r ' s D i s e a s e i n the home. Recommendations f o r F u t u r e R e s e a r c h The f i n d i n g s of the study s t i m u l a t e s u g g e s t i o n s f o r f u r t h e r r e s e a r c h which a r e as f o l l o w s : 95 A l o n g i t u d i n a l study to determine what bearing c a r e g i v i n g has on the l i f e course of o l d e r wives c a r i n g f o r husbands with Alzheimer's D i s e a s e . S t u d i e s i n which the wife's w e l l - b e i n g can be c o r r e l a t e d t o the husband's l e v e l of impairment and v a r i o u s aspects of the c a r e g i v i n g s i t u a t i o n . S t u d i e s of t h i s design would a s s i s t i n c l a r i f y i n g i f , and to what exten t , these f a c t o r s i n f l u e n c e c a r e g i v e r w e l l - b e i n g . A study comparing the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease to a matched sample of o l d e r wives without 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 . Such a study may h e l p to c l a r i f y the extent to which the aging process i t s e l f c o n t r i b u t e s to d e f i c i t s i n w e l l - b e i n g . A study comparing the w e l l - b e i n g of o l d e r wives c a r i n g f o r husbands with Alzheimer's Disease to a matched sample of o l d e r wives c a r i n g f o r husbands with c o n d i t i o n s other than Alzheimer's Disease. Such a study may a s s i s t to f u r t h e r c l a r i f y the extent to which the nature of the i l l n e s s of the p a t i e n t i n f l u e n c e s c a r e g i v e r w e l l - b e i n g . Given the number of male spousal c a r e g i v e r s the i n v e s t i g a t o r encountered d u r i n g s u b j e c t r e c r u i t m e n t , a study should document the w e l l - b e i n g of o l d e r males c a r i n g f o r wives with Alzheimer's D i s e a s e . Program e v a l u a t i o n r e s e a r c h to determine the e f f e c t i v e n e s s of v a r i o u s support s e r v i c e s i n p o s i t i v e l y i n f l u e n c i n g c a r e g i v e r w e l l - b e i n g . S t u d i e s to examine i f the q u a l i t y of p a t i e n t care 96 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 i s a f f e c t e d b y t h e c a r e g i v e r ' s l e v e l o f w e l l - b e i n g . 8. R e s e a r c h t o d e v e l o p a r e l i a b l e a n d v a l i d t o o l t o s c r e e n f o r c a r e g i v e r s w h o a r e a t r i s k f o r d e f i c i t s i n w e l l - b e i n g a s a r e s u l t o f c a r e g i v i n g . 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Gerontologist, 19, 169-174. Sheldon, F. ( 1 9 8 2 ) . Supporting the supporters: Working with the r e l a t i v e s of patients with dementia. Age and Ageing, n_, 184-188. Sommers, T. ( 1 9 8 5 ) . Caregiving a woman's issue. Generations, F a l l , 9-13. S t a t i s t i c s Canada. ( 1 9 7 9 ) . Canada's e l d e r l y . One of a series from the 1976 census of Canada. Canada: Ministry of Supply and Services, Canada. Sussman, M.B. ( 1 9 7 9 ) . Social and Economic Supports and Family Environment for the E l d e r l y . F i n a l Report to Aministration on Ageing. Treas, C. ( 1 9 7 9 ) . Family considerations for the aged: Some so c i a l and demographic considerations. Gerontologist, _T7, 4 8 6 - 4 9 1 . Vorgna, D. ( 1 9 7 9 ) . Group treatment for wives of patients with Alzheimer's Disease. Social Work in Health Care, 5 ( 2 ) , 2 1 9 - 2 2 1 . Walker, A. ( 1 9 8 3 ) . Care for elderly people: a c o n f l i c t between women and the state. In J . Finch Sc D. Groves (Eds.), A Labour of love women work Sc caring. London: Routledge Sc Keegan Paul. 103 Ware, L., & Cooper, M. (1982). L i v i n g with Alzheimer's Disease: Family s t r e s s and coping mechanisms. Psychotherapy: Theory, Research and P r a c t i c e , 19, 472-481 . Watson, J . , & Seiden, H. (1984). Alzheimer's D i s e a s e : A c u r r e n t review. Canadian Family P h y s i c i a n , 30, 595- 599. Wasow, M. (1985). Chronic S c h i z o p h r e n i a and Alzheimer's Disease. J o u r n a l of Chronic Diseases, 38 (8), 711-716. Wheatley, V. (1980). R e l a t i v e s t r e s s . Community Care, (324), 22-23. Woods, A., Niederehe, G., & Fruge, E. (1985). Dementia a f a m i l y systems p e r s p e c t i v e . Generations, F a l l , 19-22. Z a r i t , S.H., Reever, K.E., & Bach-Peterson, J . (1980). R e l a t i v e s of the impaired e l d e r l y : C o r r e l a t e s of f e e l i n g s of burden. G e r o n t o l o g i s t , 20 (6), 649-655. Z a r i t , J.M., & Z a r i t , S.H. (1982). Measuring burden and support i n f a m i l i e s with Alzheimer's Disease e l d e r s . Paper presented at the 35th Annual S c i e n t i f i c Meeting of the G e r o n t o l o g i c a l S o c i e t y of America, Boston, Massachusetts, U n i t e d S t a t e s . 104 Appendix A C a r e g i v e r Q u e s t i o n n a i r e GENERAL INSTRUCTIONS: The q u e s t i o n n a i r e has been designed to be as easy to f i l l out as p o s s i b l e . In g e n e r a l , you w i l l only need to c i r c l e the number beside the best answers or f i l l i n a blank. T h i s i s not a t e s t , and there are no r i g h t or wrong answers. The q u e s t i o n s ask only f o r f a c t u a l i n f o r m a t i o n or f o r your o p i n i o n s . In order f o r the r e s e a r c h to be complete, please answer every q u e s t i o n . (1) How o l d are you? years of age (2) How many years of formal s c h o o l i n g have you completed? years of s c h o o l i n g (3) Which of the f o l l o w i n g best d e s c r i b e s you? 1. C u r r e n t l y employed 2. R e t i r e d 3. Housewife 4. Non-employed IF CURRENTLY EMPLOYED: Please d e s c r i b e your c u r r e n t p o s i t i o n and major job d u t i e s : IF RETIRED: Please d e s c r i b e your p o s i t i o n and major job d u t i e s f o r the job you had most of your l i f e . (4) I n c l u d i n g y o u r s e l f , how many people l i v e i n your household? people 105 (5) For each person i n your household, OTHER THAN YOURSELF, please l i s t h i s or her age, sex, and r e l a t i o n s h i p to you. AGE SEX CHILD SISTER/ GRAND- OTHER FRIEND PAID BROTHER CHILD RELATIVE HELP (6) How many c h i l d r e n have you had? c h i l d r e n (7) Not c o u n t i n g any c h i l d r e n who l i v e with you, how many of your c h i l d r e n l i v e w i t h i n an hour's d r i v e ? c h i l d r e n (8) How long have you been the c a r e g i v e r f o r your husband? months (9) Are you the s o l e c a r e g i v e r f o r your husband? 1 . No 2. Yes (10) How many times have you seen a doctor d u r i n g the past s i x months, not cou n t i n g the times you stayed overnight i n the h o s p i t a l ? times (11) How many days a l t o g e t h e r i n the past s i x months were you i n a h o s p i t a l f o r h e a l t h problems? days i n h o s p i t a l (12) During the past s i x months, how many days were you so s i c k t h a t you were unable to c a r r y on your usual a c t i v i t i e s — s u c h as working around the house or going to work? days 106 (13) Have any l o n g - s t a n d i n g h e a l t h problems reappeared or gotten worse i n the l a s t s i x months? 1 . No 2. Yes IF YES: please s t a t e the name of the problem(s) (14) Have you developed any new h e a l t h problems i n the past s i x months? 1 . No 2. Yes IF YES: please s t a t e the name of the problem(s) (15) Are you c u r r e n t l y t a k i n g any m e d i c a t i o n s — e i t h e r p r e s c r i p t i o n medicines or over-the-counter d r u g s — t o calm you down, r a i s e your s p i r i t s , or to h e l p you sleep? Include medicines you take o c c a s i o n a l l y , as w e l l as those you take r e g u l a r l y . 1 . No 2. Yes IF YES: What drugs are you t a k i n g , even on an o c c a s i o n a l b a s i s , and what i s the purpose of each drug? NAME OF DRUG CALM YOU DOWN RAISE YOUR SPIRITS HELP YOU SLEEP (16) Has your p a t t e r n of a l c o h o l consumption changed in the past s i x months? 1 . No 2. Yes IF YES, how? 1 07 (17) How would you r a t e your o v e r a l l h e a l t h at the present t i m e — e x c e l l e n t , good, f a i r , or poor? 1. E x c e l l e n t 2. Good 3. F a i r 4. Poor (18) Is your h e a l t h any b e t t e r now, about the same, or worse than i t was f i v e years ago? 1. B e t t e r 2. About the same 3. Worse (19) How much do h e a l t h problems stand i n the way of your doing the things you want to do--not at a l l , a l i t t l e (some), or a great deal? 1. Not at a l l 2. A l i t t l e (some) 3. A great deal (20) How o f t e n would you say you worry about t h i n g s — v e r y o f t e n , f a i r l y o f t e n , or h a r d l y ever? 1. Very o f t e n 2. F a i r l y o f t e n 3. Hardly ever (21) In g e n e r a l , would you say that most of the time you are in very good s p i r i t s , good s p i r i t s , low s p i r i t s , or very low s p i r i t s ? 1. Very good s p i r i t s 2. Good s p i r i t s 3. Low s p i r i t s 4. Very low s p i r i t s (22) Do you wake up f r e s h and r e s t e d i n the mornings? (23) Is your l i f e f u l l of t h i n g s that keep you i n t e r e s t e d ? (24) Does i t seem that no one understands you? (25) Have you had p e r i o d s of days, weeks, or months where you c o u l d n ' t take care of t h i n g s because you c o u l d n ' t "get going?" (26) Is your s l e e p f i t f u l and d i s t u r b e d ? (27) Do you f e e l weak a l l over much of Yes No Yes No Yes No Yes No Yes "No Yes No 108 the time? (28) Are you t r o u b l e d by headaches? Yes No (29) Do you sometimes have d i f f i c u l t y i n Yes No keeping your balance while walking? (30) Are you sometimes t r o u b l e d by your heart Yes No pounding or shortness of breath? (31) Do you sometimes f e e l hot a l l over? Yes No (32) Do you sometimes have p e r i o d s of great Yes No r e s t l e s s n e s s where you cannot s i t s t i l l very long? (33) Would you say your a p p e t i t e i s good? Yes No (34) Are you the worrying type? Yes No (35) Are you sometimes bothered by nervousness Yes No or tenseness? (36) Do you ever have t r o u b l e i n g e t t i n g or Yes No s t a y i n g asleep? (37) Are you bothered by a c i d stomach? Yes No (38) Are you " o c c a s i o n a l l y " bothered by Yes No " c o l d sweats?" (39) Are you o c c a s i o n a l l y bothered by Yes No f e e l i n g s of g u i l t ? (40) Do you sometimes f e e l overwhelmed by Yes No r e s p o n s i b i l i t y ? (41) Do you have p e r s o n a l worries that are Yes No g e t t i n g you down p h y s i c a l l y ? (42) Do you f e e l somewhat alone, even among Yes No f r i e n d s ? (43) Do you sometimes f i n d y o u r s e l f wondering Yes No i f anything i s worthwhile anymore? (44) Do you p a r t i c i p a t e i n any r e g u l a r e x e r c i s e Yes No or s p o r t s a c t i v i t y ? (45) Do you go to the doctor f o r check-ups on Yes No a r e g u l a r b a s i s ? 109 (46) Would you say that g e n e r a l l y you get l e s s s l e e p than you need, more s l e e p than you need, or j u s t about the r i g h t amount? 1. Less than needed 2. More than needed 3. About the r i g h t amount (47) Would you say that you eat balanced n u t r i t i o u s m e a l s — most of the time, some of the time, or h a r d l y ever? 1. Most of the time 2. Some of the time 3. Hardly ever (48) In g e n e r a l , how w e l l would you say that you take care of y o u r s e l f — v e r y w e l l , f a i r l y w e l l , or would you say that you neglect your own h e a l t h and well-being? 1. Very w e l l 2. F a i r l y w e l l 3. Neglect own h e a l t h During the past few weeks d i d you ever f e e l : (49) - - p a r t i c u l a r l y e x c i t e d or i n t e r e s t e d Yes No i n something? (50) — s o r e s t l e s s that you c o u l d n ' t s i t Yes No long i n a c h a i r ? (51) — p r o u d because someone complimented you Yes No on something you had done? (52) --very l o n e l y or remote from other people? Yes No (53) — p l e a s e d about having accomplished Yes No something? (54) --bored? Yes No (55) --angry or impatient? Yes No (56) --on top of the world? Yes No (57) --depressed or very unhappy? Yes No (58) - - t h a t t h i n g s were going your way? Yes No (59) — u p s e t because someone c r i t i c i z e d you? Yes No 1 10 (60) Taking a l l t h i n g s together, how would you say you f i n d l i f e these days--very s a t i s f y i n g , f a i r l y s a t i s f y i n g , or not s a t i s f y i n g ? 1. Very s a t i s f y i n g 2. F a i r l y s a t i s f y i n g 3. Not s a t i s f y i n g (61) About how o f t e n do you t a l k on the telephone with f r i e n d s and r e l a t i v e s f o r SOCIAL purposes? 1. D a i l y 2. 2-3 times per week 3. At l e a s t onece a week 4. Less than once a week (62) About how o f t e n do you v i s i t with f r i e n d s and r e l a t i v e s f o r s o c i a l p u r p o s e s — t h a t i s , how o f t e n do you go to v i s i t them, they come to v i s i t you, or even go out together? 1 . D a i l y 2. 2-3 times per week 3. At l e a s t once per week 4. Less than once per week (63) How s a t i s f i e d are you with the amount ot c o n t a c t you have with f r i e n d s and r e l a t i v e s f o r s o c i a l purposes? Would you say that you are very s a t i s f i e d , s a t i s f i e d , d i s s a t i s f i e d , or very d i s a t i s f i e d ? 1. Very s a t i s f i e d 2. S a t i s f i e d 3. D i s s a t i s f i e d 4. Very d i s s a t i s f i e d (64) How o f t e n do you atte n d church or r e l i g i o u s s e r v i c e s — r e g u l a r l y , o c c a s i o n a l l y , r a r e l y , or never? 1. R e g u l a r l y 2. O c c a s i o n a l l y 3. R a r e l y 4. Never (65) How o f t e n would you l i k e to a t t e n d church or r e l i g i o u s s e r v i c e s — r e g u l a r l y , o c c a s i o n a l l y , r a r e l y , or never? 1. R e g u l a r l y 2. O c c a s i o n a l l y 3. Rarely 4. Never 111 (66) How o f t e n do you a t t e n d meetings of s o c i a l groups, c l u b s , or c i v i c o r g a n i z a t i o n s — r e g u l a r l y , o c c a s i o n a l l y , r a r e l y , or never? 1. R e g u l a r l y 2. O c c a s i o n a l l y 3. Rarely 4. Never (67) How o f t e n would you l i k e to a t t e n d meetings of s o c i a l groups, c l u b s , or c i v i c o r g a n i z a t i o n s — r e g u l a r l y , o c c a s i o n a l l y , r a r e l y , or never? 1. R e g u l a r l y 2. O c c a s i o n a l l y 3. R a r e l y 4. Never (68) About how many hours a week do you spend on r e c r e a t i o n or p e r s o n a l hobbies? hours (69) How s a t i s f i e d are you with the amount of time you spend i n r e c r e a t i o n a l a c t i v i t i e s or on your p e r s o n a l h o b b i e s — v e r y s a t i s f i e d , s a t i s f i e d , d i s s a t i s f i e d , or very d i s s a t i s f i e d ? 1 . Very s a t i s f i e d 2. S a t i s f i e d 3. D i s s a t i s f i e d 4. Very d i s s a t i s f i e d (70) About how many hours a week do you spend r e l a x i n g or j u s t t a k i n g i t easy? hour s (71) How s a t i s f i e d are you with the amount of time you spend r e l a x i n g or j u s t t a k i n g i t e a s y — v e r y s a t i s f i e d , s a t i s f i e d , d i s s a t i s f i e d , or very d i s s a t i s f i e d ? 1. Very s a t i s f i e d 2. S a t i s f i e d 3. D i s s a t i s f i e d 4. Very d i s s a t i s f i e d (72) Do you own your own home? 1 . No 2. Yes 1 12 IF YES: do you own i t o u t r i g h t or are you s t i l l paying a mortgage? 1. own o u t r i g h t 2. s t i l l paying (73) Are your a s s e t s and f i n a n c i a l resources s u f f i c i e n t to meet medical and household emergencies? 1 . No 2. Yes (74) Are your expenses so heavy that you cannot meet your b i l l s (or household expenses) or can you b a r e l y meet your b i l l s , or are your b i l l s no problem to you? 1. Cannot meet my b i l l s 2. Can b a r e l y meet my b i l l s 3. B i l l s are no problem (75) How w e l l do you th i n k you (and your f a m i l y ) are doing f i n a n c i a l l y as compared to other people your a g e -b e t t e r , about the same, or worse? 1. B e t t e r 2. About the same 3. Worse (76) How w e l l does the amount of money you have take care of your n e e d s — v e r y w e l l , f a i r l y w e l l , or p o o r l y ? 1 . Very w e l l 2. F a i r l y w e l l 3. P o o r l y (77) Do you u s u a l l y have enough to buy those l i t t l e " e x t r a s " — t h a t i s , those sm a l l l u x u r i e s ? 1 . No 2. Yes (78) Do you f e e l that you w i l l have enough f o r your needs i n the f u t u r e ? 1. No 2. Yes THIS IS THE END OF THE QUESTIONNAIRE. PLEASE ENSURE YOU HAVE ANSWERED ALL THE QUESTIONS. MY RESEARCH COULD NOT BE COMPLETE WITHOUT YOUR PARTICIPATION. 1 1 3 Appendix B Sc o r i n g of Q u e s t i o n n a i r e The manner i n which the four s c a l e s i n the q u e s t i o n n a i r e are scored i s as f o l l o w s . In completing the C a r e g i v e r S t r e s s Symptom S c a l e , respondents i n d i c a t e e i t h e r yes or no to 21 items. A score of 0 i s assig n e d to the a f f i r m a t i v e responses and a +1 to negative responses, r e s u l t i n g i n a p o s s i b l e range of 0 to 21. An a f f i r m a t i v e answer to each of the items i s i n d i c a t i v e of s t r e s s . The higher the number, the stronger the evidence (George, 1983). The A f f e c t Balance Scale comprises f i v e items which tap p o s i t i v e a f f e c t and f i v e items which tap negative a f f e c t . Respondents are asked to agree or d i s a g r e e with the 10 statements. Negative responses are as s i g n e d a score of 0 arid a f f i r m a t i v e responses, a score of +1. Thus, the s c a l e has a p o t e n t i a l range of 0 to 10. A score of 0 re p r e s e n t s t o t a l l y negative a f f e c t , a score of 10 i n d i c a t e s t o t a l l y p o s i t i v e a f f e c t , and a score of 5 re p r e s e n t s a balance between the two (George, 1983). Three items concerning s a t i s f a c t i o n with time spent i n p r e f e r r e d a c t i v i t i e s comprise the S o c i a l A c t i v i t i e s S c a l e . A score of +1, +2, +3 and +4 i s assig n e d to the responses of "very d i s s a t i s f i e d , " " d i s s a t i s f i e d , " " s a t i s f i e d , " and "very s a t i s f i e d , " r e s p e c t i v e l y , thus the s c a l e has a p o t e n t i a l range of 4 to 12. A score w i t h i n the lower ranges of the s c a l e i n d i c a t e s d i s s a t i s f a c t i o n , while scores i n the upper ranges of the s c a l e i n d i c a t e s a t i s f a c t i o n (George, 1983). 1 1 4 Six items e l i c i t i n g the respondents' o p i n i o n s about t h e i r economic s t a t u s comprise a P e r c e i v e d Economic Status S c a l e . Three of the items r e q u i r e the respondent to answer e i t h e r yes or no. A response i n the negative i s assigned a score of 0 and an a f f i r m a t i v e response, a score of +1. The other three q u e s t i o n s r e q u i r e respondents to i n d i c a t e t h e i r p e r c e p t i o n s on a t h r e e - p o i n t s c a l e . Negative p e r c e p t i o n s are scored with a +1 and p o s i t i v e p e r c e p t i o n s r e c e i v e a score of +3. Thus, the s c a l e has a p o t e n t i a l range of 3 to 12. Scores i n the range of 3 to 6 i n d i c a t e negative p e r c e p t i o n s of economic s t a t u s while those i n the 9 to 12 range i n d i c a t e p o s i t i v e p e r c e p t i o n s (George, 1983). 1 15 Appendix C L e t t e r of Information and Consent THE WELL-BEING OF OLDER WIVES CARING FOR HUSBANDS WITH ALZHEIMER'S DISEASE My name i s Pam Brown. I am a r e g i s t e r e d nurse who i s working on a Master's degree i n n u r s i n g at the U n i v e r s i t y of B r i t i s h Columbia. For my Master's t h e s i s I am i n t e r e s t e d i n l e a r n i n g about the impact that c a r i n g f o r a husband with Alzheimer's Disease has on the w e l l - b e i n g of the w i f e . My i n t e r e s t i n t h i s developed when I was working as a community h e a l t h nurse, and I c o u l d f i n d l i t t l e i n f o r m a t i o n about t h i s matter. I f you are a wife over f i f t y - f i v e years of age who i s c u r r e n t l y c a r i n g f o r , and have been c a r i n g f o r a p e r i o d of at l e a s t s i x months, a husband who has Alzheimer's Disease, I would l i k e you to p a r t i c i p a t e i n the study by f u l l y completing the atta c h e d q u e s t i o n n a i r e . The q u e s t i o n n a i r e w i l l take approximately twenty minutes of your time to complete. No i d e n t i f y i n g i n f o r m a t i o n i s r e q u i r e d on the q u e s t i o n n a i r e , and anonymity i s guaranteed. I w i l l communicate to you a summary of the r e s u l t s i f you are i n t e r e s t e d . You are under no o b l i g a t i o n to p a r t i c i p a t e i n t h i s study. Whether you p a r t i c i p a t e or not, w i l l have no e f f e c t whatsoever on the present or f u t u r e h e a l t h care s e r v i c e s you or your husband may r e c e i v e . I a n t i c i p a t e that by l e a r n i n g about the w e l l - b e i n g of wives c a r i n g f o r husbands with Alzheimer's Disease, I can 

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