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Comparison of restraint practices for persons with dementia residing in and outside special care units… McConnell-Barker, Michelle 2000

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Comparison of Restraint Practices for Persons with Dementia Residing In and Outside Special Care Units in British Columbia By Michelle McConnell-Barker B.A., Waterloo University, 1995 A Thesis submitted to the Department of Anthropology and Sociology at The University of British Columbia in partial fulfillment to the requirements for the degree of MASTER OF ARTS In THE FACULTY OF GRADUATE STUDIES (Department of Anthropology and Sociology) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August, 2000 © Michelle. M^onneJl-lWker, looo In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver, Canada r Department DE-6 (2/88) A B S T R A C T The excessive use of chemical and physical restraints in intermediate care facilities has been a subject of study since the early eighties, and has produced several explanations for why restraint use continues to be practiced. One of the primary reasons often cited is that restraints are used to control "problematic behavior" commonly exhibited by a person suffering from dementia. The focus of the proposed project is to analyze whether restraint practices for residents with moderate to severe dementia differ between Special Care Units and integrated units within long term care facilities. The main objective of the study is to demonstrate whether seniors with dementia residing in Special Care Units will be less likely to encounter physical and chemical restraints than demented residents living within an integrated facility. This objective explores the assumption that Special Care Units were designed to meet the needs of residents with dementia, and therefore, care providers should be more accepting of deviant behaviours. The findings revealed that the more severe the level of memory impairment the more likely a resident would be placed in a Special Care Unit. Once located in these Special Care Units, residents were more likely to experience physical and chemical restraints than their counterparts in integrated care units. T A B L E O F C O N T E N T ABSTRACT \\ ACKNOWLEDGEMENTS I % LIST OF TABLES. I ^  LIST OF FIGURES VM» ' CHAPTER 1 - INTRODUCTION. 1 CHAPTER 2 - REVIEW OF LITERATURE 9 2.1 Integrated and Segregated Care Units. 10 2.2 Behavioral Problems 15 2.3 Physical and Chemical Restraints 19 2.4 Limitations/Conclusion 25 CHAPTER 3 - PROGRAM EVALUATION 28 3.1 Definition of a Program Evaluation 28 3.2 Arguments in Favour or Against the Studies Hypotheses 30 3.3 Conclusion 38 CHAPTER 4 - METHODOLOGY 40 4.1 Conclusion 54 CHAPTER 5 - DATA ANALYSIS 55 5.7 Section 1: Univariate Statistics 55 5.2 Section 2: Bivariate Relationships. 62 5.3 Section 3: Multivariate Statistics 90 5.4 Conclusion 94 CHAPTER 6 - DISCUSSION AND CONCLUSION 99 6.1 Research Objectives 99 6.2 A Comparative Analysis of Research Findings 102 6.3 Limitations 109 6.4 Program Evaluations Ill 6.5 Contributions and Ideas for Future Research 112 BIBLIOGRAPHY 117 APPENDIX A 123 LIST OF TABLES Table 1. Predicted Cases of Dementia in Canada 3 Table 2. Percentage Breakdown of Resident Population with Dementia by Severity of Dementia and Type of Ward 19 Table 3. Physical Restraint use in British Columbia Long Term Care Facilities 21 Table 4. Intermediate Care Facility Instruments , 44 Table 5. Instruments from the Intermediate Care Facility Project 50 Table 6. Percentage Breakdown of Type of Dementia in British Columbia's Long-term Care Facilities 56 Table 7. Percentage Breakdown of Resident Population in British Columbia's Long-term Care Facilities by Level of Dementia 56 Table 8. Percentage Breakdown of Type of ward British Colulmbia's Resident Population with Dementia Reside In 57 Table 9. Percentage Breakdown of Residents with Dementia's Gender that Reside In Long-term Care Facilities In British Columbia 57 Table 10. Percentage Breakdown of Age Group of Residents with Dementia in British Columbia's Long-term Care Facilities 58 Table 11. Percentage Breakdown of Level of Education of Residents with Dementia in British Columbia's Long-term Care Facilities 59 Table 12. Percentage Breakdown of Current Marital Status of Residents with Dementia in British Columbia's Long-term Care Facilities 60 Table 13. Percentage Breakdown of Combined Annual Income of Residents with Dementia Residing British Columbia's Long-term Care Facilities 61 Table 14. Percentage Breakdown of Resident Population with Dementia by Age of Resident and Level of Dementia in British Columbia's Long-term Care Facilities 63 Table 15. Percentage Breakdown of Residents Population with Dementia by Gender of Resident and Level of Dementia in British Columbia's Long-term Care Facilities 63 Table 16. Percentage Breakdown of Resident Population with Dementia by Marital Status and Level of Dementia in British Columbia's Long-term Care Facilities 64 Table 17. Percentage Breakdown of Resident Population with Dementia by Level of Education and Level of Dementia in British Columbia's Long-term Care Facilities ...65 Table 18. Percentage Breakdown of Resident Population with Dementia by Annual Income and Level of Dementia in British Columbia's Long-term Care Facilities 66 Table 19. Percentage Breakdown of Resident Population with Dementia by Facility Type and Level of Dementia in British Columbia's Long-term Care Facilities 67 Table 20. Percentage Breakdown of Resident Population with Dementia by Physical Aggressive Behaviours and Level of Dementia in British Columbia's Long-term Care Facilities 69 Table 21. Percentage Breakdown of Resident Population with Dementia by General Restlessness and Level of Dementia in British Columbia's Long-term Care Facilities 70 Table 22. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and Level of Dementia in British Columbia's Long-term Care Facilities..72 Table 23. Percentage Breakdown of Resident Population with Dementia by Wandering and Level of Dementia in British Columbia's Long-term Care Facilities 73 Table 24. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding and Level of Dementia in British Columbia's Long-term Care Facilities 74 Table 25. Percentage Breakdown of Resident Population with Dementia by Physical Aggression and Facility Type in British Columbia's Long-term Care Facilities 75 Table 26. Percentage Breakdown of Resident Population with Dementia by General restlessness and Facility Type in British Columbia's Long-term Care Facilities 75 Table 27. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and Facility Type in British Columbia's Long-term Care Facilities 76 Table 28. Percentage Breakdown of Resident Population with Dementia by Wandering and Facility Type in British Columbia's Long-term Care Facilities ...77 Table 29. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding and Facility Type in British Columbia's Long-term Care Facilities78 Table 30. Percentage Breakdown of Resident Population with Dementia by Physical Aggression and use of Physical Restraint in British Columbia's Long-term Care Facilities 79 V Table 31. Percentage Breakdown of Resident Population with Dementia by General Restlessness and use of Physical Restraints in British Columbia's Long-term Care Facilities 80 Table 32. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and use of Physical Restraints in British Columbia's Long-term Care Facilities 81 Table 33. Percentage Breakdown of Resident Population with Dementia by Pace/ Wandering and use of Physical Restraints in British Columbia's Long-term Care Facilities 82 Table 34. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding Things and use of Physical Restraints in British Columbia's Long-term Care Facilities 83 Table 35. Percentage Breakdown of Resident Population with Dementia by Physical Restraints use and Screaming in British Columbia's Long-term Care Facilities 83 Table 36. Percentage Breakdown of Resident Population with Dementia by Physical aggression and use of P.R.N. medication in British Columbia's Long-term Care Facilities 84 Table 37. Percentage Breakdown of Resident Population with Dementia by General Restlessness and use of P.R.N. Medication in British Columbia's Long-term Care Facilities 85 Table 38. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and the use of P.R.N. Medications in British Columbia's Long-term Care Facilities 86 Table 39. Percentage Breakdown of resident Population with Dementia by Pace/Aimless Wandering and use of P.R.N. Medication in British Columbia's Long-term Care Facilities 87 Table 40. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding Things and use of P.R.N. Medication in British Columbia's Long-term Care Facilites 88 Table 41. Percentage Breakdown of Resident Population with Dementia by Facility Type and use of Physical Restraints in British Columbia's Long-term Care Facilities 88 Table 42. Percentage Breakdown of Resident Population with Dementia by Facility Type and use of P.R.N. Medication in British Columbia's Long-term Care Facilities 89 Table 43. Logistic Regression Models of Physical Restraints 96 V ! Table 44. Logistic Regression Models of Chemical Restraints Table 45. Logistic Regression Model of Type of Unit LIST OF FIGURES Figure 1. Causal Model of Restraint Practices 49 •V ACKNOWLEDGEMENTS I extend a special appreciation to Dr. Fiona Kay whose patience, guidance, and encouragement enabled me to successfully complete my thesis. I would also like to thank the rermining members of my thesis committee, Dr. Neal Guppy and Dr. David Tindall for their commitment to my project. There is no adequate way to thank my husband, Richard McConnell-Barker for his kindness, support and love. He was an unending source of emotional support during my computer problems and many late nights. With out his strength I doubt I would have completed my thesis on schedule. CHAPTER 1 - INTRODUCTION Canadians are living longer now than ever before. This longevity revolution is due to a combination of two recent demographic changes: low fertility rates and increasing life expectancy (Foot, 1996: 1). During the past decade the average number of children born per woman has been 1.7. In order, for the Canadian population to replace itself 2.1 babies per woman is necessary (Foot, 1996: 9). Obviously, 2 children are needed to replace the parents of the child. The one tenth of a baby is required in case some children do not make it to adulthood and for women who choose not to have children or who are unable to have children (ibid: 9). The life expectancy for a new born baby in 1900 was approximately 47 years (Bronte, 1993: xvi). A century later the life expectancy for Canadians has increased to the age of 79 years. The 1997 census found that men on average are living to the age of 76 years and women are expected to live to the age of 81 years (Statistics Canada, 1996-1997). One of the fastest growing segments of the Canadian population is the over 65 age cohort. Beaujot found that "the proportion over sixty-five increased from 2.7 per cent in 1851 to 10.6 in 1986, with a projection of 25 per cent by 2036" (1991: 203). These statistics reveal that the elderly population is increasing. For instance, from 1981 to 1986, Canadians aged 65 and above grew at three times the national growth rate (Beaujot, 1991: 203). However, the fastest growing segment of the Canadian population is the eighty years and over population. This age group increased four times as fast as the entire population (ibid: 203). The eighty and above population is a relatively large group consisting mainly of poor older women who were born before World War 1 (Foot, 1996: 179). 1 This tremendous expansion of length of life is a result of medical advances and improvements in life style. The longevity revolution is expected to continue in the years to come as medical advances lead to even greater increases in age. Beaujot predicts that by the year 2036, Canadians on average will live to the age of 84 years (1991: 208). Concurrent with the growth in size of Canada's elderly population are the diseases which generally strike during old age, such as dementia. Dementia tends to be considered a disease that affects only older adults (i.e., people in their 70's or 80's). Although less common some younger adults can suffer from dementia (i.e., people in their 40's and 50's). In the health care profession people who are victims of early on-set memory impairment are usually referred to as "presenile onset." A person is considered to have "presenile onset" if they are 65 years of age or under (Powell and Courtice, 1981: 13). A study conducted by Health and Welfare Canada found that approximately 1.4% of people between 65 to 69 have moderate to severe dementia. They also discovered that this percent increased to 20.8% when subjects only in the age cohort of 85 to 89 were examined. In the final age cohort, which consisted of people 90 and over, they found that 38.6% of the participants suffered from moderate to severe memory impairment (Health and Welfare Canada, 1991: 9). This study demonstrates a strong correlation between age and dementia. In other words, as Canada's population ages the number of people with progressive dementing illnesses will also increase, in particular among people in the age group of 80 years and above. In 1991, 8% of the Canadian population 65 and above suffered from some form of dementia (National Advisory Council on Aging, 1996: 35). It is expected that between 1991 and 2031, the number of Canadians with dementia will triple (ibid: 35). 2 Table 1. Predicted Cases of Dementia in Canada Year Number of Expected Dementia Cases in Canada 1991 253,000 2001 364,000 2011 475,000 2021 592,000 2031 778,000 (National Advisory Council on Aging, 1996: 35) People inflicted with dementia lose their ability to reason, judge, think abstractly, and remember (Coon, 1991: 1). Dementia is a progressive disease. The mental functioning of a person suffering from dementia gradually deteriorates as irreversible damage to brain tissues occurs. Generally, people progress through several stages of mental deterioration before they succumb to the disease. The beginning stages are often associated with forgetfulness and subtle changes in an individual's personality and/or mood. As a person progresses to more advance stages of cognitive decline they may become disoriented to people, places, and time. However, the length of these stages various from person to person. Some people with dementia will live only a few years; others will live for 10 years or more (Coon, 1991: 9). Alzheimer's disease accounts for approximately 50% of all illnesses of dementia (Health and Welfare Canada, 1991: 9). Since, there is such a large portion of people inflicted with Alzheimer's the name has become almost synonymous with dementia. It has been estimated that in Canada between 300,000 to 500,000 people suffer from Alzheimer's disease (ibid: 9). Alzheimer's disease is the forth-leading cause of death among older adults, after heart attacks, cancer, and stroke (Shifflelt and Blieszner, 1988: 147). Yet, despite this fact, very few death certificates cite Alzheimer's disease as the cause of death. Powell and Courtice found that in 3 most cases the Alzheimer's victim died from pneumonia, but as with cancer, it is actually the failure of the organ (i.e., the brain) that eventually causes death (1981: 12). The symptoms, which are associated with Alzheimer's disease, are also found in patients with multi-infarct dementia. An autopsy specialist is able to differentiate multi-infarct Dementia from Alzheimer's disease. The difference is that the brain of the person with multi-infarct shows areas of cerebal softening, believed to be caused by multiple infarctions (Powell and Courtice, 1981: 18). In laymen terms, multiple infarctions are patches of damaged tissue resulting from many small strokes. Health and Welfare Canada's study found that between 12% to 17% of dementing illnesses are caused by vascular damage in the brain, that is, multi-infarct dementia (1991: 9). Combined Alzheimer's disease and multi-infarct dementia account for approximately 70% of all neurological disorders. Some studies have suggested that Alzheimer's disease and multi-infarct dementia represent as high as 90% of all organic brain disorders. The tremendous growth in people suffering from dementia places financial strains on an already stressed health care system. In order to elevate some financial pressure, provincial governments have reformed the health care system from one based primarily on medical care in acute care hospitals toward a system based on community care (Reid, 1996: 1). Care that patients traditionally received in public funded hospitals is now being administered at home. Hospitals are releasing patients earlier with the hope that family and friends can manage the care needs of the patient (Foot, 1996: 52). Home care for the provincial government is a cost saving device as a result of family and friends delivering services. To encourage older adults to remain in their own homes, British Columbia's provincial government provides home support services for seniors. The home support program offers a variety of services to maintain individual's in their own home, including house keeping, meals, 4 adult day programs, and so on. When it is no longer possible for family and friends to maintain an older adult in their own home they may have to be placed in a residential care facility. The consequences of the health reform for long-term care facilities are that these facilities are now housing older, frailer and demented individuals than in the past (Reid, 1996: 1). Fifty percent of all nursing home residents suffer from some dementing illness (Coon, 1991: x). In response to their changing residential mix, long-term care facilities are creating special care units (Reid, 1996: 1). Special care units generally are a self-sufficient unit, that is physically separated from the rest of the facility. In British Columbia special care units operate under The Community Care Facility Act. The Act specifies that special care units are to be self-contained and to have a controlled entrance/exit from the unit. The focus of the unit is on providing care for the demented resident. Thus, the unit's client population consists mainly of people with an active diagnosis of dementia. Some special care units do house residents with other diseases (such as brain injured non-elderly, or elderly with severe behavioral problems) (Gutman, 1992: 21). Special care units tend to have staff with specialized training in dementia care. These units may also provide special activities and/or therapeutic programs to assist in stimulating the clientele mentally and physically. The number of special care units in British Columbia has increased rapidly. In 1976, there was only one special care unit; as of 1990 that number has grown to 37 (Reid, 1996: 1). Accompanying the sudden emergence of special care units are disagreements among health care professionals regarding whether the cognitively impaired should reside in integrated or segregated facilities. Lawton argued that cognitively impaired people need to have available role models, who can demonstrate what is appropriate behaviour (1981: ). She also pointed to the 5 fact that cognitively intact residents would help provide stimulation, through social interaction and other activities, for their cognitively impaired neighours (ibid: 19). Those who favour segregation believe that the needs of confused residents differ from those of alert residents, and that a single unit would not accommodate both types of residents. A physical environment which met the needs of alert residents would be to demanding and lack the protection required for residents with dementia (Coon, 1991: 8). In addition, it would be unfair for the people with dementia to be expected to function in a unit, with people who are capable of mamtaining a faster pace of life. Alert residents may also find it stressful to be constantly reminded of what their future may hold (Health and Welfare Canada, 1991: 15). The debate remains unresolved, however, providing quality care for memory impaired residents is a concern for health care professionals as well as for their family members. Special care units, in general have been accepted by most lay people and some health care providers as a means of obtaining a better quality of care for the demented. Special care units are becoming more prevalent in British Columbia. Yet, there have been few studies which evaluate special care units, and even fewer that compare special care units with integrated care units. It is within this context that I conducted my study on the quality of care that dementia residents receive in long-term care facilities. This thesis will evaluate the quality of care that dementia residents receive while housed in open and closed units. More specifically, the objective of this comparative study is to analyses whether restraint practices for residents with dementia differ between special care units (open units) and integrated units (closed units) within long-term care facilities across British Columbia. Also, this study will describe which inappropriate behaviours are predictors for placement in a 6 special care unit. One of the purposes of this study is to demonstrate how an institutionalized demented person's quality of life is affected (reduced in all likelihood) when they encounter physical and chemical restraints. In order to accomplish these objectives a comparative program evaluation will be performed. Program evaluations in general, are concerned with assessing the effectiveness of something, such as a service, policy, program, and so on (Robson, 1993: 170). This study will examine the effectiveness of special care units in providing care for their memory impaired clientele. Since, special care units are created specifically for residents with cognitive decline I believe that staff will be less likely to administer physical and chemical restraints than staff in long-term care units not specifically designed to house the memory impaired. Based on this assumption and my thirteen years of working in long-term care settings, I believe that employees of special care units will be more tolerant of inappropriate behaviours, and thus less likely to use physical and chemical restraints to manage difficult behaviours. Therefore, one proposition of this study is that there will be higher levels of memory impairment and more disruptive behaviours displayed among residents in special care units when compared with dementia residents of an integrated wards. Even though special care units contain more residents who engage in difficult behaviours, I believe that staff will be less likely to administer physical and chemical restraints than staff employed in integrated care units. This propositions is based on the assumption that since special care unit were created specifically for the demented, they will have alternative care approaches for managing difficult behaviours. Chapter 1 of this thesis outlines the longevity revolution that is occurring in Canada. This chapter sites some of the consequences of this demographic shift, such as the increasing portion 7 of residents suffering from dementing illnesses. Chapter 1 also explains how some long-term care facilities are responding to this demographic shift by creating special care units. The gerontological literature is rampant with ambiguities about which physical environment provides the best care for persons with dementia. This active debate among health care providers is discussed in Chapter 2. Chapter 2 presents the types of inappropriate behaviours that are commonly displayed by persons with memory impairment. Frequency and type of physical and chemical restraints nursing homes employ when caring for the demented will also addressed in Chapter 2. Chapter 3 applies the research method of program evaluation to my study on restraint practices. This chapter explores arguments in support and against the two main hypotheses. The arguments are developed to assist in the evaluation of special care units and integrated units. Chapter 4 focuses on research design, detailing the questionnaires that The Intermediate Care Facility Project used. This chapter includes a description of data collection, sampling, and methodologies. Chapter 4 also discusses the instruments that I selected for my study. This chapter concludes with an overview to the statistical tests to be conducted using the available data. Univariate and bivariate data analysis are presented in Chapter 5. Frequency tables are utilized to display certain demographic information about the residents who participated in the study. Cross-tabulation tables are presented and discussed in this chapter. The final section in this chapter presents logistic regression analysis used to predict the probability that a behaviour will occur. In the final chapter, Chapter 6, summary discussion and conclusions are presented. This chapter provides further interpretation of the main findings of this research study. My study's main findings are then contextualized in the broader gerontological literature. Based on my findings, recommendations are provided for future gerontological research, health services, policies, and evaluation design studies. 8 C H A P T E R 2 - R E V I E W O F L I T E R A T U R E The purpose of this chapter is to provide a brief overview of the gerontological studies that research various problems commonly associated with dementia, including, the debate over special care units and integrated units, behavioural problems, and restraint practices. In the first section, studies that deal with the ongoing debate among health care professionals regarding which type of unit is the most appropriate for people with cognitive decline is explored. Some professionals argue that since special care units were created specifically for the memory impaired that they will offer a better quality of care than regular units. The second section examines the types of behaviours that are displayed by persons with memory impairment. In particular, this section pays close attention to the relationship between level of memory impairment and the frequency of disruptive behaviours. The third section of this chapter documents the types of physical and chemical restraints that nursing homes employ when caring for persons with dementia. The chapter ends with a discussion of the limitations found in existing studies. Also, addressed in this section is how my study will fill a gap clearly defined within the broader gerontological body of literature. There exists an active debate among health care professionals regarding whether persons with dementia should be placed in special care units or integrated units. Some professionals favour integrated units based on the ideology that cognitively intact residents would have a stabilizing effect on the demented. For instance, Lawton argued that demented residents benefit from having daily contact with cognitively intact residents who can assist in stimulating their cognitively impaired neighbour (1980:266). Lawton states that the intact resident can demonstrate to the demented resident what is appropriate behaviour. In contrast, Coon (1987) 9 believes that mentally intact resident can not serve as role models for people with moderate-severe dementia. It is unrealistic, Coon argue, to assume that a person with sever dementia would be able to understand what is or is not appropriate behaviour. Professionals who support segregated units base this belief on the theory that a closed unit would reduce stimulation that can destabilize patients with Alzheimer's disease. 2.1 Integrated and Segregated Care Units These three studies examine the on going debate over which environment is the most appropriate for a person with memory impairment i.e., special care units or integrated units. Some of the authors feel that due to the care plan and the unit design special care units offer residents suffering from dementia a better quality of care than integrated units. Whereas, other researchers believe that confused residents would benefit from the daily contact of alert nursing home residents. They argue that dementia resident's inappropriate behaviours would improve as a result of modeling after their alert neighbours. A Longitudinal study conducted by registered nurses Hall, Kirschling and Todd "Sheltered Freedom: An Alzheimer's Unit in an Intermediate Care Facility" (1986) evaluated the effects of a low stimulus unit (Special Cafe Unit) on the behaviours of residents with memory impairment. Their study was performed at The Iowa City Center, an 89 bed intermediate care facility. Approximately 20 percent of the facilities residents had an active diagnosis of Alzheimer's disease. The nursing staff encouraged the facility to develop a separate unit, which would accommodate the special needs of residents with dementia. 10 As a result a low-stimulus unit was created. The unit consisted of twelve semi-private rooms. For their study Hall, Kirschling and Todd selected twelve residents with Alzheimer's disease ranging from 69-91 years of age. These residents were transferred from the integrated unit to the low stimulus unit. The remaining twelve beds were allocated for residents with activity limited to bed or chair (i.e., similar to an extended care unit). Some of the low stimulus adaptations the authors made to the unit were that dining tables were placed in every other room, residents were encouraged to eat in groups of three or four, also they removed mirrors, televisions, public address systems and pictures. Their rationale was that these objects could prove to be a source of illusion and delusion; for instance, a demented person may interpret a television figure as a living person. In addition, Hall and colleagues (1986) developed a care plan designed specifically for people with dementia. Care planning and problem-solving were perceived as a continuous process that involved all staff and family members. They implemented a non-drugs measure as first choice for agitated residents. If this was unsuccessful in controlling inappropriate patterns of behaviour, the medication regimen was then further adapted to patients' individual needs. Following the low stimulus unit's first three months of operation the authors observed several changes which occurred in the twelve residents with Alzheimer's: 1. Prior to unit admission, all residents had been losing weight. At the end of the first three months operation six residents gained, five remained stable and one continued to lose. The standard 1,800 calorie per day diet was not increased. 2. Residents' agitation and wandering episodes have decreased and overall they tend to have fewer delusions and illusions. 11 3. When initially transferred all of the residents were receiving large doses of anti-psychotic and neuroleptic medication. These medications have been removed or reduced for five of the residents. 4. PRN have been removed from all but one resident. Overall Hall, Kirschling and Todd (1986) found that the unit design and the care plans implemented met the special needs of residents with memory impairment. They improved the quality of care of the demented residents through the decreased use of medications and by mamtaining or improving the resident's weight. A study which had similar findings to Hall et al. (1986) was that of McCracken and Fitzwater, "The Right Environment for Alzheimers" (1989). On admission to the Maple Knoll nursing home in Cincinnati, Ohio, residents were interviewed by the facilities social worker. The information that was gathered during the preliminary interview became part of McCracken and Fitzwater Dementia Behaviour Scale assessment. On a monthly bases the scale was administered by a clinical nurse. After the Dementia Behavior Scale had been in use for a year, McCracken and Fitzwater compared the data obtained from the initial interview with the monthly follow-up scores of eleven residents admitted to the Special Care Unit. Their findings indicated that on admission, the eleven residents had problems in the categories of dressmg/groorning, language/conversation, social interaction, and attention/awareness. A year later, eight of the eleven residents had improved function in all of the categories. McCracken and Fitzwater (1989) argued that these improvements were due to the greater supervision and interaction with staff on the smaller, less stressful segregated unit. However, they also believed that not all residents with dementia function best on a closed unit. 12 Residents who have mild Alzheimer's disease who are more capable with their Activities of Daily Living (i.e., A.D.L.) should be allowed on an open unit until their disease progresses. A limitation with the study was that McCracken and Fitzwater never applied their Dementia Behavior Scale on Alzheimer's residents admitted to the open unit. Therefore, the improvements the new admission residents demonstrated might have been a result of experiencing institutional care regardless of unit. Since McCracken and Fitwater never performed a comparative analysis, it is difficult to attribute the benefits gained by the Alzheimer's residents to the special care unit. Carroll and Gray (1983) performed a study that examined the effects of demented residents in an integrated unit, titled, "How to Integrate the Cognitively Impaired in Group Activities." A therapeutic meal group was the activity Carroll and Gray used to observe how lucid and confused residents interact. Subjects for the study were selected based on their results from the Mental Status Questionnaire (which measures the level of memory impairment a subject displays). The breakfast group consisted of six female nursing home residents; three with severe memory impairment and three defined as alert residents. The activity the group participated in was eating their morning breakfast in the facilities dining room. Two mornings each week the breakfast group was observed. The methodology Carroll and Gray (1983) utilized was behaviour mapping. This method enabled them to systematically observe and define social, psychological, and physical behaviour over an eight-week period of time. Every two minutes an observation was recorded for all of the subjects throughout the breakfast encounter. Behaviours were categorized by Carroll and Gray as either appropriate or inappropriate. They also implemented a second measure, which was conducted one hour after the group breakfast. The purpose of this measurement was to get immediate feedback from all participants regarding their breakfast experience. The primary function for the unstructured 13 interview was to determine how alert participants reacted to being integrated with impaired participants. Carroll and Gray (1983) discovered that both the severely impaired residents and the alert residents viewed the breakfast group as a pleasant experience. The behaviour mapping data also indicated that the impaired residents' appropriate behaviour improved significantly over the course of the study. In addition, they stated that the improvements in behaviour were remarkable considering the severe level of memory impairment that the three women had. By the end of the study these three women were engaging in near perfect behaviour. In other words, Carroll and Gray found that the confused residents benefited from having frequent contact with the alert resident who served as role models for how to eat breakfast appropriately. A review of these three key studies indicates that there exists conflicting results iri the research data regarding the benefits or disadvantages of special care units. Yet, while this debate has taken place, there has also been a tremendous growth of special care units in long term care facilities. For instance, in 1978 British Columbia had only one special care unit; by 1990 the number had grown to 37 special care units (Reid, 1996: 1). Despite the prevalence of special care units, there has been little empirical data concerning the impact of these units on a resident's quality of life. The percentage of elderly people with dementia is expected to increase in the next two decades due to the growing proportion of older people within the Canadian population. Demographers have predicted that when the baby boom generation reaches old age, approximately 25 percent of the Canadian population will be 65 and older. Therefore, it is timely to evaluate the quality of care that residents with dementia have in British Columbia's long term care facilities. 14 In order to evaluate institutional care of memory impaired residents effectively a comparative study (of closed units with open units) with an adequate sample size needs to be conducted. Thus, the objectives of this study are to compare the quality of care (in terms of problem behavior and the use of pharmacological and physical restraints) that demented residents receive while residing in special care and integrated units 2.2 Behavioral Problems Cognitively impaired persons residing in intermediate care facilities often exhibit inappropriate behaviours. The most common behaviours displayed by persons with memory impairment are agitation, aggression (physical and verbal) continuous wandering and incontinence. Fisher, Fink and Loomis (1993) contended that "behavioral problems are very common among dementia patients who are moderately to severely cognitively impaired. Given the large proportion of severely impaired dementia patients within nursing homes, the prevalence of behavioural problems that care givers in long term care facilities encounter is exceptionally high" (Fisher et al., 1993:3). A study conducted by Teri, Larson and Reifler (1988), titled, "Behavioral Disturbance in Dementia of the Alzheimer's Type," examined the nature of behavioural disturbances among Alzheimer patients. The researchers paid particular attention to the relationship between severity of impairment and the type of behavioural disturbances. The subjects were patients from the outpatient Geriatric and Family Services Clinic at the University of Washington Hospital in Washington State. Following a comprehensive geriatric evaluation conducted by an experienced geriatric psychiatrist, or psychologist 127 subjects were selected for the study. All of the 15 subjects were given a number of tests as part of their diagnostic evaluation. These tests included: The Folstein Mini-Mental State Exam, The Blessed Dementia Rating Scale and eight additional tests that evaluated behaviours. From these tests Teri et al, (1988) found that the frequency of most problems (i.e., incontinence, hygiene, agitation, wandering, hallucinations, falling, suspiciousness, and restlessness) increased with cognitive impairment. Incontinence, hygiene, agitation and wandering were four problems that increased significantly. Patients with mild and moderate cognitive impairment averaged two behavioural problems; whereas, patients with severe memory impairment averaged around four behavioral problems. The researchers found that restlessness was the only problem that did not increase but was prevalent for all levels of impairment. A study by Swearer, Drachman, O'Donnell and Mitchell (1988) study on "Troublesome and Disruptive Behaviors in Dementia" also examined disruptive behaviours that tend to accompany Alzheimer's disease. However, unlike the study by Terri et al. (1988) which focused on only Alzheimer's disease, Swearer et al. (1988) included two other common forms of memory impairment: multi-infarct dementia, and mixed dementia (which is a combination of Alzheimer's disease and multi-infarct dementia). The 126 subjects were patients at the University of Massachusetts Medical Center Alzheimer's Disease and Related Disorders Research Clinic. The age range of these demented patients was 38 to 87 years. Slightly over half of the subjects were female (55%). Based upon history, neurological examinations, and laboratory tests, the researchers were able to determine that 57 of the patients had probable Alzheimer's, 17 had MIX dementia (as mentioned, mixed dementia is a combination of Alzheimer's disease and multi-infarct dementia), and 24 had Multi-16 Infarct dementia. The remaining 28 were diagnosed as having other dementia diseases (e.g., Pick's disease, Parkinson's disease, Down's Syndrome, etc.). Trained researchers contacted the primary caregivers of the patients by telephone to conduct detailed interviews. A standard questionnaire was used to obtain information regarding the patient's behaviour. Included in the interview were questions about severity of nine targeted troublesome behaviours: angry outburst, assaultive/violent behaviour, hallucinations/delusions, paranoid thoughts, phobias, dietary changes, sleep disturbances, and incontinence, anxiety, and depressive symptoms. Swearer et ai. (1988) found that 83 % of the 126 demented patients exhibited one or more of the disruptive behaviours, 74% had two, and 55% had three or more disruptive behaviours. The most common disruptive behaviour was an angry outburst (51%). Forty-six percent of the patients suffered from dietary change, 45% sleep disturbances, 32% paranoia, 25% phobias, 21% assaultive/violent behaviour, 21% bizarre behaviour, and 17% incontinence. An important finding was that the prevalence and severity of the behaviours did not differ in either frequency or type when patients with Alzheimer's disease, multi-infarct and MIX dementia (which is a combination of Alzheimer's disease and multi-infarct dementia) were compared. Another important finding which contradicts most studies on behaviours and dementia was that degree of mental impairment was correlated only weakly with a single behaviour - assaultiveness. This suggests that disruptive behaviours were not a direct product of mental deterioration. For example, they found that age had a stronger correlation with certain disruptive behaviours (e.g., hallucinations, ideational disorders, and delusions). A study by Riter and Fries (1992) titled, "Predicators of the Placement of Cognitively Impaired Residents on Special Care Units," examined nursing homes that had both a Special 17 Care Unit and nonspecialized unit to determine what disruptive behaviours caused homes to place demented residents on Special Care Units. The sample for this study was obtained from the 1990 Health Care Financing Administration Multistate Nursing Home Case-Mixed and Quality Demonstration Project. A survey instrument was used to collect data on 6,888 residents in 176 nursing homes in the states of Kansas, Maine, Mississippi, Nebraska, South Dakota, and Texas. Riter and Fries (1992) found that in bivariate relationships cognitively impaired residents on special care units were significantly more likely to wander than similarly cognitively impaired residents on non-special care units, were more likely to be physically abusive and were more likely to be verbally abusive. However, when they controlled for other independent variables, such as wandering, verbal abuse, and physical abuse were no longer significant predictors of special care unit placement. The most fascinating finding in this study was that problematic behaviours did not increase the likelihood of a cognitively impaired resident being located in a closed unit. Based on their multivariate analysis, Riter and Fries (1992)) discovered that "Activities of Daily Living" (A.D.L.) were a stronger predicator than disruptive behaviours for placement in a Special Care Unit. In other words, cognitively impaired residents in Special Care Units are more independent with walking, dressing, toileting, eating, and so on than non-special care residents. More recently, Neena Chappell (1996) from The Center on Aging at the University of Victoria, conducted a study on the characteristics of memory impaired residents in intermediate care facilities. A survey was mailed to either the director of care or the director of nursing care that requested them to complete the questionnaire. A total of 194 facilities, which contained 185 integrated units and 67 special care units, responded to the survey (60 of the 194 facilities 18 contained both a special care unit and integrated care unit, thus, making the total number of units involved in the study 252). Chappell (1996) found that special care unit residents tended to suffer from more severe dementia than do residents with dementia in the integrated wards. The survey demonstrated that "over half of all special care unit residents (56%) had at least severe cognitive decline and almost all (85%) had at least moderately severe cognitive decline. In contrast, only 20% of residents with dementia in integrated wards were in the severe to very severe range." Table 2. Percentage Breakdown of Resident Population with Dementia by Severity of Dementia and Type of Ward SEVERITY OF DEMENTIA TYPE OF UNIT SPECIAL CARE UNIT INTEGRATED UNIT MILD 4% 29% MODERATE 11% 29% MODERATELY SEVERE 29% 21% SEVERE 32% 13% VERY SEVERE 24% 7% 100% 100% N=185 N=67 (The Centre on Aging, 1996: 3) 2.3 Physical and Chemical Restraints Behavioural problems not only diminish the quality of life for demented patients, but they also present a tremendous challenge for caregivers. Nursing home staff have limited resources. As a result, they have few options to choose from when trying to manage difficult behaviours. Hence, a common practice for managing behavioural problems is the use of physical and chemical restraints. 19 Physical restraints are defined as any mechanical device that is applied to an individual to restrict their movement (Tinetti, Liu, Marottoli and Ginter 1991: 468). Such devices limit movement or normal functions of a person's body. Zimmer, Watson and Treat (1984) found that restraints were used in nearly 50% of dementia residents in intermediate care facilities that displayed moderate or serious behavioural problems. In a survey of nursing home residents, one third of the residents reported to be restrained were agitated; 36% were aggressive; 43% were wanderers and 27% were withdrawn (Canadian Nursing Home Survey, 1977). Tinetti, Liu, Marottoli and Ginter (1991) reported that 66% of residents were restrained at some point during a year period with unsteadiness or concern about falling (72%), disruptive behaviour such as agitation (41%), and prevention of wandering (20%) being the most frequently cited reasons for the initial use of restraints. In addition, they discovered that waist restraints (soft and hard lap belts) were the most common restraint applied and that they were usually administered while the resident was in a wheelchair. Fifty one percent of the 397 subjects experienced the use of bilateral bed rails during the night. The study conducted by Neena Chappell (1996) found that the practice of physical restraint use was wide spread in nursing homes across British Columbia. "The most commonly used physical restraints were geri-chairs, lap belts and bed rails, with approximately half of all facilities reporting the use of these restraints for behavior management purposes. Dutch doors, isolation, seclusion, the posey vest, wheel chair trays, and "other" restraints were less frequently used. Ankle cuffs, sheet and wrist restraints were rarely or never used." 20 Table 3. Physical Restraint use in British Columbia Long Term Care Facilities RESTRAINT TYPE PERCENT USING RESTRAINT TYPE PERCENT USING Geri-Chair 53% Seclusion 10% Lap belt 50% Isolation 8% Bed rails 46% Sheet restraint 2% Wheelchair tray 28% Wrist restraint 1% Dutch doors 13% Ankle cuff 0% Posey vest 11% Other 13% N=252 (The Centre on Aging, 1996: 6) Physically restrained patients are not limited to Intermediate care faculties. Unfortunately, the practice of mechanical restraint use is a familiar sight on the medical wards in many hospitals. In fact, the literature review revealed that most of the studies dealing with physical restraints focused on hospital settings. These articles are relevant to my study because they explore the demographic characteristic of hospitalized patients who experience restraint use. Lofgren, MacPherson, Granieri, Myllenbeck and Sprafka (1989) discovered that of the 1,661 patients admitted to the general ward, 102 (6 percent) were physically restrained during their hospital stay. Restrained patients were usually elderly with an average age of 75.4 years and often confused with multiple chronic diseases. An interesting finding was that all but one of the restrained subjects were male. A large portion of the restrained patients were admitted from home (42%), nursing homes (27%), transfers from other hospitals (15%), intensive care units (13%), or else where (3%). Sixty percent of the restrained patients admitted from home were discharged to an intermediate care facility. Lofgren et al. (1989) chose not to identify the state or hospital, in which their study was conducted. However, one can assume that the study was done in a veteran's hospital due to the extremely high percentage of males. 21 In majority of the hospital studies, cognitive impairment tended to be the strongest predictor of physical restraint use. Robbins, Boyko, Lane, Cooper and Jahnigen (1987) found, in their study on hospitalized patients at the Denver Veterans Administration Hospital, that memory impairment which was assessed during admission was the only independent predictor of restraint use. The other variables (i.e., advanced age, poor ambulation, poor prognosis, etc.) were linked to restraints use only through the association of limited cognitive functioning. Memory impairment was also implicated in a study by Mion, Frengley, Jakovcic and Marino (1989) as a reason for the use of physical restraints. They found that those patients who demonstrated memory impairment, poor judgement, and/or behavioural disorders were most likely to be physically restrained. Their study suggests that demographic characteristics of the patients, such as age, gender, and race, were not deciding factors in the use of restraints. An important finding from this study was that chemical restraints were used in conjunction with physical restraints and not as alternatives to physical restraints. Several studies (Mion, Frengley, Jakovcic and Marino, 1989; and Evans and Strump 1989) have indicated that facilities that tend to use a greater variety of physical restraints also tend to use a greater variety of chemical restraints. Thus, there appears to be a correlation between the use of physical restraints and chemical restraints within hospitals and long term care facilities. Moyra Jones defined chemical restraints as "any medication given to control mood, mental status or behavior which has no therapeutic benefit. Such restraints include mood altering medication, psychoactive drugs, tranquilizers and sedatives" (1995: 118). As an occupational therapist who specializes in nursing home care, Moyra Jones found that drug therapy was the most common treatment prescribed for mental disorders for the elderly (1995:108). Ray, Federspiel and Schaffher (1980) discovered that 43% of nursing home residents received anti-22 psychotic medication daily and 9% of this population were chronic recipients. A study by Buck (1988) found that 60% of their nursing home subjects received at least one psychotropic medication during the research period. He also noted that the mean length of administration of most of the medications was six months or longer. Thus, implying that once a resident was placed on these medications, the practice continued even if the behaviour or illness was no longer present. Other studies, such as one by Beardly, Larson, Burns, Thompson and Kamerow (1989), have revealed abuses in the prescription of medication. Beardly et al. (1989) discovered that more than 20% of nursing home patients who received prescribed psychotropic medications did not have a documented mental disorder and/or did they display symptoms associated with memory impairment. In other words, psychotropic medications prescribed to other nursing home patients were being given to residents without a medical order. The findings from these studies suggest an excessive use of chemical restraints among nursing home residents. In an attempt to understand which facilities were more likely to exercise chemical restraints, Ray, Federspiel and Schaffiier (1980) examined various characteristics of nursing homes. Their findings revealed a positive correlation between facility size and the amount of anti-psychotic medications administered. Larger nursing homes were shown to use more anti-psychotic medication. Ray, Federspiel and Schaffiier (1980) rationalized that the greater use of chemical restraints within larger nursing homes may have been a result of facilities attempting to reduce overheads. This reasoning was based on their finding that larger facilities employed significantly fewer personal care aids per resident. Moyra Jones argued that "..although restrictions on health care budgets apply throughout the health care system, the 23 practice of using restraints due to shortage of staff is not applied to children or middle- aged persons ....only to the elderly" (1995: 126). Some other common justifications by hospital staff for the implementation of chemical and physical restraints are: for the prevention of falls or because of the resident's mental status or because the resident tires easily (Williams, 1989: 6). Tinetti, Liu, Marottoli and Ginter (1991) found that the most frequently sited reasons for the initiation of restraint use were unsteadiness, disruptive behaviour and wandering. A study conducted by Fisher, Fink and Loomis (1993) examined nursing home staff stress levels in managing residents with memory impairment. The findings demonstrated that stress levels increased when the nurses encountered disruptive behaviors such as aggression (assaultiveness) and agitation. Fisher et al. (1993) explained that the nursing home staff possibly received inadequate training on how to manage these behavioural problems. Unfortunately, one of the standard methods for controlling inappropriate behaviours is the widespread use of physical and chemical restraints. One of the greatest challenges facing intermediate care facilities is the ability to providing efficient and quality care for the demented. Health care providers are aware of the harmful effects that the excessive uses of chemical and physical restraints have upon a resident's quality of life (Evans and Strumpf, 1989: 70). Gerdes (1968) warned that restraints seem to further confuse a resident with dementia, and that restraints lead to sensory deprivation and a loss of self-image. Werner, Cohen-Mansfield, Braun and Marx (1989) discovered that restraint use does not decrease inappropriate behaviours (agitation) in dementia patients residing in nursing homes. In addition, they found that chemically restrained residents seem to have a considerable number of falls. This finding corroborated other studies that reported that the risk of falls increases when 24 restraints were applied. The use of chemical restraints can distort a residents vision which than can impair their balance. Falls can also be caused by a resident trying to undo a physical restraint or climbing over bed rails (Jones, 1995: 124). The consequences of restraint use are not restricted to falls they include urinary retention, constipation, muscle atrophy, loss of dignity, cardiac stress, skin abrasions, and accidental deaths. A review of the literature reveals that the negative side effects of restraint use has been well documented (Jones, 1996: 117-127). However, information on comparisons between restraint use in Special Care Units with integrated units is limited (Gutman, 1992: 65). 2.4 Limitations/Conclusion The studies examined in this chapter produced some interesting findings. Hall, Kirschling and Todd (1988) found that once dementia residents were removed from a regular unit and placed in a special care unit their level of agitation and wandering decreased. In contrast, a study conducted by Carroll and Gray (1983) showed that dementia residents' behaviour improved due to frequent contact with alert residents. Another interesting finding was that as a person's memory impairment advances the more likely they were to engage in problematic behaviours (Teri, Larson and Reifler, 1988). Fisher, Fink and Loomis (1993) found that the most common behaviours displayed by persons with memory impairment were agitation, aggression, wandering, and incontinence. Tinetti, Liu, Marottoli and Ginter (1991) found that a common practice for managing difficult behaviours was the use of physical and chemical restraints. Their study showed that 66% of nursing home residents experienced restraints with unsteadiness, disruptive behaviour, and wandering the most frequently sited reason for restraint 25 use. Although, these studies generated some interesting findings there were some limitations in how these studies were performed. This review of gerontological literature revealed that research addressing the effectiveness of special care units and integrated units is generally limited to evaluating the impact of a single unit. The studies on "type of unit" demonstrated a common limitation that their sample size was too small to be an adequate representation of memory impaired nursing home residents (for example, Carroll and Gray's study in 1983 had only six subjects). In the restraint and behavioural studies, the majority of their samples were based on the entire population of nursing homes or hospital residents rather than targeting dementia patients specifically. Another limitation of these studies was that the nursing homes and hospitals were not randomly selected. Thus, their results were less generalizable to other nursing homes/hospitals. The final limitation was that none of these studies conducted a comparative study of special care units and integrated units. The gap that my study will fill in the existing body of gerontological literature is that it will provide a comparative evaluation of special care units and integrated units. More specifically, my study will examine whether restraint practices for residents with dementia differ between special care units and integrated units. Also, this study will describe which inappropriate behaviours are predictors for placement in a special care unit. The purpose of this study is to examine how an institutionalized demented person's quality of life is affected (reduced in all likelihood) when they encounter physical and chemical restraints. Finally, this study will provide recommendations for how the Canadian Government could improve the standard of care of dementia residents housed in long-term care facilities. 26 The next chapter focuses on program evaluation and how my study fits within a model of program evaluation. Key research objectives and critieria for the evaluation of special care units and integrated wards are outlined in Chapter 3. 27 C H A P T E R 3 - P R O G R A M E V A L U A T I O N The purpose of this chapter is to apply the research method of program evaluation to my study of restraint practices. In the first section I present a definition of program evaluation. This definition is then used in relation to my study on restraint practices within open and closed units in long-term care facilities. Included in this section is a brief overview of the matching process that The Intermediate Care Facility Project used in order to create a comparison group to their experimental group. For example, the researcher involved The Intermediate Care Facility Project would try to find someone from an integrated unit who was similar demographically to a resident who resides in a special care unit. This chapter also explores arguments in favour and against the studies' two hypotheses. The purpose of presenting competing arguments is to assist in the evaluation of the quality of care that dementia residents receive while residing in different units. 3.1 Definition of a Prosram Evaluation There are numerous interpretations of what represents program evaluation. One of the most simple definitions is provided by Earl Babbie. He states that, "evaluation research- sometimes called program evaluation - refers to a research method. Its special purpose is to evaluate the impact of social interventions, such w teaching methods [and] innovations in parole. ...In its simplest sense, evaluation research is a process of deterrnining whether the intended result was produced" (Babbie, 1992: 346-347). 28 A social intervention that will be evaluated in this paper is the impact that special care units have on a residents' quality of care. More specifically, the objective of this comparative study is to analyse whether restraint practices for residents with dementia differ between special care units and integrated units within long-term care facilities across British Columbia. Therefore, the aim of my study is to demonstrate that special care units contain more residents who engage in disruptive behaviours than integrated care units or in Babbie's terms, this is the "intended result". I also intend to demonstrate that even though special care units house more residents who display inappropriate behaviours, these residents will be less likely to resort to physical and chemical restraints than residents of integrated wards. Experimental design is one of the more common designs implemented by program evaluators. Generally, this type of design involves randomly selecting subjects to either an experimental or a control group (Babbie, 1992: 351-352). My study compares two groups of subjects, however, due to the use of secondary data and the data collection process itself (which are discussed further in Chapter 4), my subjects were not randomly assigned to special care units or integrated units. Since, The Intermediate Care Facility Project was unable to construct a control group they developed a matching process. The matching process entailed trying to find a match for each person who was eligible from a special care unit with a new admission from an integrated unit. For example, a matching process involves trying to find a "comparison person" from an integrated ward who has similar demographic variables and level of memory impairment as a 75 year old woman with moderate dementia who resides in a special care unit (Weiss, 1998: 203). Although, the matching design The Intermediate Care Facility Project used may not be as accurate as a design in which subjects are randomly assigned, it is still better than assessing the experimental group (special care units) without any comparison group (Babbie, 1992: 355). 29 The following section will explore possible explanations for why dementia residents residing in special care units would display more frequently inappropriate behaviours than residents in an integrated care unit. 3.2 Arguments in Favour or Against the Studies Hypotheses Reasons Why Special Care Units Have More Inappropriate Behaviours: The first proposition for this study is that there will be more disruptive behaviour among residents in Special Care Units when compared with demented residents of integrated units. Residents in special care units tend to suffer from more severe dementia than do residents with dementia in the integrated wards. A survey performed by The Centre on Aging at The University of Victoria (1995-1996) discovered that over half of all special care unit residents have at least severe cognitive decline and almost all have at least moderately severe cognitive decline. As people who suffer from Alzheimer's progress to more advance stages of the disease, the intensity and frequency of disruptive behaviours also tend to become more pronounced (Teri, Larson, Burton and Reifler, 1988: 2-3). Common behaviours that a person with memory impairment exhibits are physical aggression, verbal aggression, wandering, hiding objects, and incontinence. Once a person progresses to severe cognitive decline behaviours identified as management problems often serve as the only means by which the person can express themselves. For instance, a resident who is constantly screaming may just be lonely and want attention from the facilities staff. Based on the findings from The Intermediate Care Facility 30 Survey one can assume that special care units tend to house residents with more severe impairments which can also be associated with behavioural problems. Reasons For Why Special Care Units Do Not Have More Behavioural Problems: In order to qualify for placement in a long-term care facility, a health care team (which typically includes a long-term care nurse and a social worker) must assess the Activities of Daily Living (ADL's) of the older adult. Based on the teams' assessment the client, his/her family members are giving a list of facilities, which will meet the older adults needs. From this list, the client is permitted to select two facilities in which he/she would like to reside. Generally, after viewing the facilities and meeting with the director of care the family then rank their top two facilities. When a bed becomes available in one of the facilities, regardless of the ranking order, the older adult is then admitted. Unfortunately, beds in Special Care Units are quite scarce. Therefore, the vast majority of residents with dementia start out in an integrated ward. In some cases residents wait months, even years, until a bed becomes available in their top ranked facility. Only in a crisis situation where a resident is defined as high risk due to extreme physical abuse of staff or aggressive self-abuse are they automatically transferred to a respite bed in a Special Care Unit or to a mental health ward in a hospital. Due to the long wait list for special care units, a large portion of integrated care facilities contain residents with an active diagnosis of memory impairment. Hence, Integrated Care Facilities could possible have as many residents with behavioural problems as Special Care Units. A study conducted by Felt and Davis titled "Care Practices for Persons with Dementia in 31 Ontario's Homes for the Aged," (1995) found that there was ho difference in the prevalence of behavioural problems between special care unit residents and integrated care facility residents with dementia. Felt and Davis also discovered that 41% of all residents in an integrated care facility were rated as having moderate or severe dementia. These results demonstrate that an integrated care facilities' population may reflect the same behavioural problems of special care units. Reasons For Why Special Care Units would not Use Restraints The second proposition is that there will be a decreased use of physical and chemical restraints among residents in special care units when compared with residents of integrated wards. In a special care unit the role of the architectural environment can be an important factor in the care of residents with dementia. The physical environment does not have to be restricted to shelter for its occupants, but rather should be utilised as a source of therapeutic intervention (Coons, 1991: 83). Generally, units which have been designed to house residents with Alzheimer's take into consideration the disruptive behaviours commonly associated with the disease. Wandering, physical and verbal aggression, and agitation are some of the more frequently cited inappropriate behaviours in which people with cognitive decline engage in (Chappell, 1996; and Teri, Larson and Reifler, 1988). Special care units are designed with the knowledge and understanding that wandering for some dementia residents is an expression of feeling restless, disoriented or has become a habitual activity. Rather than discouraging residents 32 from wandering, some special care units have been designed with continuous indoor wandering space. However, the alternative for a facility that lacks adequate wandering space is an attempt to restrict the movement of the agitated resident through the use of physical restraints. Another means of restricting the use of physical and chemical restraints in special care units is by using environmental cues. Environmental cues are used to support memory functions of residents with dementia. Large faced calendars, clocks, labels, pictures or signs, and bulletin boards are examples of cues used to support memory functions. The use of a visual cue identifying where the washroom is located could assist a resident who had been previously labelled as incontinent, and therefore, was receiving a chemical restraint to control their bladder. People who suffer from more advance stages of cognitive decline are usually unable to reason or make appropriate judgements. These impairments affect a persons ability to understand why they are living in a nursing home. As a result, some residents may attempt to leave the facility in efforts to locate their home or family. In the health care profession people who frequently attempt to leave the facility are referred to as "elopers," "exit seekers" or wanderers (Jones, 1996: 429) To reduce elopement risks special care units generally use security systems which are in stalled in exit/entry door. (For example, coded entry, a buzzer system). Also, some units use surveillance security to monitor residents (for example the use of cameras). Although, these devices are used to protect residents from eloping, thus, reducing or eliminating restraint use, these devices are also, to some degree, invading the privacy of residents. In essence, the physical environment of a special care unit has many qualities of Foucault's "panopticon" through the constant observations by the nursing home staff (Fillingham, 1993:126). 33 The similarities between Foucault's concept of "the panopticon" and some special care units is the constant state of surveillance. Briefly, Foucault described the panopticon as an architectural structure that forces people to live in isolation from one another (ibid, 126). Three of the walls in their room are completely enclosed, the forth wall is open enough for the person in the centre tower to monitor the activities of the person enclosed. The person living within the room is aware that he/she is being watched, but they are unable to see the observer (ibid, 126). As a result, the person always has to behave appropriately because they never know when they are being watched. The parallel between Foucault's prison example of the "panopticon" and the "panopticon" experience that some special care unit residents will encounter is that their behaviour is constantly being observed. Similar to Foucault's centre tower, the nurses station which is generally situated in the middle of the unit or in front of the elevators enables the care givers to monitor the behaviour of the residents. A second reason for why special care units would be less likely to use restraints than an integrated unit is because of the specialised training of the staff. A concern for most special care units is to provide their clientele with staff who have training and education in dementia care. Often these unit will have programs that offer in-service training for all their staff members. In other words, not only are the nurses and care aids required to attend these training sessions but so are the housekeeping staff, kitchen support, and management personnel. This training format ensures that all employs have been properly trained in dealing with residents with cognitive decline. Obviously, not all employees are expected to provide personal care but they are expected to have an understanding of memory impairment diseases, such as Alzheimer's. As a result, staff in special care units are more accepting of deviant behaviours. Care-providers are 34 less likely to label a resident as a spitter, hitter and so on, because they understand that their behaviours are symptoms of the disease. Facilities whose staff are not adequately trained in dementia care may use restraints in order to manage inappropriate behaviours because of a lack of understanding. The third reason for why special care units would not administer restraints is that the units population consists only of residents with dementia; unlike integrated care units whose clientele contains residents who are alert and confused. The mixing of alert and confused residents can place additional strains on care-providers. There have been many debates as to whether persons with memory impairment should be located in segregated or integrated units. It is my view that the type of unit a resident resides in determines the use of restraints. For example, cognitively intact residents housed in an integrated unit may find the behaviour of the demented resident disturbing. When alert residents are forced to have frequent contact with confused residents, the safety of the memory impaired resident can be jeopardised. Lawton (1981) found in a survey of staff members that care-providers were concerned about the frustration levels of alert residents when they were forced to live with the memory impaired. Often to alleviate some of the tensions between the lucid and confused residents, chemical and physical restraints are acbninistered to the confused. Due to the strains that memory impaired people can place on a unit not specifically designed for dementia, care-providers use restraints to manage disruptive behaviours. In contrast, special care units are created with the intent of housing residents with memory impairment. Therefore, special care units have alternative means for managing disruptive behaviours. For example, most special care units have "quiet rooms" in which an agitated resident can be placed until he/she calms 35 down. A "quiet room" is typically painted in neutral colours and the only object inside this room is a chair for when the resident tires and wants to sit down. "Quiet rooms" are also referred to as low stimulus rooms. Reason For Why Special Care Units Would Use More Physical and Chemical Restraints Results from the Intermediate Care Facility Survey (1995-1996) indicated that special care unit residents tend to suffer from more severe dementia than do residents with dementia in the integrated wards. In order to control the behaviour of such a large number of demented residents special care units may resort to the use of restraints. A possible explanation for this could be understaffirig. In theory special care units are to operate on a one care-provider to five residents ratio; however, in practice the ratio is often much higher. In a survey conducted by Coons (1991), she found that special care units that operate close to one staff person per five residents consistently reported patient gains (i.e., lower levels of agitation). Unfortunately most long term care facilities operate on a much higher staff to patient ratio. The consequence for the demented resident is that the overworked care-giver uses restraints in order to manage their workload (Jones, 1991: 126). The second reason for why special care units may have to administer restraints is due to a traditional care system. Operators of special car units generally go to great efforts to create a therapeutic environment for their clientele. As mentioned previously, staff members often have specialised training and education in dementia care. However, a therapeutic environment and specialised training of staff have little impact if the staff is forced to provide personal care within 36 a traditional system. A traditional care system means that care-givers are given a set amount of time to complete their daily tasks. Personal care for residents is delivered in almost an assembly line fashion (Coon, 1991:62). This type of care emphasises quantity rather than quality. The traditional system does not take into consideration the special needs of residents with dementia. People who suffer from dementia do not have the ability to understand why someone wants to assist them with dressing. Therefore, a task that should take 20 minutes to complete with an alert person may take hours with someone who is confused. As a result if a resident is agitated and the care aid is unable to complete his/her tasks than they may resort to chemical or physical restraints in order to get the resident to comply. The third and final argument for why restraints would be used in a special care units is a result of legal liability. In Canada all long-term care facilities are licensed under The Community Care Facility Act. Specialised care units are required under The Community Care Facility Act to have written policies regarding their restraint use. Generally, facilities define their physical restraint policy as non-restraint or rninimal restraints. Chemical restraints are usually described as pertaining to doctor's orders only. These policies are made available to the medical health officer as well as to the special care units staff. In addition, these policies are available upon request to family members of permanent residents. Therefore, if a facility has been defined by the director as implementing a ininimal restraint policy and a client should be seriously injured in a fall, a concern is that the family may hold the facility legally responsible. Thus, some directors of special care units may feel that if they fail to restrain a demented resident they may be placing their facility at risk for legal liability. 37 3.3 Conclusion In this chapter I have provided a brief introduction to the foundations of program evaluation. The purpose of evaluation research is to examine the impact of social change (Babbie, 1992: 346). I then applied this definition of program evaluation to my study by comparing the quality of care that dementia residents receive while residing in open or closed facility units. In order to evaluate the units effectively, I developed arguments in support and against the two main hypotheses of my research project. The first hypothesis explored, was that there will be more inappropriate behaviours displayed among residents in special care units when compared with demented residents of integrated wards. An argument in favour of this hypothesis, is that special care units house people with higher levels of memory impairment than integrated wards. As a person's impairment advances, the frequency of inappropriate behaviours also tends to increase. An argument contradicting the first hypothesis is that integrated care faculties contain just as many people with high levels of memory impairment as special care units. Therefore, an integrated care facilities' population may reflect the same behavioural problems of special care units. The second hypothesis was that there would be a decreased use of physical and chemical restraints among residents in special care units when compared with residents of an integrated ward. An argument that supports this hypothesis is that special care units are specifically designed to house people with memory impairment. Thus, the staff has alternative approaches to manage difficult behaviour. An argument against this second hypothesis is that special care units will use restraints in order to avoid the risk of legal liability. 38 The purpose behind the development of these arguments is to assist in the evaluation of the quality of care that dementia residents receive while residing in either an integrated or special care unit. In the next chapter, Chapter 4: Methodology, I will provide information on how data from The Intermediate Care Facility Project was obtained. In addition, Chapter 4 will provide an overview to survey that instruments that The Intermediate Care Facility Project used, as well as the variables and measures that I thought were the most appropriate to my research study. 39 CHAPTER 4 - METHODOLOGY This present chapter discusses the manner in which these data were obtained by the University of Victoria's Centre on Aging. The chapter includes a brief description of the instruments that were utilized for the purpose of data collection. These instruments contained questions dealing with demographic information, as well as items structured to measure the type of care provided to persons with dementia. In addition, this chapter will explore the sampling methods used by the researchers involved in The Intermediate Care Facility's Project at the research centre. Following the discussion on the Intermediate Care Faculty's instruments and sampling method, I will then describe my study and the relevant instruments and measures. I conclude this chapter with an overview to the statistical tests to be conducted using these data. I employ secondary data analysis for the purposes of this study. The research centre at the University of Victoria's Centre on Aging has provided data from their Intermediate Care Facility Project. Dr. Neena Chappell, Professor of sociology, is the first director of the research Centre on Aging at the University of Victoria. She is also the primary investigator for The Intermediate Care Facility Project. For three years I was employed by Dr. Chappell as a researcher on the Intermediate Care Facility Project. My job responsibilities included the following: assisting with the revision of manuals and instruments, introducing the project to Intermediate Care Facilities across the lower mainland, training research assistants, and adnrinistrating the questionnaires. In November 1997 Dr. Chappell granted me permission to use the Intermediate Care Facility Project data for the purpose of my Masters of Arts thesis. Both 40 the University of Victoria and the University of British Columbia have granted ethics review approval for this project). The Centre on Aging conducted a longitudinal study to identify the dimensions of care that will lead to quality care for those with dementia residing in intermediate care facilities. The National Health and Research Development Program, and Health Canada provided the funding for the Intermediate Care Facility study from July 1995 to December 1998 (Vido and Reid, 1996: 2). The Intermediate Care Facility study consisted of two phases. In the first phase of the study, the Intermediate Care Facility survey was administered to 194 long term care facilities in the province (British Columbia) that had residents with memory impairment (The Intermediate Care Facility Project Phase 1, 1996: 2). The survey was intended to provide The Centre on Aging with information on the type of care currently provided for persons with dementia residing in facilities. Information on facility size, staff training and education, care planning, use of restraints, resident activities, approaches to care, and physical environment were collected. The survey was initiated in October 1995 and the data collection was completed in January 1996 (Vido and Reid, 1996: 2). Findings form the Intermediate Care Facility survey assisted in designing the instruments to be used in the second phase of this study. The second phase began in May 1996 and involved approximately 160 intermediate care facilities throughout British Columbia, including special care units and integrated units. The main objective of the Intermediate Care Facility Project is to determine which dimensions of care are associated with the best outcomes for person with dementia (Vido and Reid, 1996: 2). Thus, the study has been divided into two parts: dimensions of care and outcomes. Included in the dimensions of care are the following: physical environment, care planning, and the use or non-use of restraints. To measure a resident's outcomes the project researchers included mood, 41 agitation level, continence, nursing dependency, and cognitive functioning (Reid and Marshment, 1996: 2). To be included in the second phase of the study, residents had to meet several conditions: A primary or secondary diagnoses of dementia was a requirement, including but not exclusive to Alzheimer's disease (Reid, 1996: 11). A primary diagnosis, defined by the Intermediate Care Facility Project, was the condition responsible for the admission of the resident. The secondary diagnosis was defined as the second reason for admission to the facility. Subjects could not have a medical condition that would lead to rapid deterioration and /or death, as well as certain diagnosis, such as schizophrenia or cancer (ibid.: 11). Initially, The Centre on Aging thought that their sample size would consist of approximately 1,000 residents with a primary or secondary diagnosis of dementia. However, as the study progressed, the researchers realized that the number of respondents was much lower than what was originally anticipated. The sample size is closer to 700 but that number is expected to decrease due to drop-outs. Drop-outs are defined by the researchers on the Intermediate Care Facility project as subjects who are moved from the facility due to either being discharged (i.e., death, transferring to another facility) or moving from one unit to another (i.e., from an integrated unit into the special care unit). Information on the subjects were gathered through a multi-method approach, including interviews with facility's careproviders, direct observations of residents, administration of questionnaires, and data from medical charts and facility records (Reid, 1996: 12). To assist in determining which dimensions of care are associated with the best outcomes for persons with dementia, researchers from the Intermediate Care Facility Project selected seven instruments. The Resident Demographic Data Collection Instrument was used to gather demographic 42 information, such as resident age, gender, education, occupation, religion, income, and marital status. The Chart Review Instrument provided information on a residents' primary and secondary diagnoses, as well as information on co-morbid conditions that might be a possible cause of dementia that would exclude the resident (i.e., alcohol based dementia etc..) (ibid.: 12). In addition, The Chart Review Instrument displayed the dosage and frequency of medications the facility administered to a resident. Thus, providing the Intermediate Care Facility researchers with information on chemical restraints (Reid and Marshment, 1996: 3). To measure a resident's mood, The Feeling Tone Instrument was employed. The Cohen Mansfield Agitation Index Instrument was selected by the project researchers to measure behaviours that commonly occur with dementia patients, including: agitation, wandering, physical violence, etc...(ibid.: 4) . The primary focus of this instrument is to assess the frequency of aggressive and agitated behaviours by the resident. The Activities of Daily Living Instrument assessed the care level of a resident (i.e., how high functioning the demented subject was). This instrument measured how dependent some residents are on nursing staff care. To capture the use of all types of physical restraints The Resident Restraint Questionnaire was used. This instrument measured the type and number of restraints used on a resident, as well as the location where the restraint was applied (ibid.: 4). Finally, two other instruments are relevant The Common Core Environment Instrument was designed to assess the physical environment in long term care facilities. To observe the treatment of residents by the long-term care staff The Resident and Staff Observation Checklist was used. A chart is provided to demonstrate the order in which the Intermediate Care Facility project's instruments for the baseline measurement of the second phase were administered. 43 Table 4. Intermediate Care Facility Instruments INSTRUMENTS SUBJECTS Consent Form -Administered to the person who had authorization to sign on behalf of the demented resident Demographic Instrument -The person who signed the consent form, typically this person was a family member, friend or public trustee Chart Review Instrument -The research assistant examines the facilities medical charts The Feeling Tone Instrument - The resident with memory impairment in either the Special Care Unit or the Integrated Unit The Cohen Mansfield Agitation Index Instrument - The nursing staff- usually a care aid provided the information, care aids were selected over RN (registered nurses) because they tended to be the primary care providers The Activities of Daily Living Instrument -Care aids The Resident Restraint -Care aids The Common Core Environment Instrument and The research assistance does a walk through of the facility, evaluating its physical appearance The Resident and Staff Observation Checklist -The research assistance walks around the facility observing the residents and nursing staff The following is a break down of the time spent gathering information on each subject. Approximately thirty minutes was spent interviewing the resident using the Feeling Tone Instrument and the Multi-Focus Assessment Scale, however, the length of time also depended on their level of dementia. Around thirty minutes was spent with the person, usually a family member, who signed the consent form, to explain the Intermediate Care Facility Project and gather demographic information on the resident. About thirty minutes was spent collecting information from the intermediate care facility's staff (The Activities Of Daily Living Instrument, The Cohen Mansfield Agitation Index Instrument, and the Resident Restraint Instrument) and 44 about twenty minutes examining the residents medical records. In total it took about two hours to obtain information on each subject (The Handout for Families of Residents. 1996: 1). The study sample selected for the project experienced two measurements. The baseline measurement, which was taken within a 6-week window period of a resident's new admission to either a special care unit or integrated unit. The second measurement was taken approximately 12 months after the initial measurement (Vido and Reid, 1996: 3). The Centre on Aging was interested in comparing findings from the baseline measurement with data collected from the second measurement. This measurement format was used in hopes of providing information on what dimensions of care resulted in better outcomes for residents suffering with dementia (for example, having an adequate sized out door area combined with a high level of staff-resident interaction may result in better outcomes than another combination of these factors) (Reid and Marshment, 1996: 2). For the Centre on Aging's Intermediate Care Facility study the unit of analysis was the integrated care facility. However, for the purposes of my thesis on restraint use in facilities, the unit of analysis will be the individual. In my study I am interested to examine the quality of care that demented residents receive while residing in either an integrated or segregated care unit. Specifically, I am interested to compare the restraint practices that occur within open and closed units. I propose that a resident's quality of care is reduced when an individual experiences physical and chemical restraints. Data from the second phase of the Intermediate Care Facility Project will be examined in this study on restraint practices for persons with dementia residing in and outside Special Care Units. More specifically, only data obtained through the baseline data collection from the second phase will be analyzed. Information gathered during the first phase provided 45 Intermediate Care Facility researchers with a profile of a long term care facility and subsequently assisted in the construction of the project's instruments for the second phase. Thus, the information collected from the first phase is not relevant to my project on restraint use. Also, data obtained from the follow-up interviews are of no relevance, since these instruments were designed to measure a resident's outcome in relation to his/her response to their baseline interview. Unlike the Intermediate Care Facilities longitudinal study my study is cross-sectional in nature. I am interested in those subjects who participated in the baseline data collection of phase two. These subjects were obtained from Intermediate Care Facilities across British Columbia. On a weekly basis a researcher contacted the director of care, head nurse or social worker to attain the names of all new admissions. This process was generally done over the phone, however, if the researcher was already in the facility they would obtain the names in person. The information gathered through the phone interview determined if the resident was a potential participant. In order to be eligible the resident had to be 65 years old or older, with moderate or severe dementia, and a permanent resident to the unit (i.e., not in respite care). Once the resident was included in the study, the researcher would contact the family or guardian of that resident and ask whether or not they would consent for their impaired relative to participate in the study. During this initial conversation the researcher would explain the purpose of the project to them and also arrange a place and time to sign the consent form and complete the resident Demographic Data Collection Instrument. During the face-to-face interview the researcher reassured the family that their relative's involvement in the study would not affect any care their family member was currently receiving. Also, confidentiality was stressed to the family member, guaranteeing them that no 46 names or identities would be used in any reports or documents resulting from this study. From my experience, most families were enthusiastic to support the project. They believed that their involvement might hopefully make the quality of care that nursing home residents receive better. However, some families did decline stating that it was too much stress for their loved one or they were feeling guilty for placing their parent in an institutional setting. Initially, we had anticipated a sample size of approximately 1000, however, we were only able to obtain roughly half of that number. The lower than anticipated sample size was due to family declines to have their parent participate, drop-outs, and lower than normal new admission into intermediate care facilities. Yet, the same size still offers an adequate representation of memory impaired residents residing in Special Care Units and integrated units. The instruments that I will use for my study include: (1) The Resident Demographic Data Collection Instrument, (2) The Chart Review Instrument, (3) The Restraint Questionnaire, (4) The Cohen Mansfield Agitation Index Instrument, and (5) The Resident and Staff Observation Checklist. The Resident Demographic Data Collection Instrument will provide me with a social history of the subjects; thus, assisting me in creating a profile of the institutionalized demented residents involved with the Intermediate Care Facility study. The Chart Review Instrument contains information on chemical restraints, such as, the type, frequency and dosage of medications that a resident is receiving. This instrument will enable me to examine if a resident is receiving chemical restraints. The Restraint Questionnaire will provide me with information on restraint practices in integrated care facilities. To measure behaviors that are commonly displayed by demented residents The Cohen Mansfield Agitation Index Instrument will be used. The Resident and Staff Observation Checklist will enable me to explore contradictions with a 47 facilities policy and there care practices. I am interested to study the relationship between aggressive behaviors and restraint practices. I will use descriptive statistics to provide a profile of my study population. Descriptive statistics allow a general summary of the quantitative information (Vogt, 1993: 67). A variety of statistical tests will be performed, including: measures of central tendency, (i.e., mode, median, and mean) as well as measures of dispersion (i.e., range, standard deviation, quartiles, and histograms). Bivariate and multivariate cross-tabulation will be conducted on variables such as type of unit, dementia, restraint practices, etc. so that I can observe what sort of association they have with each other. My study will also employ logistic regression analysis. This type of regression analysis is used for predicting the probability an event will happen or not. I will examine the factors explaining whether a demented resident in an integrated unit will be restrained. Ideally, logistic regression analysis is used to examine anything that can be expressed as an event/nonevent (Vogt, 1993: 131). Logistic regression is appropriate when the dependent variable is binary (rather than a continuous interval level dependent variable). The benefit of using logistic regression analysis is that it allows me to estimate parameters using maximum likelihood estimations. Another advantage to using Logistic Regression Analysis is that it requires fewer assumptions than discriminant analysis (Vogt: 131). Logistic regression techniques will be used to examine the relative effects of my independent variables (i.e., dementia, age, gender etc.) on my dependent variable, the use of restraints. Below is a causal model containing a graphic representation of cause and effect relations among variables. This is a model of restraint practices used on institutionalized residents suffering from dementia. 48 Figure 1. Casual Model of Restraint Practices Control Variables Demographic Variables Age Gender Marital Status Education Independent Variable Dementia Intervening Variable Behavioural Problems Intervening Variable Type of Unit Dependent Variable Use of Restraints The following is a list of the instruments and their accompanying questions that were selected for my study on restraint practices. Included with the questions are the variable codes that were used by the Intermediate Care Facility Project and that I will use to assist me in analyzing these data. 49 8 S I S 32 H H s T3 <*H O >> "(H on =Jfc C3 O > on S <U « PH Q O HS C Q ed ra o U I > a o «H \ J 3 •g o O W CO 13 .5 <o « <L> 93 3 « £ ra o 2 TB (U w C < 13 > T3 0) (H U O ra T3 IH a *S (L> 00 00 < I a> O - H <U o 3 is . S o 53 U > 'so Q bp s o O .s -a r—< V © ^ I 03 K <u •j-c ^ T3 <U t d O o 5 <U cu .s T3 CU o 12-*c/J =tfc 4> GO % n o O cu 00 .s o a o 'op| cu te u 'o .« j> a t>0 '" J •a <<-i o <u ft 3 cu CU i * 'I CW Oil -a <L> JO o cn cc) <U I H cu cd < Os > < I 2 > o =3 o JQ 3 ^ 3 <2 .g .1 § i f $ I H cu td I H Q, ^ I H — H O « H C CU & 8 ^  •i I H +-> cn Pi CU -q <u .fci <3 .S cd cn aj .fc! cd cu 3 P* a c o cu cu 3 cS a I 0 .5 Cd I H P H CJ 1 >H 5£ Table 5 b. Variables and Codes Used For My Study On Restraint Practices CONCEPT TYPE OF VARIABLES INDICATOR CODE Demographic Profile Control Variable Age Gender Education Level Marital Status Combined Annual Income 64 to 74 = 1 75 to 84 = 2 85 to 99 = 3 Male = 0 Female = 1 No/some/completed elementary = 1 Some junior high school/some high school = 2 High school completed = 3 Higher education = 4 Never Married = 1 Married/Common law = 2 Widowed = 3 Divorced or Separated = 4 5,000-9,000= 1 10,000-14,999 = 2 15,000-19,999 = 3 20,000 - 24,999 = 4 25,000-34,999 = 5 35,000 - and above = 6 Dementia Independent Variable Level of Dementia Moderate = 0 Severe = 1 Type of Unit Intervening Variable Housing of Resident with Dementia Integrated Care Unit = 0 Special Care Unit = 1 Behavioural Problems Intervening Variable Physical Aggression General Restlessness Cursing Screaming Never engages in Physical Aggression = 0 Does engage in Physical Aggression = 1 Never engages in General Restlessness = 0 Does engage in General Restlessness = 1 Never engages in Cursing = 0 Does engage in Cursing = 1 Never engages in Screaming = 0 £3 Pace/Wandering Hiding/Hoarding Does engage in Screaming = 1 Never engages in Wandering = 0 Does engage in Wandering = 1 Never engages in Hiding/Hoarding = 0 Does engage in Hiding/Hoarding = 1 Restraints Dependent Variable Physical Restraints Chemical Restraints No Physical Restraints = 0 Yes Physical Restraints Used = 1 No Chemical Restraints = 0 Yes Physical Restraints Used =1 4.1 Conclusion In this chapter, I have described the Intermediate Care Facility Project that the University of Victoria's Centre on Aging conducted. The main objective of their study was to determine which dimensions of care were associated with the best outcomes for persons with dementia. One hundred and sixty long-term care facilities throughout British Columbia were involved in the study. From these facilities 510 residents with a primary or secondary diagnosis of moderate to severe dementia were selected. Health Canada and the National Health and Research Development Program provided three years funding for the study. Finally, this chapter highlights the purpose of my study of the quality of care demented residents receive in integrated and segregated care units. I propose that a resident's quality of care is reduced when an individual experiences physical and chemical restraints. The following chapters (Descriptive Statistics and Multivariate Analysis) provide an analysis of the factors contributing to assignment to different facilities and the causal factors affecting the use of chemical and physical restraints. 54 CHAPTER 5 - DATA ANALYSIS This chapter is divided into three sections: univariate statistics, cross-tabulations, and logistic regression analysis. In the first section, frequency tables are utilized to provide a descriptive profile of the subjects involved in The Intermediate Care Facility Project. The second section introduces bivariate tables that examine relationships between pairs of variables. For instance, one table explores how demographic variables impact on a resident's level of dementia. Cross-tabulation tables also enable me to observe the strength of association and levels of significance various variables have on one another. The third and final section presents logistic regression analyses to predict the probability that restraint use will occur. In this section I explore the probability that physical and chemical restraints will be employed in integrated care facilities. 5.1 Section 1: Univariate Statistics The univariate tables display demographic information about dementia residents in long-term care facilities across British Columbia. Generally, these demographic data were provided by the resident's family or guardian. The steering committee of the Intermediate Care Facility Project decided that this approach was the most accurate method to obtain reliable data. This decision was based on the knowledge that dementia victims commonly experience recent and remote memory loss. If the family member or guardian was uncertain about a question, the researchers would then collect the information from the nursing homes' medical records. If the 55 information was unavailable in the medical charts, then the researcher would approach the resident as a last resort. Tables are presented first, followed by an analysis of the information contained within them. Table 6. Percentage Breakdown of Type of Dementia in British Columbia's Long-term Care Faculties Dementia Diagnosis Frequency Percent 1. Alzheimer's disease 379 74.3 2. Vascular type dementia 58 11.4 3. Other Dementia 73 14.3 Total 510 100.0 The findings in Table 6 reveal that a large proportion of dementia residents suffer from Alzheimer's disease (74%). Alzheimer's disease affects over 50% of people who suffer from severe intellectual impairment (Powell and Courtice, 1981: 12). Perlmutter and Hall found that vascular dementia appears in around 20% of dementia cases (1992: 162). The findings in Table 6 are consistent with past studies that examined the types and frequency of memory impairment experienced by individuals (Perlmutter and Hall, 1992: 162-163). Table 7. Percentage Breakdown of Resident Population in British Columbia's Long-term Care Facilities by Level of Dementia Level of Dementia Frequency Percent 1. Moderate 394 77.3 2. Severe 116 22.7 Total 510 100.0 Mean .8 Median 1.0 Mode 1.0 Standard Deviation .4 56 As Table 7 demonstrates, there are significantly more residents with moderate dementia (77%). This finding is not surprising given the fact that dementia is a progressive disease. As the level of impairment advances to more severe stages, the resident typically experiences total helplessness with regards to their activities of daily living (i.e., bathing, dressing etc.) and eventual death. Another explanation is that some facilities are not able to cope with residents who are defined as "total care." As a result, residents that require total care with their activities of daily living may be transferred to an extended care unit. Table 8. Percentage Breakdown of Type of ward British Colulmbia's Resident Population with Dementia Reside In. Facility Type Frequency Percent 1. Integrated Care Unit 251 50.8 2. Special Care Unit 259 49.2 Total 510 100.0 Table 8 shows that there is an even distribution of residents within special care units (49%) and integrated care units (51%). Because the Intermediate Care Facility Project examined residents with dementia, I assumed that their would be more residents residing in special care units than integrated units. Table 9. Percentage Breakdown of Residents with Dementia's Gender that Reside In Long-term Care Facilities In British Columbia Gender Frequency Percent 1. Male 194 38 2. Female 316 62 Total 510 100 57 Table 9 shows that of the 510 subjects 194 were men (38%) and 316 were women (62%). Gender has a well documented relationship with longevity (Holden 1987; Nathanson and Lorenz, 1982); women, on average live longer than men. Therefore, the high representation of women residing in long-term care facilities is in accordance with the medical literature. Table 10. Percentage Breakdown of Age Group of Residents with Dementia in British Columbia's Long-term Care Faculties Age of resident Frequency Percent 1. 64 to 74 years 64 12.5 2. 75 to 84 years 259 50.8 3. 85 to 99 years 187 36.6 Total 510 100.0 Mean 2.2 Median 2.0 Mode 2.0 Standard Deviation .7 Initially, the Intermediate Care Facility Project included all subjects who had moderate to severe dementia. However, as the project progressed the principal researcher, Dr. Neena Chappell, decided to remove subjects under the age of sixty-five. Some forms of dementia, such as Pick's disease, affect people in their thirties and forties. By eliminating these subjects, the project researchers ensured that the sample population would be similar in both the special care and integrated care units with respect to age. The age group 64 to 74 years represented 13% of the total sample. Most of the residents were concentrated in the age groups from 75 to 84 and 85 to 99. The percentage distributions for these age groups are 51% and 37%, respectively. 58 Table 11. Percentage Breakdown of Level of Education of Residents with Dementia in British Columbia's Long-term Care Facilities Education Frequency Percent 1. No, some, completed elementary school 71 14.5 2. Some junior high school some high school 163 33.3 3. High school completed 103 21.0 4. Higher education 153 31.2 Total 510 100.0 Mean 2.7 Median 3.0 Mode 2.0 Standard Deviation 1.1 Missing 20 Table 11 illustrates that, in general, long term care residents with dementia are relatively well educated. The majority of subjects have some junior high school or high school education (33%) and a significant portion have completed high school (21%). Another fascinating finding was that a sizeable minority, 31% had completed post-secondary education. This finding was surprising, given the period of time when most of these residents would have attended post-secondary education. During the Great Depression many families needed their adult children to contribute to the family income. In the fifties, following World War Two, jobs were more plentiful and higher levels of education may not have been necessary. Based on these historical events, I expected that most of the nursing home residents would have lower levels of education. 59 Table 12 . Percentage Breakdown of Current Marital Status of Residents with Dementia in British Columbia's Long-term Care Facilities Current Marital Status Frequency Percent 1. Never Married 19 3.7 2. Married/Common-Law 214 42.0 3. Widowed 242 47.5 4. Divorced or Separated 35 6.9 Total 510 100.0 Mean 2.6 Median 3.0 Mode 3.0 Standard Deviation .7 Table 12 provides a breakdown of the marital status of long-term care residents with dementia. Very few of the subjects never married (4%). Most research subjects were living common law or married (42%). As Table 10 demonstrated, most of these residents are elderly (i.e., over 75 years of age ), therefore, the high percentage of widowed subjects (48%) is not surprising. The fourth group consisted of separated or divorced subjects (7%). One might naturally expect to observe a higher percentage of subjects from the separated or divorced group due to the strain that illness might have on the relationship. As well as, the fact that approximately 50% of marriages end in divorce today. Yet, many of these residents would have grown up in a period of time when separation and divorce were frowned upon. As a result, many couples stayed together. 60 Table 13. Percentage Breakdown of Combined Annual Income of Residents with Dementia Residing British Columbia's Long-term Care Facilities Combined Annual Income Frequency Percent 1. $5,000-9,999 37 8.9 2. $10,000-14,999 125 30.0 3. $15,000-19,999 81 19.4 4. $20,000-24,999 50 12.0 5. $25,000-34,999 59 14.1 6. $35,000 and above 65 15.6 Total 510 100.0 Mean 3.4 Median 3.0 Mode 2.0 Standard Deviation 1.6 Missing 93 The findings in Table 13 indicate that the largest percentage of residents generate a combined annual income between $10,000 and $14,999 (30%). The combined annual income was based on several sources of income including: Old Age Pension, Gains Supplement Income, Canada Pension Plan, Company Pension, personal savings, employment income, and investment income. A sizeable refusal rate on this question demonstrates that family members were uncomfortable providing information about their parents' income. There are several reasons that could explain the high refusal rate. In Canada most long-term care facilities are government-funded. Therefore, residents who are unable to pay the flat rate are charged a "user fee" which is a percentage of their annual income. It was explained to the guardian that The Intermediate Care Facility Project was sponsored by Health Canada, and therefore, family members may have felt that the government was attempting to verify their parent's income. Another explanation (one that was offered by children of the subjects), was that the family member was not involved in their parent's financial situation and therefore did not know their parent's full financial information. 61 5.2 Section 2: Bivariate Relationships This next section continues to examine data from the Intermediate Care Facility study. However, unlike the previous section which presents univariate analyses of these data, this section explores bivariate relationships using contingency tables. This type of analysis enables us to examine the relationship between pairs of variables. The following are the variables and order in which they are presented in the tables: demographic variables (i.e., age, gender, marital status, education level, and income) by level of dementia (moderate or severe), inappropriate behaviours (i.e., physical aggression, verbal aggression, general restlessness, wandering and hiding/hoarding) by level of dementia, inappropriate behaviours by type of facility (i.e., special care unit or integrated care unit), physical restraints by inappropriate behaviours, chemical restraints by inappropriate behaviours, and type of facility by physical and chemical restraints. The data for this section were obtained through face-to-face interviews with either a nurses aid or a registered nurse. Nurses aids or registered nurses are the ones that provide the daily care for nursing home residents, and are therefore the most familiar with their care needs. Generally, the interviews with the nursing staff took approximately 15- 20 minutes to complete. 62 Table 14. Percentage Breakdown of Resident Population with Dementia by Age of Resident and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Age Total 1. 64 to 74 years 50 12.7% 14 12.1% 64 12.5% 2. 75 to 84 years 197 50.% 62 53.4% 259 50.8% 3. 85 to 99 years 147 37.3% 40 34.5% 187 36.7% Total 394 100% 116 100% 510 100.0% x 2 .433, p = N.S. Table 14 demonstrates that a large proportion of subjects have moderate dementia (77%). Among these subjects 13% are in the age group 64 to 74 years, 50% are in the age group 75 to 84 years, and 37% are in the eldest age group 85 to 99 years. One might expect that as a person ages they experience memory deterioration. Based on this expectation, it was assumed that those subjects in the age group 85 to 99 years be more likely to suffer severe dementia However, as Table 14 illustrates there is relatively little difference between those with moderate (37%) and severe (35%) dementia. Table 15. Percentage Breakdown of Residents Population with Dementia by Gender of Resident and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Gender Total 1. Male 150 44 194 38.1% 37.9% 38.0% 2. Female 244 72 316 61.9% 62.1% 62.0% Total 394 116 510 100% 100% 100% x 2 .001, p = N.S. 63 Of the 510 subjects involved in The Intermediate Care Facility Project 194 were men (38%) and 316 were women (62%). Table 15 shows that approximately 38% of men and 62% of women suffer from moderate levels of memory impairment. The table also reveals that 38% of men and 62% of women have severe dementia. These findings indicate that there is little difference between men and women in regards to level of impairment. Table 16. Percentage Breakdown of Resident Population with Dementia by Marital Status and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Marital Status Total 1. Never Married 17 2 19 4.3% 1.7% 3.7% 2. Married/Common Law 159 55 214 40.4% 47.4% 42.0% 3. Widowed 188 54 242 47.7% 46.6% 47.5% 4. Divorced or Separated 30 5 35 7.6% 4.3% 6.9% Total 394 116 510 100% 100% 100% y2 4.13, p = N.S. Among residents with moderate dementia 4% were never married and 8% were separated or divorced. Common-law and married residents represented 40% of subjects with moderate dementia. The highest percentage (48%) is in the marital status of widowed. For those with severe memory impairment 2% were never married and 4% were separated or divorced. Table 16 indicates that 47% were common-law/married and 47% were widowed. An interesting finding was that more common-law/married residents suffered from severe (47%) rather than moderate (40%) memory impairment. Table 11 shows that the relationship between marital 64 status and level of memory impairment was not statistically significant. With the mental stimulation offered through the verbal interaction with a spouse one might assume that a married person's level of memory impairment would be lower. Yet, the findings in table 16 reveal that common-law/married subjects are the highest group (47%) to suffer from severe memory impairment. Table 17. Percentage Breakdown of Resident Population with Dementia by Level of Education and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Education Total 1. No/some/completed elementary school 55 16 71 14.5% 14.5% 14.5% 2. Some junior high-school/ some high school 135 28 163 35.5% 25.5% 33.3% 3. High-school completed 81 22 103 21.3% 20% 21% 4. Higher education 109 44 153 28.7% 40% 31.2% Total 380 110 490 100% 100% 100% x2 6.17, p = N.S. The data in Table 17 reveal that subjects with some junior high school or some high school are more likely to suffer from moderate dementia (36%). Among those with severe dementia, residents with some junior high school or some high school are the second largest group at 26%. The majority of subjects with severe dementia (40%) obtained higher levels of education, which included: diplomas, degrees and professional degrees. A proposition for this study was that higher educated persons would be less likely to suffer severe dementia. Obviously, the findings for this study do not support the proposition. 65 Table 17 shows that subjects who obtained higher levels of education were more likely to suffer from severe memory impairment (40%). Therefore, what is demonstrated in this table is that the relationship between education and level of memory impairment are not significant. Table 18. Percentage Breakdown of Resident Population with Dementia by Annual Income and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Annual Income Total 1. $5,000 to 9,999 28 9 37 8.6% 9.7% 8.9% 2. $10,000 to 14,999 103 22 125 31.8% 23.7% 30% 3. $15,000 to 19,999 67 14 81 20.7% 15.1% 19.4% 4. $20,000 to 24,999 38 12 50 11.7% 12.9% 12% 5. $25,000 to 34,999 43 16 59 13.3% 17.2% 14.1% 6. $35,000 and above 45 20 65 13.9% 21.5% 15.6% Total 324 93 65 100% 100% 15.6% x2 6.42, p =N.S The progression of dementia is an individualistic process. Some gerontologists argue that the more stimulation a person inflicted with dementia receives the slower the deterioration process. I assumed that the higher the annual income of a person/family the lower their level of dementia. This rational was based on the assumption that families with more disposable income could afford additional services for persons with memory impairment (i.e., adult day centre, specialist and so on). The benefit of providing a variety of services for a person with memory 66 impairment is that the stimulation offered may slow down the metal deterioration process of the disease. Table 18 reveals that the majority of the subjects with moderate dementia (32%) had a combined annual income of $10,000 to $14,999. In addition, a significant proportion of subjects with severe dementia (24%) were also within this income bracket. My initial assumption was that the higher the income level of a person the less likely they would experience severe dementia due to the extra services that they could afford to utilizes. Yet, the findings reveal that subjects with a combined annual income of $35,000 and above had the second largest group of people with severe dementia (22%). Table 19. Percentage Breakdown of Resident Population with Dementia by Facility Type and Level of Dementia in British Columbia's Long-term Care Facilities Level o •Dementia Moderate Severe Facility Type Total 1. Integrated Care Facility 211 40 251 53.6% 34.5% 49.2% 2. Special Care Unit 183 76 259 46.4% 65.5% 50.8% Total 394 116 510 77.3% 22.7% 100.0% x 2 13.04, p< .001 Special care units were designed specifically to deal with memory impaired people. These units generally have special features to assist in providing care for their residents, such as alarms to reduce elopement risk, and so on. Therefore, my first hypothesis was that special care units would contain more residents with severe dementia. The findings in Table 19 support this point. Sixty-six percent of residents with severe dementia were in special care units compared 67 with 35% (of those with severe dementia) that were in integrated care units. Iri contrast, residents with moderate dementia were more likely to reside in integrated care units (54%) rather than special care units (46%). Yet, the difference in the distribution across the two types of care facilities for moderate dementia is not as pronounced as the distribution between special care units and integrated care units in regards to those with severe dementia. 68 Table 20. Percentage Breakdown of Resident Population with Dementia by Physical Aggressive Behaviours and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Total A. Hitting/kicking and pushing 1. Never 317 80.5% 73 62.9% 390 76.5% 2. Once a week 26 6.6% 15 12.9% 41 8.0% 3. Weekly 38 9.6% 15 12.9% 53 10.4% 4. Daily 13 3.3% 13 11.2% 26 5.1% Total 394 100% 116 100% 510 100.0% y.2 19.99, p<.001 B. Grabbing people and or throwing things 1. Never 330 83.8% 76 65.5% 406 79.6% 2. Once a week 23 5.8% 8 6.9% 31 6.1% 3. Weekly 23 5.8% 19 16.4% 42 8.2% 4. Daily 18 4.6% 13 11.2% 31 6.1% Total 394 100% 116 100% 510 100.0% y.2 22.50, p<.001 C. Other aggressive behaviours 1. Never 364 92.4% 95 81.9% 459 90.0% 2. Yes aggressive behaviours do occur 30 7.6% 21 18.1% 51 10,0% Total 394 100% 116 100% 510 100.0% y.2 10.99, p<.05 Aggressive behaviours are often displayed by people with memory impairment. However, Table 20 reveals that most of the residents involved in The Intermediate Care Facility Project did not exhibit inappropriate physical aggression. The column totals for never engaging in physical aggression for variables hitting, grabbing and other aggressive behaviours (such as inappropriate sexual advances) are 7 7 % , 8 0 % , and 9 0 % , respectively. For the few subjects that did act in a physically aggressive manner most had severe dementia. Table 2 0 demonstrates that the nursing staff reported that on a daily basis hitting, kicking, and pushing occurred more frequently with residents with severe dementia (11%) compared with those with moderate dementia (3%). One explanation for why there were so few residents engaging in physically aggressive behaviours is that when other residents, nursing home staff or the individuals' safety is at risk they are typically removed from the facility. Generally, aggressive residents are transferred to psychiatric hospitals. These medical institutions provide various forms of treatment to try and control or contain the inappropriate behaviours. Once the proper medications have been proven effective in reducing the aggressive behaviour the resident is than returned to the nursing home. Table 21. Percentage Breakdown of Resident Population with Dementia by General Restlessness and Level of Dementia in British Columbia's Long-term Care Faculties Level of Dementia Moderate Severe General Restlessness Total 1 . Never 2 3 3 4 8 2 8 1 5 9 . 1 % 4 1 . 4 % 5 5 . 1 % 2. Once a week 31 13 4 4 7 . 9 % 1 1 . 2 % 8 . 6 % 3. Weekly 3 4 9 4 3 8 . 6 % 7 . 8 % 8 . 4 % 4 . Daily 9 6 4 6 142 2 4 . 4 % 3 9 . 7 % 2 7 . 8 % Total 3 9 4 1 1 6 5 1 0 1 0 0 % 1 0 0 % 1 0 0 % x 2 1 3 . 8 9 , p<.01 The Intermediate Care Facility Project's steering committee defined general restlessness as any behaviour that is repetitious in manner. As a person progresses to more advance stages in 7 0 dementia it is very common for them to perform repetitious acts; these include rocking, tapping, picking, yelling and so on. Some gerotologists believe that these actions/mannerisms are done to reduce the anxiety that the person is experiencing. In essence, these repetitious mannerisms serve as an internal calming device (Coons, 1991: 69). Based on this argument, I assumed that people with severe dementia would be more likely to exhibit general restlessness. The findings in Table 21 support my proposition. Approximately 40% of residents with severe dementia exhibited general restlessness on a daily basis; whereas, only 24% of residents with moderate dementia displayed repetitious mannerisms. The one exception was for the 9% of residents with moderate dementia experience general restlessness on a weekly basis, compared with the 8% of residents with severe dementia who exhibited repetitious mannerism on a weekly basis. 71 Table 22. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Total A. Cursing 1. Never 226 57.5% • 51 44% 277 54.4% 2. Once a week 53 13.5% 18 15.5% 71 13.9% 3. Weekly 66 16.8% 22 19.5% 88 17.3% 4. Daily 48 12.2% 25 21.6% 73 14.3% Total 393 100% 116 100% 509 100.0% x 2 8.97, p<.( 35 B. Screaming 1. Never 363 92.1% 93 80.2% 456 89.4% 2. Once a week 10 2.5% 6 5.2% 16 3.1% 3. Weekly 12 3.0% 9 7.8% 21 4.1% 4. Daily 9 2.3% 8 6.9% 17 3.3% Total 394 100% 116 100% 510 100.0% x 2 13.97, p<.01 Table 22 indicates that residents with severe dementia have a tendency to be more verbally aggressive than those residents with moderate dementia. Twenty-two percent of residents with severe memory impairment curse on a daily basis. Among those residents with moderate memory impairment 12% cursed on a daily basis. Although, there were more residents with severe dementia engaging in screaming, I was somewhat surprised by the low cell counts (refer to lower half of Table 22). As cognitive impairment progresses a common symptom is that the person becomes aphasic. Aphasia is the inabiUty to communicate by means of writing or speaking; it is a language disturbance (Jones, 72 1996: 153). Since, aphasic residents are no longer able to express themselves through language I thought they might attempt to communicate through noise such as screaming. However, Table 22 shows that 89% of residents with severe memory impairment never used screaming as a means of expressing themselves. Table 23. Percentage Breakdown of Resident Population with Dementia by Wandering and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Wandering Total 1. Never 147 26 173 37.3% 22.4% 33.9% 2. Once a week 24 11 35 6.1% 9.5% 6.9% 3. Weekly 42 8 50 10.7% 6.9% 9.8% 4. Daily 181 71 252 45.9% 61.2% 49.45 Total 394 116 510 100% 100% 100.0% y2 12.89, p<.01 As a person's level of impairment increases the prevalence of inappropriate behaviours also tends to increase (Teri, Larson, Burton and Reifler, 1988: 2-3). Based on this view, I assumed that residents with severe dementia would wander more than those with moderate dementia. Table 23 reveals that in most cases people with severe memory impairment did wander more frequently than those with moderate memory impairment. The one finding that contradicts my initial assumption is that 11% of residents with moderate dementia wandered weekly; whereas, only 7% of residents with severe dementia wandered on a weekly basis. The findings from Table 23 reveal that level of memory impairment does have a positive and significant relationship with wandering. 73 Table 24. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding and Level of Dementia in British Columbia's Long-term Care Facilities Level of Dementia Moderate Severe Hiding and Hoarding Total 1. Never 313 87 400 79.4% 75% 78.4% 2. Once a week 17 9 26 4.3% 7.8% 5.1% 3. Weekly 30 11 41 7.6% 9.5% 8.0% 4. Daily 34 9 43 8.6% 7.8% 8.4% Total 394 116 510 100% 100% 100.0% y.2 .2.78, p= N.S. Table 24 indicates that most residents with moderate or severe memory impairment do not engage in hiding or hoarding (78%). For those residents that do hide and hoard most do so on a weekly (8%) and or a daily (8%) basis. Dementia residents with severe cognitive decline are more likely to exhibit hiding and hoarding than those with moderate dementia. However, the difference between the impairment levels is quite small in fact statistically insignificant. For example, 10% of residents with severe dementia experience hiding and hoarding on a weekly basis. Within the moderate dementia column 8% of residents displayed hiding and hoarding on a weekly basis. 74 Table 25. Percentage Breakdown of Resident Population with Dementia by Physical Aggression and Facility Type in British Columbia's Long-term Care Faculties Facilit yType Integrated Care Unit Special Care Unit Physical aggression Total 1. No physical aggression 195 77.7% 171 66.0% 366 71.8% 2. Physical aggression 56 22.3% 88 34.0% 144 28.2% Total 251 100% 259 100% 510 100.0% 7 2 8.56, p<.01 Table 25 indicates that residents who reside in special care units have a tendency to be more physically aggressive than residents who live in integrated care units. Thirty-four percent of memory impaired residents living in special care units were physically aggressive toward themselves, other residents, and/or nursing home staff. In contrast, 22% of cognitively impaired residents within integrated care units displayed aggressive behaviours. Table 26. Percentage Breakdown of Resident Population with Dementia by General restlessness and Facility Type in British Columbia's Long-term Care Facilities Facility Type Integrated Care Unit Special Care Unit General restlessness Total 1. No general restlessness 165 116 281 65.7% 44.8% 55.1% 2. General restlessness 86 143 229 34.3% 55.2% 44.9% Total 251 259 510 100% 100% 100.0% 7 2 22.61, p<.001 Table 26 demonstrate that the distribution of subjects between special care units (51%) and integrated units (49%) is relatively even. Yet, the nursing home staff reported that residents 75 in integrated units (34%) were less likely to exhibit restless behaviour than residents in special care units (55%). This finding is not surprising given that special care units were designed to house people with various forms of memory impairment. Restlessness is a common symptom of diseases such as Alzheimers, and as this disease progresses symptoms tend to become more pronounced. Table 27. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and Facility Type in British Columbia's Long-term Care Facilities Facility Type Integrated Care Unit Special Care Unit A. Cursing Total 1. Never curse 148 129 277 59.0% 50.0% 54.4% 2. Cursing 103 129 232 41.0% 50.0% 45.6% Total 251 258 509 100% 100% 100.0% x2 4.12,p<.05 B. Screaming 1. Never scream 227 229 456 90.4% 88.4% 89.4% 2. Screaming 24 30 54 9.6% 11.6% 10.6% Total 251 259 510 100% 100% 100.0% x2 .550, p = ] sr.s. People inflicted with memory impairing illnesses often have moments when they are aware that their mental processes are not functioning properly (Powell and Courtice, 1986: 130). That recognition may cause the dementia patient to feel embarrassed, frustrated, and/or angry (Powell and Courtice, 1981: 130-131). Due to their realization of their mental condition some dementia patients may resort to verbal aggression as a means of expressing their frustration. 76 Table 27 reveals that there is an even distribution in cursing (50%) and not cursing (50%) among special care unit residents. Forty-one percent of residents residing in integrated care unit swear. As indicated in Table 27 most residents who live in an integrated care unit do not curse (59%). Table 27 shows that 89% of institutionalized dementia patients never screamed. Among these subjects 90% reside in an integrated unit and 88% live in a special care unit. I was surprised to observe that so few residents in special care units (11%) participated in screaming. Based on the assumption that memory deterioration is a frustrating experience, I assumed that more residents would express themselves through screaming. Table 28. Percentage Breakdown of Resident Population with Dementia by Wandering and Facility Type in British Columbia's Long-term Care Facilities Facility Type Integrated Care Unit Special Care Unit Wandering Total 1. Never wanders 120 53 173 47.8% 20.5% 33.9% 2. Wandering 131 206 337 52.2% 79.5% 66.1% Total 251 259 510 100% 100% 100.0% *2 42.52, p<.001 Wandering or "exit seeking" is commonly associated with Alzheimer's disease (Jones, 1996: 429). Table 28 indicates that 66% of subjects involved in The Intermediate Care Facility Project wandered. In contrast, approximately 80% of residents residing in special care units wandered. Given that special care units were designed specifically to care for people with cognitive decline, the high percentage of wanderers residing within this unit is not surprising. 77 Most special care units have a controlled exit (such as a punch key) to prevent residents from eloping from the premises. Table 29. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding and Facility Type in British Columbia's Long-term Care Facilities Facility Type Integrated Care Unit Special Care Unit Hiding/Hoarding Total 1. Never hides/ hoards 204 196 400 81.3% 75.7% 78.4% 2. Hides/Hoards 47 63 110 18.7% 24.3% 21.6%) Totals 251 259 510 100% 100% 100.0% y.2 2.36, p=l sr.s. Table 29 reveals that 19% of residents in integrated care units do engage in hiding and hoarding. Whereas, 24% cognitively impaired residents residing in special care units do display the inappropriate behaviour of hiding and hoarding. The findings in Table 29 were not statistically significant. One of my hypotheses for my study on restraints practices was that resident who live in special care units would be more likely to exhibit problematic behaviours than those who reside in integrated care units. The findings from Tables 25 to 29 support my hypotheses. These tables show that residents who reside in special care units are more likely to engage in deviant behaviours (i.e., physical aggression, general restlessness, verbal aggression, wandering, and hiding/hoarding) than those residents who live in integrated care facilities. 78 Table 30.Percentage Breakdown of Resident Population with Dementia by Physical Aggression and use of Physical Restraint in British Columbia's Long-term Care Facilities Physical Restraints No Yes Physical aggression Total 1. No aggressive behaviour 282 84 366 72.7% 68.9% 71.8% 2. Yes aggressive behaviour 106 38 144 27.3% 31.1% 28.2% Total 388 122 510 100% 100% 100% x2 4.43, p = N.S. The next several tables explore the use of physical restraints. A physical restraint is any manual, physical or mechanical device that restricts the movement of an individual. The Intermediate Care Facility Project's questionnaire on Resident Restraints included the following types of physical restraints; chest, chair/tray, hard waist, soft waist, bed rail/full and bed rail/part. In order to ensure that there were enough subjects in each cell I collapsed the six types of restraints into one category, "physical restraints." Table 30 demonstrates that 76% of residents do not experience physical restraints compared to the 24% of residents who do encounter the use of physical restraints. One might assume that residents who display physically aggressive behaviours would be more likely to experience the use of physical restraints. The findings in Table 30 support this proposition, however, the difference between those who exhibit aggressive behaviours (31%) and those who do not (27%) is smaller and statistically insignificant than I expected. 79 Table 31. Percentage Breakdown of Resident Population with Dementia by General Restlessness and use of Physical Restraints in British Columbia's Long-term Care Facilities Physica Restraints No Yes General restlessness Total 1. Never restlessness 220 56.7% 61 50.0% 281 55.1% 2. Yes is restless 168 43.3% 61 50.0% 229 44.9% Total 388 100% 122 100% 510 100% I2 1.68, p = N.S. Forty- three percent of cognitively impaired residents who showed signs of general restlessness did not experience physical restraints; whereas 50% of the cognitively impaired subjects who displayed repetitious mannerisms were physically restrained. An interesting comparison is that residents who were physically aggressive (Table 30) were less likely to experience physical restraints (31%) than were those residents who were restless, which consisted of behaviours like tapping, rocking and so on (50%). 80 Table 32. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and use of Physical Restraints in British Columbia's Long-term Care Facilities Physical Restraints No Yes A. Cursing Total 1. No cursing 214 55.3% 63 51.6% 277 54.4% 2. Yes cursing 173 44.7% 59 48.4% 232 45.6% Total 387 100% 122 100% 509 100% x2 .500, p= N.S. B. Screaming 1. No screaming 356 91.8% 100 82.0% 456 89.4% 2. Yes does scream 32 8.2% 22 18.0% 54 10.6% Total 388 100% 122 100% 510 100.0% y.2 9.39, p<.0 Table 32 displays verbal aggression (i.e., cursing and screaming by the use of physical restraints). I was surprised to observe that 48% of residents who swear were physically restrained. A possible explanation for why residents who swear are physically restrained is that when the nursing staff was interviewed they were encouraged to select all of the categories that applied to the resident. Therefore, someone who cursed could also be known to wander and or be physically aggressive. The physical restraint may have been applied to control for wandering rather than for curing. Table 32 also reveals that 89% of memory impaired residents never scream. However, for those residents who do scream 18% were physically restrained. Screaming is positively and significantly associated with the probability that a resident will experience physical restraints. 81 Table 33. Percentage Breakdown of Resident Population with Dementia by Pace/ Wandering and use of Physical Restraints in British Columbia's Long-term Care Facilities Physical Restraints No Yes Pace/Wandering Total 1. Never wanders 126 47 173 32.5% 38.5% 33.9% 2. Does wander 262 75 337 67.5% 61.5% 66.1% Total 388 122 510 100% 100% 100.0% Y 2 1.52, p = N.S. Cognitive impairments like Alzheimer's disease restricts a persons' ability for judgement or reasoning. Due, to the illness residents with dementia do not understand why they are in a nursing home and usually try to leave this strange place in an attempt to find their home or family members. In the health care profession this type of behaviour is usually referred to as "wandering," "elopers" or "exit seekers" (Jones, 1996: 429). The column total in Table 33 shows that 66% of residents involved in The Intermediate Care Facility Project wander. Sixty-two percent of those residents who wander were physically restrained. Nursing homes are often afraid that a "wanderer" will elope from the building therefore restraints are used for the residents safety. 82 Table 34. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding Things and use of Physical Restraints in British Columbia's Long-term Care Facilities Physical Restraints No Yes Hiding/ hoarding things Total 1. Never hiding/hoarding 297 103 400 76.5% 84.4% 78.4% 2. Yes does hide and hoard 91 19 110 23.5% 15.6% 21.6% Total 388 122 510 100% 100% 100.0% x2 3.41, p = N.S. Some dementia residents will collect items from other resident's rooms and or common areas (dining room, lounge). Objects that they might hoard include picture frames, money, hand towels, utensils, and so on. In an attempt to control this deviant behaviour some long term care facilities use physical restraints. Table 34 indicates that 78% of residents involved in the study never hoarded nor hid objects. Sixteen percent of residents that collected objects or hide them were physically restrained; whereas, 24% of residents who hoarded of hide items were not physically restrained. Table 35. Percentage Breakdown of Resident Population with Dementia by Physical Restraints use and Screaming in British Columbia's Long-term Care Facilities Inappropriate Behaviour No Yes Physical restraints Total 1. No restraints 356 32 388 78.1% 59.35 76.1% 2. Yes restrained 100 22 122 21.9% 40.7% 23.9% Total 456 54 510 100% 100% 100.0% x 2 9.39, p<.01 83 When analyzing inappropriate behaviours and the use of physical restraints, it is important to recognize that some of the residents may have been acting out as a result of physical restraints. For instance, a resident who is immobilized due to restraints may be verbally aggressive in an attempt to draw attention from the nursing staff or they may be agitated because they do not understand why they are unable to move. Cursing, general restlessness, and screaming are the factors that I thought would be associated with physical restraint use. However, the only variable which was significant in relation to restraint use was screaming. Approximately 41% of residents scream due to experiencing physical restraints. As mentioned above a resident who is restrained by bed rails could be screaming to draw attention form the nursing staff for some of their care needs, such as toileting. Table 36. Percentage Breakdown of Resident Population with Dementia by Physical aggression and use of P.R.N. medication in British Columbia's Long-term Care Facilities Chemical Restraints No Yes Physical aggression Total 1. Never 113 243 356 75.3% 70.4% 71.9% 2. Yes physically aggressive 37 102 139 24.6% 29.6% 28.1% Total 150 345 495 100% 100% 100.0% I2 2.28, p= N.S. Pharmacological restraints are medications which are distributed to manage behavioural difficulties (i.e., aggressive behaviour, verbal agitation, etc.) and or to control moods. Some of the common chemical restraints used in long term care facilities to manage dementia residents include sedatives, tranquilizers, and psychoactive drugs (anti-depressants). To measure the use 84 of chemical restraints among cognitively impaired residents, I examined the P.R.N. medications from the Intermediate Care Facilities Chart/Medical Record Instrument. P.R.N. is a Latin term (Pro Re Na 'Ta) which means according to circumstance. P.R.N. medications are given on a "as needed basis" as a result patients do not receive this medication regularly. It is administered only when the resident is physically, verbally aggressive (agitated) and/or depressed. Table 36 shows that 70% of subjects involved in The Intermediate Care Facility Project were administered a P.R.N. medication. One common symptom of dementia patients is heightened emotions. Gerontologists speculate that emotional instability, such as aggressive behaviours are due to the patients inability to express themselves and or the realization that they are different from before (Powell and Courtice, 1981: 130). Table 36 reveals that most of the residents involved in The Intermediate Care Facility Project did not behave in a physically aggressive behaviours (72%). Thirty percent of the cognitively impaired residents who displayed aggressive behaviours were adniinistered a chemical restraint. While 25% of resident who were physically aggressive did not receive any pharmacological restraints. The findings in Table 36 reveal that aggressive behaviours do not have a significant impact upon the use of chemical restraints. Table 37. Percentage Breakdown of Resident Population with Dementia by General Restlessness and use of P.R.N. Medication in British Columbia's Long-term Care Faculties Chemical Restraints No Yes General restlessness Total 1. Never 89 183 272 59.3% 53.0% 54.9% 2. Is restless 61 162 223 40.7% 47.0% 45.1% Total 150 345 495 100% 100% 100.0% y.2 1.67, p = N.S. 85 Another behavioural characteristic of cognitively impaired residents is restlessness. Powell and Courtice stated that this type of behaviour is probably a result of organic changes (1981: 143). Table 37 demonstrates that approximately 45% of residents exhibited restless behaviour. An interesting finding was that 53% of resident who never engaged in physical aggression received chemical restraints. In contrast, 47% of cognitively impaired residents who were physically aggressive were chemically restrained. Table 38. Percentage Breakdown of Resident Population with Dementia by Verbal Aggression and the use of P.R.N. Medications in British Columbia's Long-term Care Facilities Chemica Restraints No Yes A. Cursing Total 1. No cursing 89 179 268 59.7% 51.9% 54.3% 2. Yes cursing 60 166 226 40.3% 48.1% 45.7% Total 149 345 494 100% 100% 100% y 2 2.58, p= N.S. B. Screaming 1. No screaming 137 305 442 91.3% 88.4% 89.3% 2. Yes does scream 13 40 53 8.7% 11.6% 10.7% Total 150 345 495 100% 100% 100% r 2 .937, p = N.S. Because of the cognitive impairments that people with dementia experience, it is often difficult for them to screen out background noises. A resident who curses loudly or screams can be disturbing background noise and may cause the other residents to feel angry or afraid. To elevate some of the strain that a verbally aggressive resident can place on a care unit some 86 nursing homes will use chemical restraints. Based on this knowledge, I assumed that residents who screamed would receive more chemical restraints than those residents who did not scream. Yet, the finding in Table 38 reveal that residents who never scream (88%) were more likely to be chemically restrained than those residents who did scream (12%). Table 39. Percentage Breakdown of resident Population with Dementia by Pace/Aimless Wandering and use of P.R.N. Medication in British Columbia's Long-term Care Facilities Chemical Restraints No Yes Wandering Total 1. Never wanders 58 110 168 38.7% 31.9% 33.9% 2. Yes does wander 92 235 327 61.3% 68.1% 66.1% Total 150 345 495 100% 100% 100.0% y.2 2.15, p = N.S. Wandering is another behaviour which is often exhibited by people with cognitive impairment. In order to protect themselves against litigation as a result of a resident falling or eloping some long term care facilities will use chemical restraints. Table 39 shows that approximately 66% of nursing home residents wandered. Of those residents who wandered 68% received chemical restraints. Chemical restraints were administered more frequently than physical restraints (62%) in an attempt to prevent residents from wandering. 87 Table 40. Percentage Breakdown of Resident Population with Dementia by Hiding/Hoarding Things and use of P.R.N. Medication in British Columbia's Long-term Care Facilites Chemical Vfedication No Yes Hiding and hoarding things Total 1. Never 125 83.3% 265 76.8% 390 78.8% 2. Yes does hide and hoard 25 16.7% 80 23.2% 105 21.2% Total 150 100% 345 100% 495 100.0% x2 2.66, p = N.S. Table 40 shows that 79% of the subjects never hide or hoarded things. Twenty three I percent of residents who hide or hoarded objects were receiving chemical restraints. Residents who hide and hoard items were more likely to receive chemical restraints (23%) than physical restraints (16%). The relationship between hiding and hoarding and the use of chemical restraints was not significant. Table 41. Percentage Breakdown of Resident Population with Dementia by Facility Type and use of Physical Restraints in British Columbia's Long-term Care Facilities Physica Restraints No Yes Facility type Total 1. Integrated care unit 198 53 251 51% 43.4% 49.2% 2. Special care unit 190 69 259 49% 56.6% 50.8% Total 388 122 510 100% 100% 100.0% x2 2.14, p = N.S. 88 One of my hypotheses was that cognitively impaired residents residing in special care units would be less likely to encounter physical and chemical restraints than cognitively impaired residents living within an integrated care facility. My hypothesis was based on the assumption that special care units were designed to meet the special needs of residents with dementia, and therefore, care staff would be more accepting of inappropriate behaviours. However, the findings in Table 41 demonstrate that special care units were more likely to use physical restraints (57%) than were integrated care facilities (43%). Table 41 also shows that the type of unit (i.e., special care unit or integrated care unit) does not have a significant effect upon the use of physical restraints. Table 42. Percentage Breakdown of Resident Population with Dementia by Facility Type and use of P.R.N. Medication in British Columbia's Long-term Care Facilities Chemical Restraints No Yes Facility type Total 1. Integrated care unit 81 162 243 54% 47% 49.1% 2. Special care unit 69 183 252 46% 53% 50.9% Total 150 345 495 100% 100% 100.0% y.2 2.08, p = N.S. Chemical restraints are far easier to disguise as a strategy for controlling inappropriate behaviours than are physical restraints. Geri-chairs, lap belts and bed rails are some of the mechanical devices use to manage deviant behaviours. Unlike chemical restraints which are not visually apparent to family members physical restraints are much more noticeable. 89 Since, special care units were designed specifically for residents with memory impairment I assumed that they would be less likely to adrninister chemical restraints. The findings in Table 42 indicate that 47% of residents in an integrated care unit were restrained whereas 53% of residents in a special care unit were chemically restrained. Table 42 reveals that type of care facility does not have a positive or significant relationship with chemical restraint use. Reasons that could explain why special care units were found to use more physical and chemical restraints than integrated care facilities will be explored in Chapter 5 (Discussion and Conclusion). 5.3 Section 3: Multivariate Statistics The benefit of employing logistic regression is that it enables one to evaluate the relative contributions of variables, such as type of care unit, to the use of physical restraints (Kay and Hagan, 1995: 442). This type of regression analysis is usually used in predicting whether an event or behaviour is likely to occur or not. Logistic regression is a multivariate method that determines which variables will influence the probability of an event occurring or not, independently of other variables in the analyses (Kay and Hagan, 1995: 142). The findings for the logistic regression model on physical restraint use in long-term care facilities are presented in four equations in Table 43. The first equation explores the demographic characteristics of dementia residents involved in The Intermediate Care Facility Project. These demographic characteristics include education, marital status, age, gender, and household income. The second equation reveals results that introduce a resident's level of memory impairment to the logistics regression model. A resident's level of memory impairment 90 was classified as either moderate or severe; this was based on the nursing staffs description of the subject. The third equation in Table 43 includes a variety of inappropriate behaviours such as, aggressive behaviours (which include physical and verbal aggression), wandering and hoarding, general restlessness and screaming. The fourth equation examines the effect that the type of unit (i.e., special care unit or integrated care unit) has on whether a resident experiences physical restraints. The findings from equation 1 reveal that the demographic characteristics, namely education, marital status, age, gender, and household income do not have significant effects upon the use of physical restraints. Equation 2 demonstrates that level of memory impairment does have a positive and significant relationship with physical restraints (B= .644, p<.05, e=1.90). This finding suggest that the probability of physical restraint use increases by 90% when a resident has severe memory impairment. For the inappropriate behaviour variables in equation 3, the only one that was positively and significantly associated with physical restraint use was screaming (B =.995, p<.01, e=2.70). Screaming results in a 170% increase in a demented resident experiencing physical restraints. Recall that the bivariate analysis of these data (Table 27) revealed that screaming was the only behavioural variable to have a significant relationship to physical restraint use. As explained earlier this could be due to the extra strain that loud noises place on a care unit. Other residents become agitated due to their inability to filter out or understand background noises and therefore, may become more difficult for the nursing staff to manage. Type of care unit does not have a significant effect on physical restraint use in long term care facilities. It is interesting to note that once type of care unit is added to the logistic regression model, (equation 4) that junior high school becomes significant (B = .626, p<.05, 91 e=2.36). I assumed that the primary reason for why junior high school became significant was that this category contained the bulk of my sample population. When I referred to Table 11, however, I found that their was a relatively even distribution of residents between higher education (30%) and junior high school (32%). Another explanation could be that junior high school was close to being significant across all of the equations in the logistics regression model and once type of unit was added junior high school was found to have a positive and significant relationship with physical restraints. Why this might have occurred is that the effect of junior high school was suppressed by failure to include type of care unit. In Table 44 the logistic regression model predicting chemical restraint use in long-term care faculties did not reveal any significant predictor variables. The results of the logistic regression model predicting the type of care unit were residents are likely to reside are presented in 3 equation in Table 45. The first equation explores a variety of demographic variables including education, marital status, age, gender, and combined annual income. Age was the only demographic variable which was negatively and significantly associated with the type of care unit in which a resident will reside. Residents who were in the middle age group (B= -.979, p <.01, e= -.376) were 62% less likely to be placed in a special care unit. The findings from equation 1 demonstrate that the probability of residing in special care units decrease by 74% when residents are in the older age group (B= -1.341, p <,001, e = -.262). This finding was surprising, I assumed that as people with memory impairment age their chances of being placed in a special care unit would increase. However, the findings reveal that as dementia residents age they are more likely to reside in an integrated care facility than a special care unit. A more appropriate age related variable for determining the type of unit a resident would reside in is age of onset. People who are inflicted with memory impairment at 92 relatively young ages, such as Pre Senile Dementia (occurs before the age of 65) tend to progress through the disease more rapidly than someone who is diagnosed with dementia after the age of 65 (Perlmutter and Hall, 1992: 159). As these people advance to more severe stages of memory impairment their care levels increase. In order to meet the care needs of residents with severe levels of memory impairment long-term care facilities may transfer the resident to a special care unit. The second equation in Table 45 reports the effects that level of memory impairment has upon where a resident will reside in a long-term care setting. Severe memory impairment is positively and significantly associated with the probability that a resident will be placed in a special care unit (B= .983, p<.001, e= 2.67). There are many challenges facing health care providers in dealing with people suffering memory impairment. Because special care units were designed specifically to house dementia patients, it is not surprising to find that more residents with severe dementia are residing within them. The final equation introduces the effects of inappropriate behaviours including aggressive behaviours, wandering and hoarding, general restlessness, and screaming. Neither aggressive behaviours nor screaming have significant effect upon the type of unit in which residents are likely to reside. However, both wandering/hoarding (B= .697, p<.001, e =2.50) and general restlessness were significant predictors of where a demented resident lives. The findings indicate that residents who wander and hoard are 2.5 times more likely to live in a special care unit than resident who do not engage in these behaviours (wander and hoard). Equation 3 also reveals that residents who are restless are 100% more likely to reside in a special care unit. Recall that special care units were designed to meet the needs of people with dementia. These units tend to 93 have special features to assist in providing care for residents with dementia, one such feature is alarms to reduce elopement risk as a result of wandering. 5.4 Conclusion In this chapter I analyzed data provided by The Intermediate Care Facility Project. Several statistical methods were utilized to facilitate analyses of these data: (1.) univariate statistics, (2.) cross tabulations, and (3.) logistic regression techniques. The univariate analyses enabled me to provide a descriptive profile of the subjects involved in The Intermediate Care Facility Study. For example, the findings revealed that a large portion of the dementia residents in long-term care suffered from Alzheimer's disease (74%). Also, these facilities tended to house residents with moderate levels rather than severe levels of memory impairment. The second section which focuses on bivarate relationships between pairs of variables. One of the hypotheses for my study is that special care units will be more likely to house residents with severe dementia. The findings indicated that this assumption is accurate. Residents with severe dementia were more likely to live in special care units than to live in integrated care units. One of my hypotheses was not supported. Based on my experience working in the nursing home environment, I believed that special care units would be less likely to use physical and chemical restraints than would integrated care facilities. However, the findings revealed that special care units used more physical and chemical restraints than integrated care units. Explanations for why this hypotheses was not supported will be further explored in the next chapter, Chapter 6: Discussion and Conclusion. 94 The final section of this chapter, uses logistic regression to predict the probability of an event occurring. The regression models revealed that level of memory impairment was a significant predictor of physical restraint use as well as the type of care unit in which a patient would reside. The more severe the level of memory impairment the more likely a resident will be placed in a special care unit. Once located in these special care facilities, residents are more likely to experience physical and chemical restraints than their counterparts in integrated care units. The findings from the univariate, bivariate, and multivariate logistic regression analyses will be further examined in the next chapter. In addition, Chapter 6 will compare research from the links to literature chapter (Chapter 2) with the findings from my study. The purpose of this comparison is to explore possible reasons for why my findings either support or contradict these earlier research studies. 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H , 00 00 \.9 *o , ° ai kH OJ "O Pi kH a o \d 00 o H CN HH o GO CO s •O o o O CO x o O kH H ^ C O •o o o o co co && JJ ii co _co o o kH kH 00 00 c c o o co co 'S "S o o u u 98 C H A P T E R 6 - DISCUSSION AND CONCLUSION The purpose of this final chapter is to summarise the key findings of the study and policy implications. This chapter includes a brief description of the demographic shift in Canada and the consequences of this shift for long-term care facilities. This chapter provides further interpretation of the bivariate and multivariate analyses. In addition, I will provide a comparative discussion of my study's main findings in relation to the broader gerontological literature (see Chapter 2). The reason for this comparative discussion is to examine possible reasons for why my findings either support or contradict the gerontological literature. This chapter will also discuss some of the limitations of The Intermediate Care Facility Project and how these limitations may have impacted on the research findings. I will also explore some of the limitations within my own study and provide suggestions that may assist future research. In the final section, I address policy issues, including some of the problems within the Canadian health care system, such as the contradictions with facilities restraint policies. The chapter closes with recommendations on how long-term care facilities could improve the quality of life of their residents with memory impairment. 6.1 Research Objectives As a result of better nutrition and medical advances, the average age of Canadians has been increasing for years. The 1996-1997 census found that men are living to the age of 76 years and women are expected to live to the age of 81 years (Statistics Canada: 1996-1997). Life expectancy will continue to rise in the years to come as medical advances lead to even greater increases in longevity. Beaujot states that by the year 2036 Canadians on average will live to the age of 84 years(1991: 208). He also predicts that by the year 2036, approximately 25% of the 99 Canadian population will be 65 years of age and above (Beaujot 1991: 203). Concurrent with the large increase in elderly people, are the diseases that general strike during old age, such as dementia. By the year 2031, 24% of the Canadian population 65 and above will surfer from some form of dementia (National Advisory Council on Aging, 1996: 35). An alternative environment to home care is institutional care (i.e., nursing homes). Perlmutter and Hall found that nearly two thirds of nursing home residents were disoriented or had some form of memory impairment (1992: 454). Due to the demographic shift and the accompanying diseases associated with old age, nursing homes are now housing older, more demented residents than in the past. As the statistics demonstrate, this trend is going to continue and increase. It is within this context that I conducted my study on the quality of care that dementia residents receive in long-term care facilities. The purpose of my thesis was to evaluate the quality of care that dementia residents receive while residing in segregated and integrated care units. More specifically, the objective of this comparative study was to analyse whether restraint practices for residents with dementia differ between special care units and integrated units within long-term care facilities across British Columbia. In order to accomplish these objective, I undertook a program evaluation study. Colin Robson stated that "Evaluation is one type of applied research. Applied research in general is seen as being concerned with defining real world problems, or exploring alternative approaches, policies or programmes that might be implemented in order to seek solutions to such problems" (1993: 171). In applying Robson's definition of program evaluation to my study "the real world problem" is the lack of empirical data concerning the benefits or disadvantages of units designed specifically to house residents with memory impairment (i.e., special care units). 100 The review of literature chapter (Chapter 2) highlights the debate among health care professionals regarding whether persons with dementia would benefit more from being placed in either a special care unit or an integrated care unit. For those professionals who support integrated units, their main argument is that cognitively intact residents would help provide stimulation for their cognitively impaired neighbours. In contrast, professionals who favour segregated units believe that closed units would reduce stimulation that can have a negative effect on resident's with dementia (i.e., by reducing their level of agitation). While this debate has taken place there has been a tremendous growth of special care units in long term care facilities. Although special care units are becoming more prevalent, there has been little empirical data concerning the type of resident's housed in these units (behavioural problems, level of impairment) and how these units manage/care for their clientele suffering from dementia. Providing quality care for memory-impaired residents is a concern for long-term care facilities as well as for their family members. Special care units, in general have been accepted by most lay people as a means of obtaining a better quality of care for the demented. However, as I mentioned there have been few studies which evaluate special care units, and even fewer that compare special care units with integrated care units. In order to facilitate my comparative study, I developed two propositions: The first proposition is that there will be higher levels of memory impairment and more inappropriate behaviours displayed among residents in special care units when compared with demented residents of integrated units. It was also predicted that residents with severe dementia would be more likely to engage in inappropriate behaviours than residents with moderate levels of memory impairment. The second proposition is that there will be decreased use of physical and chemical 101 restraints among residents in special care units when compared with residents of integrated wards. These hypotheses explore the assumption that special care units were created specifically for residents with memory impairment. Therefore, care-providers should understand that memory impairment is a treatable rather than curable disease and that the inappropriate behaviours commonly associated with people inflicted with dementia are symptoms of the disease rather than the person. Based on this ideology and my thirteen years of working in long-term care settings, I believed that employees of special care units would be more tolerant of inappropriate behaviours, and thus, less likely to use physical and chemical restraints than integrated wards. However, the following section, which serves to locate my main research findings in the context of the broader gerontological literature, reveals that some of my initial assumptions were not supported. 6.2 A Comparative Analysis of Research Findings In order for subjects to be included ih The Intermediate Care Facility Study, they had to have moderate or severe dementia. Subjects who were defined as having mild dementia were excluded. The rational for the removal of subjects with mild dementia was to ensure that the sample population would be similar in both the special care units and integrated care units with respect to memory impairment. Information regarding a resident's level of memory impairment and type of unit they were residing was provided by either the director of care, head nurse, or social worker. 102 Because, my study is based on data generated from The Intermediate Care Facility Project, I am missing information on subjects with mild memory impairment. Although my study does not include residents with mild dementia, this does not interfere the validity of the research findings; rather it limits scope conditions. As outlined in the introductory chapter (Chapter 1) the Canadian government has reformed the health care system from one based on hospitals/ institutions to a system based on community care in an attempt to reduce expenses. A consequence of this health reform is that when people are admitted to long-term care facilities, they tend to be in more advanced stages of memory impairment. Therefore, the exclusion of people with mild memory impairment by The Intermediate Care Facility Project may have also been due to the low number of subjects. As mentioned throughout this research study, special care units were designed specifically to house people with memory impairments. These units tend to provide physical features which take into consideration the special needs of the demented, such as ample wandering space, controlled entrance/exit from the unit, and so on. A hypothesis of this study was that special care units would contain more residents with severe dementia than integrated care units. The findings of this study (see Table 19) support this hypothesis. This study revealed that 66% of residents with severe dementia resided in the special care units, whereas only 35% of those residents with severe dementia were located in the integrated care units. These findings were also supported in the multivariate analysis (see Chapter 5). Severe memory impairment was positively and significantly associated with the probability that a resident would be admitted to a special care unit. A study conducted by Neena Chappell (1996) on the characteristics of memory impaired residents in long-term care facilities across British Columbia produced similar findings. She 103 found that residents in special care units were more likely to suffer from higher levels of memory impairment than do demented residents in integrated wards. Her findings revealed that 11% of residents in special care units had moderate dementia. In contrast, 29% of integrated care facility residents had moderate dementia. The survey demonstrated that 56% of all special care units housed residents with severe to very severe memory impairment. Whereas, residents with severe to very severe dementia represented only 20% of the integrated care units population. Given the recent explosion of special care units in long-term care facilities across British Columbia, it is not surprising to find that more residents with severe dementia are residing within them. Behavioural problems are common among cognitively impaired people residing in long-term care facilities. Behaviours that are the most frequently sited in gerontological literature include: physical and verbal aggression, agitation and wandering (Fisher, Fink and Loomis, 1993). As persons inflicted with dementia progress to more advance stages of the disease inappropriate behaviours tend to become more pronounced. One of the objectives of this study was to examine whether residents with severe dementia would be more likely than residents with moderate levels of cognitive decline to engage in inappropriate behaviours. After reviewing the gerontological literature, I decided to include five of the more common types of inappropriate behaviours exhibited by people with memory impairment. The following are the behaviours I examined in my study; physical aggression (hitting, grabbing, and other aggressive acts), restlessness, verbal aggression (cursing and screaming) wandering, and hiding/hoarding. The tables revealed that with all five types of inappropriate behaviours residents with severe cognitive decline were more likely to engage in these disruptive behaviours than residents with moderate dementia. For example, the study revealed that 78% of 104 people inflicted with severe dementia wandered. In contrast, only 63% of residents with moderate dementia wandered. A study conducted by Teri, Larson and Reifler (1988) on the nature of behavioural disturbances among Alzheimer patients also found that the frequency of most problems increased with cognitive decline. In particular, they found that agitation and wandering were problems that increased significantly. However, a study by Swearer, Drachman, O'Donnell, and Mitchell (1988), which explored inappropriate behaviours that generally accompany Alzheimer's disease, discovered that only one disruptive behaviour was weakly associated with level of memory impairment - assaultiveness. Their study suggests that inappropriate behaviours displayed by residents was not a result of mental deterioration. They found, that demographic variables, such as age, were more strongly correlated with disruptive behaviours. Although, the study by Swearer and colleagues (1988) suggest a different explanation for the rise in disruptive (age rather than disease) their findings are an interesting contribution to research on behaviours and level of impairment. Concurrent with the large increase in the proportion of residents with severe dementia are the behavioural problems that care-providers encounter. One of the hypotheses in my study was that residents who live in special care units would display more disruptive behaviours than those who reside in integrated wards. This assumption was based on the knowledge that special care units tend to house people with higher levels of cognitive decline and that level of impairment is associated with the prevalence of behavioural problems. The findings of this study support my hypothesis. Chapter 5 showed that residents who reside in special care units were more likely to engage in deviant behaviours (i.e., physical aggression, general restlessness, verbal aggression, wandering, and hiding/hoarding) than 105 residents who live in integrated care facilities. Yet, the multivariate analysis found that neither physical aggression nor verbal aggression have a significant effect on predicting in what type of unit a resident will reside. However, other measures of behavioural problems were good indicators of residence assignment. For example, wandering/hoarding and general restlessness were significant predictors of where a person with memory impairment will live. Riter and Fries (1992) conducted a comparative study of nursing homes that contained both a special care unit and regular unit to determine which inappropriate behaviours caused residents to be placed in the special care unit over the regular unit. Similar to my study, the researchers found that residents who wandered were more likely to be admitted to a special care unit (Riter and Fries, 1992). They also discovered that physical and verbal aggression were strong predictors of placement in a special care unit. Again, similar to my study once they started controlling for other independent variables through multivariate statistical analysis physical and verbal aggression were no longer significant indicators of special care unit placement. The analysis by Riter and Fries (1992) demonstrated that a resident's "Activity of Daily Living" (A.D.L.) was a stronger predictor than inappropriate behaviours of where a resident would live. They found that special care unit residents were more high functioning in respect to their "Activity of Daily Living" than residents in regular units. Although, "Activity of Daily Living" would be an interesting variable to investigate in the future, Riter and Fries (1992) findings are not surprising. Once a dementia resident becomes totally dependent for personal care and are no longer mobile they are usually transferred from the special care unit and admitted to an extended care unit. Extended care units specialise in providing care for people alert or confused that have become "totally dependent on their Activities of Daily Living." Health professionals commonly refer to this as intermediate care at level 3 (I.C.3.). The reason that 106 special care units would be more inclined to remove I.C.3. residents than integrated care facilities is due to their lengthy wait list. Special care units are scarce, some dementia residents will wait months even years to get a bed within their top ranked facility. Because beds are so scarce once a resident becomes totally dependent for their "Activities of Daily Living" they are removed from the unit. Thus, enabling a mobile resident from the wait list to be placed in a special care unit. Managing problematic behaviours presented by dementia residents is a tremendous challenge for long-term care facilities. Often these facilities have limited resources in trying to cope with disruptive behaviours. A simple solution is the common practice of administering physical and chemical restraints. Tinetti, Lui, Marottoli, and Ginter found that 66% of long-term care residents experienced the use of physical restraints. The reasons sited for the use of restraints was concern of falling, disruptive behaviours, and prevention of wandering (1991). To protect themselves against litigation, due to a resident falling, many long-term care facilities will use restraints. Some long-term care facilities have created special care units in order to meet the care needs of residents with dementia. These units are generally self-contained (meaning they have their own eating area, nurses station, etc.). They also tend to have staff with specialised training in dementia care. Thus, the final hypothesis if my study was that cognitively impaired residents in special care units would be less likely to encounter physical and chemical restraints than cognitively impaired residents living within an integrated care facility. This assumption was based on the theory that special care units were designed to meet the care needs of the demented, therefore, care providers would have the knowledge and access to alternative approaches to manage problematic behaviours. 107 However, the findings in Chapter 5 reveal that special care units were more likely to use both physical and chemical restraints than integrated care units. This study indicated that 57% of residents in special care units were physically restrained compared to only 43% of residents residing in integrated wards. In addition, my study reveals that 53% of special care unit residents received chemical restraints; whereas 47% of integrated residents were administered chemical restraints. Unfortunately, due to the lack of research studies comparing special care units with integrated care facilities, it is difficult to determine whether my findings regarding restraint practices are consistent across Canada or the United States. Even though most studies do not perform a comparative analysis, they do indicate that restraint use is wide-spread in nursing homes and hospitals (Zimmer et al, 1984, Tinetti et al, 1991; Buck, 1988). The findings from my study revealed that only 24% of residents involved in The Intermediate Care Facility Project experienced physical restraints. In relation to other studies which focused on physical restraint practices in long-term care settings, the percentage of subjects who were physically restrained in my study was significantly lower. These findings are a contradiction to the pretest results of the first phase of The Intermediate Care Facility Project. In the first phase of the study 194 facilities across British Columbia were surveyed. The survey was usually completed by the director of nursing or the director of care. The purpose of the survey was to provide current information on the type of care available to demented residents. Information generated from the survey was than used to assist in the development of instruments for the second phase of The Intermediate Care Facility Project. Results from the survey indicated that 92% of long-term care facilities operate with a non or rninimal restraint policy. However, the findings from the survey revealed that a 108 significant percentage of facilities used restraints to manage difficult behaviours. Since, most of the facilities that participated in the first phase of the study also agreed to be involved in the second phase of the project, I anticipated that the percentage of residents experiencing physical restraints would be in accordance with the pretest results. However, as mentioned my findings were significantly lower than the pretest results. 6.3 Limitations The low cell count for subjects who were physically restrained could be a result of how the questionnaire was administered in this study. Information on whether a particular resident was restrained or not was provided by either a registered nurse or nurses aid. Before the interview commenced, the care provider was asked about the restraint policy of the facility. Most care-givers reported that their facility implemented a non-restraint, minimal restraint or doctor's order policy. By asking the facility policy first, some respondents may have answered the restraint questions in accordance to the policy of the facility. A more suitable approach would have been to address the facility policy issue following the administration of the questionnaire. By this time, greater comfort and trust would have been established and perhaps gaps between policy and practice revealed. Care providers were aware that The Intermediate Care Facility Project was sponsored by the Federal Government (Department of Health Canada) so they may have felt that their performance as a nurse's aid/nurse was being evaluated. Care-givers are aware of the ethical issues associated with restraint use and generally try to underplay the frequency in which they are used. Besides the restraint instrument their were two other questionnaires that were administered to the care givers, generally these interviews lasted 20 minutes. Due to the 109 demands of their job most subjects did not have adequate time to properly address the questionnaires. Problems were not limited to The Intermediate Care Facility Project, how I chose to collapse cells from the Medical Chart Instrument may have impacted my findings on chemical restraints negatively. A limitation in my study was how I chose to measure chemical restraints. Since, I do not have a medical background I thought that the most effective way of measuring chemical restraints was to concentrate on only P.R.N, medications. Unlike standard order medications, which are administered on a regular basis P.R.N. medications are given on a "as needed basis." Generally, a patient would receive their prescribed P.R.N. medication if their behaviour was problematic (i.e., highly agitated). However, some P.R.N.'s are prescribed for when a patient has an infection (for example, penicillin). Therefore, not all P.R.N.'s are used treating problematic behaviours; some are given for temporary relief of a cold. I spoke with a director of care and she reassured me that a significant portion of P.R.N. medications in nursing homes were used as a chemical restraint. In hindsight I should have consulted a clinical nurse to assist me with the interpretation of the medical data rather than grouping all the P.R.N.'s together. This could explain why such a high portion of subjects (70%) in my study received chemical restraints. Another explanation for why the percentage of subjects who received chemical restraints was so high may be due to how these data were collected by The Intermediate Care Facility Project. Instead of approaching the care staff regarding a resident's medication, this information was obtained from the medical charts by the research assistant. By not relying on the care-givers to provide information on chemical restraints these data may have created a more accurate picture of restraint practices in long-term care facilities. In other words, the high percent of residents that were administered P.R.N. medications demonstrates the excessive use of 110 medications in long-term care facilities. Remember that standing order medications were excluded from my study on chemical restraints if they were included the percent of residents receiving medications would have been even higher. Due to the prevalence of P.R.N. medications the relationship between dementia and chemical restraints may have been masked. Therefore, explaining why there were no significant relationships between chemical restraints and type of unit, level of dementia etc in my logistic regression model on chemical restraints. The following section will explore some of the findings in relation to the arguments created in Chapter 3 on Program Evaluations. 6.4 Program Evaluations In my Chapter on Program Evaluations I provided several explanations for why special care units would use more physical and chemical restraints than integrated wards. I believe that the primary reason for why my main hypothesis was not supported is due to the traditional care practices that special care unit are operating within. Recall that a traditional care system means that the nurses and nurses aids are given a set amount of time to complete their daily task Coon, 1991: 62). Care in a traditional system is delivered in an assembly line fashion. This system ignores the special needs of residents with memory impairment. Residents with dementia require a care system which emphasis a therapeutic care experience; that is a care system which is based on quality of care not quantity of care. A therapeutic care system would provide care-givers with more flexibility as to the times by which certain task should be completed. In addition, this type of care would also recognise the individual needs of a resident with dementia. For example, if a resident wishes to sleep in and have their breakfast at 9:00 a.m. rather than the set time of 7:00 a.m. they should have the 111 option. Rather than measuring the success of a care-giver by how much work they have completed in a set amount of time, directors of care should evaluate the performance of care-givers by how relaxed and cheerful their residents are (Coon, 1991: 62-63). A fundamental reason for why traditional care systems continue to be practised within special care units is that it enables owners to reduce their largest expense - staff. In a traditional care system owners can operate with a much larger staff to resident ratio. In theory special care units should operate on a one care-provider to five resident ratio; however, in practice the ratio is often much higher. When providing government officials and family members with information on staff-patient ratio some facilities will include any employees who have contact with the residents, such as activity directors, kitchen staff, and maintenance, etc. Facilities should be basing their staff-patient ratios only on those staff members who provide direct hands on care (i.e., care aides and nurses). In order for dementia residents to receive good therapeutic care, care aids need to be responsible for fewer patients. In a survey conducted by Coons (1991), she found that special care units that operate close to one staff person per five residents consistently reported patient gains (i.e., lower levels of agitation). For faculties who choose to operate on a higher staff-patient ratio the consequence for the demented resident is that the overworked, task oriented care-giver uses restraints in order to manage their workload. 6.5 Contributions and Ideas for Future Research In order to accommodate the increasing number of residents with cognitive decline, some long-term care facilities are creating special care units. These units are often developed through the renovations of existing facilities. The funding for these renovations are often provided in the 112 form of grants from the Canadian government. Although, these unit are becoming more prevalent and accepted as a better form of care for the demented than regular units, there has not been rigorous evaluations on the impact of these units on restraint practices. It is just assumed by lay-people and some health professionals that because special care units were designed specifically for people with memory impairment they would be less likely to use restraints. Therefore, the contribution that my study adds to gerontological research is that it demonstrates that special care units are more likely to administer restraints than are units not specifically designed to house people with memory impairment. In other words, my comparative study reveals that there is an increase use of physical and chemical restraints among residents in special care units when compared with residents of integrated wards. From my involvement with The Intermediate Care Facility Project I noticed that special care units vary considerable. I spoke with the director of Community Care Licensing at the Vancouver Health Board (Brigitte Baumenn) regarding a definition for what constitutes a special care unit in British Columbia. She informed me that all long-term care facilities are licensed under the Community Care Facility Act, and that under this act special care units are required to fulfil two things. First, special care units must be totally self-contained, meaning they must have their own dining room, activity room, bathing room etc.. Under the act special care units are not required to have their own separate kitchen. The second regulation that special care units are expected by law to follow is that the unit must have a controlled entrance and exit from the building/unit. The Community Care Facility Act specifies that a person residing in a special care unit is not allowed to leave the unit unless supervised by staff or a family member. Although, the Community Care Facility Act does not require adequate indoor wandering space 113 or an enclosed outside area adjacent to the unit, ministry officials are now recommending that special care units provide these architectural changes for their clientele. During our interview, Brigitte Baumenn specified that there are two types of special care units in British Columbia. The most common type of special care unit is referred to as a "retro fit". A "retro fit" refers to renovations which are done in an existing nursing home to try and accommodate their growing population of memory impaired residents. She mentioned that this type of special care unit is common in Vancouver due to the cost of land. However, trying to develop a special care unit in a high rise complex presents a challenge for all that are involved. The second type of special care unit is often referred to as a "purpose built" structure. These are new buildings constructed specifically for residents with memory impairment. As a result of working on The Intermediate Care Facility Project I was exposed to a large volume of special care units. From my experience I noticed that special care units which are "purpose built" generally are on one level, they tend to have an adequate sized outdoor area, and they provide their residents with a wandering loop. A wandering loop is a walking circuit that has no start or finish. In addition "purpose built" facilities provide therapeutic programs to assist their clientele both mentally and physically. Whereas, special care units that are "retro built" tend to be located in high rise buildings. These special care units meet the standards set by the Community Care Facility Act because they are self-contained and do have controlled entrance/exit from the unit. However, since a walking circuit and outdoor area is not mandatory under the Community Care Facility Act many "retro fit" special care units do not provide these architectural designs for their residents. As my work experience and interview with Brigitte Baumenn illustrate, special care units in British Columbia are extremely diverse. I encourage future evaluators of special care units to 114 develop a categorization system. For instance, they could categorize special care units according to their architectural designs and therapeutic approaches to care. A special care unit that offers only custodial care for the residents and has made limited changes to the physical environment, could be referred to as category one. In contrast, special care units that provide their residents with a therapeutic care program and whose physical environment is beyond those required by The Community Care Facility Act could be referred to as category two. Rather than performing a comparative evaluation of special care units with integrated care units future researchers should compare category 1 special care units with category two. Another suggestion for future researchers would be to compare a special care units restraint policy with the restraint practices that are actually occurring. Long-term care facilities under section 9 of the Adult Care Regulations Act are required by law to have written policies to guide staff in all matters pertaining to the care of residents. Included in these policies are a facilities approach to physical and chemical restraint. My involvement with The Intermediate Care Facility Project enabled me to uncover some contradictions with facilities restraint policies and what was actually being practised. Thus, in the future it would be interesting to evaluate the level of consistency between policy mandates with the implementation of care practises. In summary, special care units have been embraced by the Canadian Health Care System as providing a better quality of care for people with dementia than regular units. Yet, the findings from my study revealed that special care units were more likely to admmister physical and chemical restraints when compared to integrated care units. Rather than encouraging long-term care faculties (through the prospects of grant money) to create special care units, Health Canada should be rigorously evaluating the care practises, environmental designs, and restraint policies in their existing special care units. Only when the Canadian government takes an active 115 approach in regulating these facilities will the standards of care improve for those residents with memory impairment. 116 BIBLIOGRAPHY Babbie, Earl. 1992. The Practice of Social Research. Sixth Edition. California: Wadsworth PubUshing Company. Barusch, Amanda S. 1991. Elder Care: Family Training and Support. California: Sage Publications. 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The Gerontologist 13:315-317. Harper, Mary. 1991. Management and Care of the Elderly: Psychosocial Perspectives. London: Sage Publications, Inc. Health and Welfare Canada. 1991. Designing Facilities for People with Dementia. Ottawa, Canada: Health and Welfare Canada. Herskovits, Elizabeth J. and Linda S. Mitteness. 1994. "Transgressions and Sickness in Old Age." Journal of Aging Studies 8 (3): 327-340. Herzog, Elizabeth. 1959. Some Guidelines for Evaluative Research: assessing psycho-Social change in individuals. United States: Department of Health, Education and Welfare. Heston, Leonard and June A. White. 1983. Dementia: A Practical Guide to Alzheimer's Disease and Related Illnesses. New York: W.H. Freeman and Company. A Report of the Royal College of Physicians and the British Geriatrics Society. 1992. High Quality Long term Care for Elderly People, Great Britain: Cradley Print. Jones, M. 1991. The GentleCare System of Dementia Care. Burnaby, B.C.: Moyra Jones Resources. John, A.F., Korten, A.E., and Henderson A.S. 1987. "The Prevalence of Dementia: A Quantitative Integration of the Literature." Acta Psychiatrica Scandinavia 76: 465-479. Kallstrom, Liza., and Stump, Greg. 1981. Extended Care Study: An Analysis of Bed Requirements in the Greater Vancouver Regional Hospital District. Vancouver. Report. Katzman, R. 1986. "Alzheimer's Disease." New England Journal of Medicine 314(15): 964-973. Kay, Fiona M., and Hagan, John. 1995. "Changing Opportunities for Partnership for Men and Women Lawyers During the Transformation of the Modern Law Firm." Osgood Hall Law Journal 32 (3): 413-456. Lawton, M. P. 1980. "Psychological and environmental approaches to the care of Senile dementia patients." Psychopathology in the aged, 28: 265-278. 119 Lofgren, Richard., MacPherson, David., Granieri, Rosanne., Myllenbeck, Sharon., and Sprafka, Michael. 1989. "Mechanical Restraints on the Medical Wards: Are Protective Devices Safe?" 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Washington, D.C: United States Department Of Health, Education and Welfare. Netten, Ann. 1993. A Positive Environment? Physical and Social Influences on People with Senile Dementia in Residential Care. Great Britian: Ashgate Publishing Ltd. Ohta, R. J., and Ohta, B.M. 1988. "Special Units for Alzheimer's Disease Patients: A Critical Look." The Gerontologist 28: 803-808. Perlmutter, Marion and Hall, Elizabeth. 1992. Adult Development and Aging. New York: John Wiley and Sons, Inc. Powell, Lenore and Courtice, Katie. 1981. Alzheimer's Disease: A Guide for Families. Toronto: Macfarlane Walter and Ross. Rabins, P. V. 1986. "Establishing Alzheimer's disease units in nursing homes: pros and cons." Hospital Community Psychiatry 37: 120-121. Ray, Wayne., Federspiel, Charles., and Schaffiier, William. 1980. "A Study of Antipsychotic Drug Use in Nursing Homes: Epidemiologic Evidence Suggesting Misuse." American Journal Public Health 70: 485-491. Reid, Colin. 1996. Special Care Units For Seniors Suffering From Dementia- An Evaluation. Victoria. Centre on Aging. Unpublished. 120 Reid, Colin., and Marshment, Tracey. 1996. Interview and Investigation Guide: ICF Project. Victoria. Centre on Aging. Unpublished. Riter, Robert., and Fries, Brant. 1992. "Predictors of the Placement of Cognitively Impaired Residents on Special Care Units." The Gerontologist 32 (2): 184-190. Robbins, Laurence., Boyko, Edward., Lane, Judy., Cooper, Darcy., and Jahnigen, Dennis "Binding the Elderly: A Prospective Study of the Use of Mechanical Restraints in an Acute Care Hospital." Journal of American Geriatrics 35: 290-296. Robson, Colin. 1993. Real World Research: A Resource for Social Scientist and Practitioner Researchers. Oxford: Blackwell Publishers. Rossi, Peter., and Freeman, Howard. 1989. Evaluation A Systematic Approach. United States: Sage Publicaton. Sloane, P.D. 1990. Specialized Dementia Unit Nursing Homes: A Study of Settings In Five States. Report. 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"Job Turnover and Job Satisfaction among Nursing Home Aides." The Gerontologist 25(5): 503-509. Werner, Perla., Cohen-Mansfield, Jiska., Braun, Judith., and Marx, Marcia. 1989. "Physical Restraints and Agitation in Nursing Home Residents." Journal of American Geriatric Society." 37: 1122-1126. 121 Weiss, Carol H. 1998. Evaluation: Methods For Studying Programs and Policies. Second Edition. New Jersey: Prentice-Hall, Inc. Williams, Carter C. 1989. "The Experience of Long Term Care in the Future." Journal of Gerontological Social Work 14 (1/2): 3-18. Vido, Eva., and Reid, Colin. 1996. Guide For Interviewers: Intermediate Care Facility Project. Victoria. Centre on Aging. Unpublished. Vogt, Paul. 1993. Dictionary of Statistics and Methodology: A Nontechnical Guide for the Social Sciences. United States: Sage Publications. Phone interview with the Director of Community Care Licensing at the Vancouver Health Board- Brigitte Baumen- June 22nd 2000. 122 A P P E N D I X A 123 Evaluation of Care for Persons Suffering from Dementia CENTRE ON AGING UNIVERSITY OF VICTORIA INTRODUCTION The University of Victoria, Centre on Aging is conducting a study of various aspects of institutional care for residents suffering from dementia (including Alzheimer's disease). This includes information, for example, on the types and number of staff, the types of activities the residents take part in, and the physical surroundings the residents live in. Information on the type of care needed by persons suffering from dementia, living in intermediate care facilities, is essential for policy makers in both the private and the public sectors to make plans for assuring adequate resources to treat persons suffering from dementia. Although we cannot guarantee any direct benefit to you or your impaired relative for participating in the study, you will have contributed to something that may improve the lives of future persons with dementia and their caregivers. We therefore are requesting your assistance on this research project. We need to collect information on the health and functioning of your impaired relative by speaking to the staff at the facility where your relative is a resident, assessing the resident directly by speaking to her/him, reviewing her/his medical records and charts, evaluating the physical environment in which care is provided, and speaking to you. The interviews will take about 2 hours to complete: 30 minutes will be spent with your impaired relative, 15 minutes will be spent with you, and 1 Vz hours will be spent obtaining information from residential care facility staff and records. WHAT YOU ARE ASKED TO DO IF YOU PARTICIPATE IN THE STUDY: In order not to overly burden you or your impaired relative, we will collect much of the information directly from the Intermediate Care Facility administrators or staff, physicians and from any other providers from whom your impaired relative may have received medical, long term care, or social services. All you will need to do is the following: If your relative with dementia is unable to do so for him/herself, sign the consent form for your impaired relative and an "Authorization for Release of Medical Records and Access to Medical Records and Bills". The consent form indicates that you, on behalf of your relative with dementia, agree to participate in the study. The medical records form authorizes us to get medical and health care use information from medical and social services providers that provide services directly to your impaired relative. 125 Evaluation of Care for Persons Suffering from Dementia I understand that a research team from the University of Victoria is conducting a study to identify the aspects of care most likely to enhance the well-being of persons suffering from dementia, living in institutions. I understand that I have been asked to consent, on behalf of my impaired relative, to participate in this study. The interview with me should take 10-15 minutes and with my impaired relative 30 - 45 minutes. I understand that the data will be collected two times; now, and in approximately 1 year's time. I understand that information will be collected by asking questions, recording it from charts and observations. No invasive tests (such as taking blood) will be performed. All information will be kept confidential. No results will be released in a way that could identify me personally or my impaired relative, and I have the right to withdraw from the study at any time without jeopardy. If I have any questions, I can call the project coordinator, Colin Reid. I agree that my impaired relative shall participate in this study and I have received a copy of this consent form. NAME: (please print) RELATIONSHIP TO RESIDENT: : SIGNATURE: INTERVIEWER: Name Number DATE: H>#: Interviewer Code: UNIVERSITY OF VICTORIA CENTRE O N A G I N G ICF PROJECT R E S I D E N T D E M O G R A P H I C D A T A C O L L E C T I O N I N S T R U M E N T 1. Date of Interview : : / / Month Day Year 2. Facility/Resident ID Number: L—: /_ 3. Date of Admission . - / / Month Day Year 4. Resident's date of birth: , / / Month Day Year 5. Resident's gender is: Male 1 Female : 2 6. What is resident's ethnicity or cultural background (example Japanese, Dutch, Irish)? 7. What country was the resident born in? 8. What is the resident's first language? -9. What is the resident's religion, i f any? Protestant 1 Catholic 2 O t h e r ...... 3 10. When did the resident come to B.C.? 11. What was the resident's occupation? 130 12. What is resident's current marital status? (SPECIFY O N E C A T E G O R Y O N L Y ) Never married 1 Married 2 Widowed 3 Divorced •• 4 Separated 5 Living together (unmarried ) , 6 Not determined 9 13. How many years of school did the resident complete: No schooling 1 ELEMENTARY Incomplete ; 2 Complete 3 JUNIORHIGH -Incomplete 4 Complete 5 HIGH-SCHOOL Incomplete ....6 Complete 7 NON UNIVERSITY ( ex. Nursing school) Incomplete.. ...8 Complete 9 UNIVERSITY Incomplete 10 Diploma / Certificate 11 Bachelors degree 12 Professional degree 13 Masters degree 14 Doctorate 15 14a. How is the resident's health care paid for? (INDICATE A L L T H A T APPLY): Yes No Medical Services Plan 1 0 Private Insurance: specify: 1 0 Health Maintenance Organization: Specify: 1 0 Veterans Administration 1 0 Private Pay 1 0 Other: Specify: 1 0 14b. How is the resident's stay paid for? Yes No Continuing Care Division (MOH)....... 1 0 Old Age Pension 1 0 Gains - Supplement 1 0 Canada Pension Plan 1 0 User Fee 1 0 Private Insurance: Specify: [ 1 0 Health Management Organization: Specify: 1 0 Private Pay 1 0 Other: Specify: 1 0 15. I am going to read a listing of various categories of income levels. Which of the categories includes the current combined annual income of the resident and their spouse (or spouse equivalent)? Under $4,999 01 $ 5,000- 9,999 02 $10,000- 14,999 03 $15,000- 19,999 04 $20,000 - 24,999 05 $25,000 - 29,999 06 $30,000 - 34,999 , 07 $35,000 - 39,999 08 $40,000 - 44,999 09 $45,000 - 49,999 10 $50,000-54,999 11 $55,000 - 59,999 12 $60,000 - 64,999 13 $65,000-69,999 14 $70,000-74,999 15 $75,000 and above 16 Not determined 99 16. What are the sources of the resident's income? ( I N D I C A T E A L L T H A T A P P L Y ) : Yes No Old Age Pension 1 0 Gains Supplement 1 0 Canada-Pension Plan 1 0 Department of Veterans Affairs 1 0 Company Pension 1 0 Savings 1 0 Employment 1 0 Investment Income 1 0 Other: Specify: 1 0 132, 17. Please indicate previous placement status of resident prior to admission to current facility. Own home alone 1 Own home with someone 2 Specify Someone else's home 3 Specify Supportive / congregative housing 4 Hospital 5 Another facility : 6 Same facility (transfer) 7 Other ; 8 Specify 18. Please indicate length of previous placement. 0- 6 months 1 6 months - 1 year 2 1- 2 years 3 2- 5 years 4 Over 5 years 5 19. How long ago did you notice any changes in the resident's cognitive status? 1-3 years ago 1 Over 3 years - 5 years ago 2 Over 5 years - 7 years ago 3 Over 7 years - 9 years ago 4 Over 9 years ago 5 20. Did the resident receive medical/neurological testing to corifirm dementia? Yes No 1 0 21. Was the onset of cognitive decline abrupt with a step-wise progression of symptoms or insidious with a gradual progression of symptoms? 1 0 9 Abrupt Gradual Other: Specify: 153 Interviewer Code: T2 UNIVERSITY O F VICTORIA C E N T R E O N A G I N G ICF P R O J E C T T H E COHEN-MANSFTJELD A G I T A T I O N I N V E N T O R Y Short Form 1. Date of Interview Month 2. Facility/Resident ID Number: Day Year I I Directions: Please read each of the agitated behaviors and check how often (from 1-5) they were manifested by the participant, over the last 2 weeks; if more than one occurred within a group, add the occurrences (e.g., if hitting occurred on 3 days a week and kicking occurred on 4 days a week, then 3+4 = 7 days; circle 4, once or several times a day). Once or Once or A few or Never 1 Less several several than once times times a week a week a day 2 3 4 continuous for half an hour or more 5 1. Cursing or Verbal Aggression 1 2. Hitting (including self), Kicking, Pushing, Biting, Scratching, Aggressive Spitting (include at meals) 1 3. Grabbing onto people, Throwing things, Tearing things or Destroying property 1 4. Other Aggressive Behaviors or Self Abuse including." Intentional Falling, Making Verbal or Physical Sexual Advances, Eating/Drinking/Chewing Inappropriate Substances, Hurting Self or Others with Inappropriate Substance 1 2 5. Pace, Aimless Wandering, Trying to get to a Different Place (e.g. out of the room or building) 1 2_ 135-T2 Never 1 Less than once a week 2 Once or several times a week 3 Once or several times a day 4 A few or, continuous for half an hour or more 5 6. General Restlessness, Performing Repetitious Mannerisms, Tapping 1 2 3 4 5 7. Inappropriate Dress or Disrobing 1 2 3 4 5 8. Handling Things Inappropriately 1 2 3 4 5 9. Constant Request for Attention or Help 1 2 3 4 5 10. Repetitive Sentences, Calls, Question or Words 1 2 3 4 5 11. Complaining, Negativism, Refusal to Follow Directions 1 2 3 4 . 5 12. Strange Noises, (weird laughter or crying) 1 2 3 4 5 13. Hiding or Hoarding Things 1 2 3 4 5 14. Screaming 1 2 3 4 5 . ©Cohen-Mansfield, 1986. All rights reserved! Interviewer Code:. UNIVERSITY OF VICTORIA CENTRE ON AGING ICF PROJECT R E S I D E N T R E S T R A I N T Q U E S T I O N N A I R E 1. Date of Interview Month Day Year I I I-2. 3. Facility/Resident ID Number: I / In the past week, on the average, for how long each day did the resident have to be restrained? Not at all less than 2 hours more than 2 hours : virtually all the time What types of restraints were used? a) Chest : b) Chair/tray c) Hard waist d) Soft waist... e) Bedrail/full f) Bedrail/part g) Other (specify) h) None Where was the resident restrained? a) room b) hallway c) common room d) Other Please identify the reasons for restraints: (Circle all that apply) a) prevent falls b) change in mental status c) wandering d) inappropriate climbing out of bed e) protect others f) control behavior g) Other . ; , 1 2 3 4 Yes Yes 1 1 1 1 Yes No 0 0 0 0 0 0 0 0 No 0 0 0 0 No 0 0 0 0 0 0 0 138 

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