PLACE IN RETURN BOX to remove this checkout from your record. TO AVOID FINES return on or before date due. DATE DUE DATE DUE DATE DUE Ulnar} Q 2 m: ‘ \_________J \E \ MSU Is An Affirmative Action/Equal Opportunity Institution ABSTRACT SELF-CARE AND THE RELATIONSHIP OF SELECTED VARIABLES TD SELF-CARE: AMONG PRIMARY CAREGIVERS T0 ALZ-IEIHER’S DISEASE PATIENTS By Kathleen A. Powers~LaMoe, R.N., C-F.N.P. The purpose of this retrospective and descriptive study was to describe Alzheimer’s caregivers’ self-care and determine the relationship of independent variables (caregiver: age, sex, education, employment, relation to Alzheimer’s patient, duration of caregiving, health, perceived health, depression, social interaction, amount of assistance from family/friends and impact of caregiving on schedule) with dependent' variables representing caregiver self-care (time—care, physical-care, social-care, sleep-care, diet-care). Data utilized were collected among 120 primary caregivers of Alzheimer’s patients via caregiver interviews and administered questionnaires. Data were analyzed (secondary analysis) using descriptive statistics and hierarchical multiple regression analyses. The significant findings were a positive relationship between: dependent variable ’physical-care’ and independent variable ’caregiver health’; dependent variable ’time-care’ and independent variable ’caregiver depression’; dependent variable ’sleep-care’ and independent variables ’caregiver depression’ and ’caregiver health’; dependent variable ’social-care’ and independent variable ’caregiver depression’. The dependent variable ’diet-care’ was not related to any independent variables in the study. ACKNOWLEDGEMENTS Sincere thanks and appreciation are extended to Barbara Given, R.N., Ph.D. and Charles II. Given, Ph.D. for the use of their data that made this study possible. Without their help this study would not have been possible. I would also like to thank the other members of my committee, Sharon King, R.N., Ph.D., Patty Peek, R.N., MSN and Linda Spence, R.N., MSN, for their feedback and encouragement throughout the study. I especially appreciate the support and responsiveness they demonstrated during the ’long-distance’ phase of completing this project. A special note of gratitude is extended to Manfred Stommel, Ph.D., who spent many hours assisting me with computerized data analysis. There is no doubt this study would not have been completed without him. Finally, 1 owe the greatest debt of thanks and appreciation to my family and friends for standing by me throughout the process of completing this study. To my husband Jeff, thank-you for being understanding, supportive, and most of all, patient. iii TABLE OF CONTENTS LIST OF TABLES . . . . . . . . . . . . . . . . . . . . viii LIST OF FIGURES. . . . . . . . . . . . . . . . . . . . ix CHAPTER I. THE PROBLEM . . . . . . . . . . . . . . . . 1 Introduction and Background . . . . . . . . 1 Purpose of the Study . . . . . . . . . . . 7 Problem Statement . . . . . . . . . . . . 9 Definition of the Variables . . . . . . . . 11 Caregiver . . . . . . . . . . . . . . . . 11 Age . . . . . . . . . . . . . . . . . . . 12 Sex . . . . . . . . . . . . . . . . 12 Marital Status . . . . . . . . . . . . 13 Duration of Caregiving . . . . . . . . . 14 Education . . . . . . . . . . . . . . . . 14 Employment . . . . . . . . . 15 Caregiver’ 5 Relation to Patient . . . . . 15 Caregiver Health . . . . . . . . . . 16 Caregiver Perceived Health . . . . . . . 17 Caregiver Depression . . . . . . . . . 18 Caregiver Social Interaction . . . 19 Caregiver Assistance From Family/Friends. 20 Impact of Caregiving on Schedule . . . . 21 Caregiver Selfcare . . . . . . . . . . . 22 Assumptions . . . . . . . . . . . . . . . . 2 Limitations . . . . . . . . . . . . . . . . 23 Overview of Chapters . . . . . . . . . . . 24 ll. CONCEPTUAL FRAMENORK . . . . . . . . . . . 26 Overview . . . . . . . . . . . . . . . . 26 Orem’ s Theory of Self- Care . . . . . . . . 27 Pender’ s Health Promotion Model . . . . . . 31 Conceptual Framework Description . . . . . 37 Concept Definitions . . . . . . . . . . . . 39 Caregiver Selfcare . . . . . . . . . . . 39 Demographic Characteristics . . . . . . . 4i Biologic Characteristic . . . . . . . . . 42 Psychological Characteristic . . . . . . 43 Situational Factor . . . . . . . . . . . 44 Interpersonal Influence . . . . . . . . . 45 iv CHAPTER Behavioral Support . . . . . . . . Perceived Health Status . . . . Relation of Concepts to Study Variables Orem’ 5 Theory of Nursing Systems Summary . . . . . . . . . . . REVIEW OF THE LITERATURE Overview . . . . . . . Pender’ s Health Promotion Model . . . . Concepts: Caregiver Self- Care . . . Demographic Characteristics . Caregiver Relation to Patient Caregiver Sex . . . . . . Caregiver Age . Caregiver Education . . . Caregiver Employment Duration of Caregiving Biologic Characteristic Perceived Health Status Psychological Characteristic Situational Factor Interpersonal Influence Behavioral Support A Nursing Perspective ”Status” of Current Study Summary . . . . . . . . METHODOLOGY AND PROCEDURES Overview . Research Questions Population Sample . . . Original Study Description Operationalization of the Study Variables Self- care . . . . . . . . . . . . . Demographics . . . . . . . . . . Health . . . . . . . . . . . . . Perceived Health . . Depression . . . . . Impact on Schedule . . . . . . . . . . Social Interaction . . . . . . . Assistance from Family/Friends Development of Instruments . . . . . . . Scoring . . . . . . . . Self-Care Demographics Health 47 48 51 51 55 56 56 57 58 63 64 66 67 68 69 70 72 74 76 80 83 86 89 90 92 93 93 94 94 95 96 96 96 97 99 99 100 100 101 101 102 104 104 105 106 CHAPTER VI. Perceived Health . . . . . . . . Depression . . . Impact on Schedule Social Interaction . . . . . Assistance from Family/Friends Validity . . . . . . . . . . . . . . Reliability . . . . Data Collection Procedures Human Subjects Protection . Statictical Analysis of Data . Summary . . . . . . . . . . . . . . . . . DATA PRESENTATION AND ANALYSIS. Overview. Sample Characteristics. Sociodemogrpahic Variables. Non-Sociodemographic Variables. Discussion of Non-Sociodemographic Variables . . . . . . . . . . Caregiver Perceived Health. Caregiver Health. Caregiver Depression. . Caregiver Social Interaction. Impact of Caregiving on Schedule. Amount of Assistance From Family/Friends Dependent Variables . . . . . . Discussion of Dependent Variables Research Questions. . Reliability of Instruments. Data Presentation (1) . . Discussion of Data Presentation (1) Data Presentation (2) Regression Analyses . . . . . . . Discussion of Regression Analyses Summary . . . . . . . . SUMMARY AND CONCLUSIONS Overview. . . . . . . . . . Sociodemographic Characteristics of the Sample. . . . . . . . . . . . . . . Non- Sociodemographic Characteristics of the Sample. . . . . . . . . . . . . . . Statement of the Research Questions Conclusions for Research Question 1 . . . Conclusions for Research Question 2. Implications for Nursing Practice Implications for Nursing Education. Implications for Future Research. Summary . . . . . . . . . . . vi 106 107 107 107 108 109 110 114 115 116 118 119 119 119 120 122 125 125 126 126 126 127 127 128 130 131 131 134 136 139 143 148 152 153 153 154 158 165 166 169 175 180 182 186 APPENDICES A. UCRIHS LETTER OF APPROVAL . . . . . . . . . 188 B. CONSENT FORM FROM THE ORIGINAL STUDY. . . . 189 C. QUESTIONNAIRE ITEMS FROM ORIGINAL DATA COLLECTION INSTRUMENT . . . . . . . . . . . 190 REFERENCES . . . . . . . . . . . . . . . . . . . . . 197 LIST OF TABLES Relationship of Theoretical Concepts and Study Variables . . . . . . . . . . . . . Operational Definitions of the Demographic Variables . . . . . . . . . . . . Scoring of the Demographic Variables. . . . . Summary Table of Phase I Testing. . Summary Table of Self-Care Dimensions . . . . Distribution of Subjects by Sociodemographic Variables . . . . . . . . . . . . . . . . . Distribution of Subjects by Non-Sociodemographic Variables. . . Distribution of the Dependent Variables Mean, Standard Deviation, and Coefficient Alpha for All Study Scales. . . . . . . . Distribution of Subjects by the Original 25 Self-Care Questionnaire Items . . . . . . . . Results of Hierarchical Regression Analyses *1, *2, and #3. . . . . . . . . . . . . . . . Correlation/Beta Values For All Independent and Dependent Variables . . . . . . . . . . . viii . 98 .105 .111 .112 .119 .122 .128 .132 .134 .144 .146 LIST OF FIGURES FIGURE 1. Orem’s Theory of Self-Care . . . . . . . . . . . 28 2. Pender’s Health Promotion Model. . . . . . . . . 33 (I) Adaptation of the Modified Orem and Ponder Models to the Study Variables. . . . . . . . . . 38 ix CHAPTER 1 The Problem Introduction and Background Alzheimer’s Disease is a progressive, irreversible, neurological disorder affecting an estimated 2.5 million American adults (Alzheimer’s Disease and Related Disorders Association, ADRDA, 1987). The disease, first described by German neurologist Alois Alzheimer in 1906, is currently the most common form of dementing illness (ADRDA, 1987). With an insidious onset. Alzheimer’s Disease progresses gradually toward death. Average duration of the disease is five to ten years, however this varies considerably for each person (Gwyther and Matteson, 1983). With an annual mortality rate of 100,000 lives, Alzheimer's Disease is the fourth leading cause of death in adults, following heart disease, cancer, and stroke (ADRDA, 1987). No definitive cause or cure for Alzheimer’s Disease is yet known. Diagnosis can only be confirmed via post mortem examination of brain tissue for the classic Alzheimer pathology of neurofibrillary tangles, neuritic plaques and granulovacular changes (United States Department of Health and Human Services, 1987). Most victims are over 65 years old, however, Alzheimer’s Disease can strike in the fourth and fifth decades of life (ADRDA, 1987). There is currently debate as to whether Alzheimer’s occurring before age 65 differs significantly from the same disease occurring after age 65 (Lampe, 1987). Some studies (Bird, Stranaham, Sumi, Raskind, 1983; Bondareff, 1983) have reported Alzheimer’s disease occurring in a younger person is 1 more severe and involves more extensive biochemical abnormalities. The debate is unresolved. An aspect of Alzheimer’s disease not in question is its manifestation in America’s increasing elderly population. The incidence of Alzheimer’s Disease increases from 5% for those over 65 years of age, to 20% for those over 80 years (Kahan, Kemp, Staples, Brummel-Smith, 1985). With the "graying” of America, the over 65 population (29 million) will increase to 35 million in the year 2000 and to 51 million in the year 2020 (Staff, 1987). Understandably, the National Institute on Aging (NIA) has made Alzheimer’s Disease a priority issue and estimates that 3.8 million people will be affected with the disease by the year 2000, and 8.8 million by 2050 (Staff, 1987). These statistics clearly validate Alzheimer’s Disease as a major concern of caregivers, clinicians. and policy makers, whose task is managing the disease both present and future. Symptoms of Alzheimer’s Disease include, "a gradual memory loss. decline in ability to perform routine tasks, impairment of judgement, disorientation, personality change, difficulty in learning, and loss of language skills" (ADRDA, 1987, p.1). The rate of deterioration varies for each person however, the disease eventually renders all victims totally incapable of caring for themselves. It is this eventual outcome of total dependency which produces the so called "two victims” of Alzheimer’s Disease -- the patient and the caregiver (O’Connor, 1987). A The caregiving aspect of Alzheimer’s accounts for a significant portion of the economic impact of the disease. 3 ”Approximately 60% of all nursing home patients are affected with Alzheimer’s or a related disorder. Average cost for nursing home care is $25,000 per year" (Staff, 1987. p.15). Be that as it may, the nursing home population of Alzheimer’s patients remains small in comparison to Alzheimer patients cared for in the home. ”Of the 2.5 million Americans with Alzheimer’s, 1.5 million are cared for in the home . . . with an average annual cost to the family of $18,000” (Staff, 1987, p.15). In sum, the national cost of Alzheimer’s is estimated to be $40 billion per year, accounting for physician costs, nursing home charges, and lost wages of caregivers and patients alike (Staff, 1987). In the literature of the past five years, the finding that family members make-up the major component of the long-term care delivery system for impaired older adults, has evolved from insight to accepted fact (Cantor, 1983; Clark and Rakowski, 1983; Deimling and Bass, 1986; Fenger and Goodrich, 1979; Gilhooly, 1984; Goldman and Luchins, 1984; Goldstein, Regnery, Wellin, 1981; Haley, 1983; Johnson and Catalano, 1983; Montgomery, Gonyea, Hooyman, 1985; Sheldon, 1982; Soldo and Myllyluoma, 1983; Zarit, Reever, Bach-Peterson, 1980). Faced with a growing need for long-term care services at a time when public resources are shrinking, the family is increasingly called upon to fill the primary caregiver role for dependent older adults (Montgomery et al. 1985). Support from individual family members or others is commonly referred to, in the literature, under the rubric of "family caregiving” (Johnson and Catalano, 1983). ”Family caregiving” is a misnomer for a phenomena defined by Shanas (1979) as the 4 principal of substitution. The principal of substitution involves individuals providing care in serial order rather than as a shared functioning unit (Johnson and Catalano, 1983). The most common serial order of primary caregivers places the spouse as the first primary caregiver, followed by a child, and in the absence of offspring, another individual is designated as the primary caregiver (Johnson, 1983). The number of research reports and articles on individuals assuming major responsibility for a person with Alzheimer’s Disease is expanding (Barnes. Raskind, Scott, Murphy, 1981; Caserta, Lund, Wright, Redburn, 1987; Chenoweth and Spencer, 1986; Colerick and George, 1986; Gwyther and Matteson, 1983: Kahan et a]. 1985; Pratt, Wright, Schmall, 1987; Pratt, Schmall, Wright, Cleland, 1985: Scott, Roberto, Hutton, 1986; Williams-Schroeder, 1984; Winogrond, Fisk, Kirsling, Keyes, 1987; Zarit and Zarit, 1982). The works of the aforementioned author-s support the observation that individuals caring for a person with Alzheimer’s Disease are at risk for a variety of negative effects. These negative effects are referred to in the literature under the general term of, caregiver burden (Poulshoch and Deimling, 1984). George and Gwyther (1986) define caregiver burden as, ”the physical, psychological or emotional, social, and financial problems that can be experienced by family members caring for impaired older adults” (p. 253). The converse of caregiver burden, is the notion of caregiver well-being. Dimensions of caregiver well-being found in the literature include: caregiver health, caregiver mental health, caregiver participation in social and recreational activities, caregiver use or non-use of psychotropic drugs, and caregiver financial resources/economic status (Colerick and George, 1986; George and Gwyther, 1986; Pratt et al. 1987). As noted by George and Gwyther (1984), "it appears that caregiver burden and caregiver well-being are but opposite sides of the same coin" (p.2). Nevertheless, the investigation of caregiver well-being has resulted in documentation that Alzheimer caregivers often shoulder the burden of caregiving beyond healthful limits (Barnes et a1. 1981; Cantor, 1983; Chenoweth and Spencer, 1986; Colerick and George, 1986; George and Gwyther, 1986; Goldstein et al. 1981; Gwyther and Matteson, 1983; Pratt et al. 1987; Scott et al. 1986). Alzheimer caregivers are observed to disregard their own well-being in order to continue their availability to the Alzheimer victim (Gwyther and Matteson, 1983). This action on the part of Alzheimer caregivers appears paradoxical, as the caregivers own well-being will ultimately impact the caregivers ability to execute the caregiving role. It is this paradox, which created the premise to explore an area largely unreported on in the caregiver literature to date, this is the self-care practices of caregivers of Alzheimer patients. The rational for investigating the self-care practices of Alzheimer caregivers is three-fold. First, current literature is devoid of a description of Alzheimer caregivers’ self-care practices. Second, variables need to be identified which inhibit or promote the Alzheimer caregivers’ level of self-care. The 6 contention here being that, the more caregivers attend to their own self-care, the longer they vdll remain viable in the caregiving role. Health professionals are concerned about the caregivers capabflity to provide long-term care. TWfird, methods are needed to monitor and assist the caregiver in maintaining or achieving adequate care of themselves. Atheimer caregivers need assistance with self-care because the reported general attitude of caregivers hm "whatever the physical, psychological, and other costs of caretaking, they are the price one pays to avoid or defer institutionalizing the patient" (Goldstein et al. 1981, p. 27). Despite the hardships, caregivers appear to be strongly and genuinely motivated by a desire to keep the patient at home (Goldstein et al. 1981). It is obvious that humans spend a large portion of their lives caring for themselves. While public interest in self-care has grown within the past decade, nurses have long recognized the importance of clients achieving competence in their own self-care. Orem%;(1985) self-care deficit theory of nursing, provides a framework for nursing as a practice discipline. Within Oremfls framework, self-care is designated as a universal requirement for health maintenance and continued ert(0rem, 1985L Furthermore, Orem u985) states that, Wunwflng is made legitimate by humans’ continuous need for self-maintenance and self-regulation” (p. 107). Orem’s self-care deficit theory of nursing is utilized in this study as a guiding conceptual framework for exanfining the relationship of the concepts: caregiving, self-care, and nursing. The concepts: caregiving, 7 self-care, and nursing, are analyzed within the context of caregiving; in the Alzheimer’s Disease setting. To further describe and explain the phenomenon of self-care, a second theoretical model, Pender’s (1987) health promotion model, is also incorporated into the conceptual framework of this study. Pender’s model is used to look specifically at the caregiver and factors which may modify the level of self-care, or health promotive activities the caregiver performs. The frameworks of Orem (1985) and Pender (1987), are used to produce a theory based investigation of Alzheimer caregivers self-care, and determine what affect selected variables have in moderating the level of caregiver self-care. Data from this study will be used to discuss how nursing systems in primary care may be utilized to positively impact Alzheimer caregivers self-care. Purpose of the Study The purpose of the study is twofold. The first study purpose is to describe the self-care practices of a group of primary caregivers to Alzheimer patients. The second purpose of the study, is to determine what relationship selected independent variables share with the dependent variable of caregiver self-care. The results of this study can be used to document the self-care practices of a group of primary caregivers to Alzheimer patients. The research can also provide empirical evidence of how selected study variables affect the caregivers’ 8 level of self-care. As a result of the framework developed for this study, modified versions of Orem (1985) and Pender’s (1987) models wiH gain support as theoretical frameworks used to analyze self-care and health promotion respectivehm Research of Alzheimer caregivers self-care and variabdes which impact the caregivers self-care practices is necessary to develop strategies to improve or maintain caregivers level of self-care. 9 ProbleLStatement The specfific questions are: 1. What are the reported self-care practices of a group of primary caregivers to Atheimer patients? 2. What relationship do selected variables have vdth the caregivers’ performance of self-care? Specifically: How are the following independent variables associated with the Alzheimer caregiver’s self-care? Caregiver age. Caregiver sex. Caregiver marital status. Duration of caregiving. Caregiver education. Caregiver employment status. Caregiver relation to Alzheimer patient. Caregiver health. Caregiver perceived health (self-perception). Caregiver depression. Social interaction of caregiver. Amount of assistance caregiver receives from family and friends. Impact of caregiving on caregiver schedule. Research is needed to answer these questions. The data can be used to answer questions concerning the correlation of caregiver: demographics, health, depression, perceived health, schedule, assistance from family and friends and social interaction, with the dependent variable -- caregiver self-care. Data from previous studies documents the negative impact caregiving has on the caregiver’s health status (George and Gwyther, 1986; Haley, 1986; Pratt et al. 1985; Pratt et al. 1987). Data from this research study is presented to document the effect caregiving has on the caregiver’s self-care practices. 10 Knowledge of caregiver self-care practices is essential to clinicians, who recognize self-care as a determinant of quality of life and longevity. The data from this study can be used to provide information to improve understanding of caregiver self-care practices and the impact selected variables have on caregiver self-care. The need to investigate the self-care behavior of caregivers is supported by the fact that self-care constitutes 75% of all health care in the United States (Pender, 1987). Therefore, to address the self-care competence of a caregiver is to address a significant portion of the caregiver’s health needs. Professional nurses can also benefit from the study results, as a contribution to the development of strategies to treat, ”self-care deficit” an accepted nursing diagnosis (Gordon, 1982). Information on caregiver self-care is a first-step in investigating self-care as a means of promoting caregiver viability and health. Exploring the impact of selected variables on caregiver self-care aids in identification of high risk caregivers (i. e. those caregivers at risk for low self-care). Futhermore, understanding how selected variables affect caregiver self-care will provide answers as to how caregiver self-care is helped or hindered. Providing support to the Alzheimer caregiver is a timely goal. This research study is a contribution toward reaching that goal. The data utilized in the study to answer the research questions were collected as part of a federally funded research 11 project, The Impact of Alzheimer’s Disease on Family Caregivers (ZROiMH41766, 1986) C.W. Given and C. Collins, co-principal investigators. Definition of Variables The independent variables in this study are the caregivers’: age, sex, marital status, duration of caregiving, education, employment status, relation to Alzheimer patient, health, perceived health status, depression, social interaction, amount of assistance from family and friends, and, schedule (impact of caregiving on caregiver’s schedule). The single dependent variable is caregiver self-care. Caregiv_e_r~ In this study, caregiver is defined as, ”a person who identifies themself as the primary person responsible for the care of the Alzheimer patient in their charge” (Given and Collins, 1986, p. 68). To be defined as a caregiver in this study, the individual must also be: residing with the Alzheimer patient, and related to the Alzheimer patient (Given and Collins, 1986). Furthermore, caregivers must also be able to read and write, not blind, and ambulatory, with no acute or unstable medical conditions (Given and Collins, 1986). The reason for the caregiver criteria listed above is explained as the other study variables are defined. Demogrgghic Variables The independent variables in the study are further broken down into demographic variables and non-demographic variables. The demographic variables of the study are caregiver: age, sex, marital status, education, employment status, relation to Alzheimer patient, and duration of caregiving. Caregiver Age Caregiver age is defined as the length of time a caregiver has lived, as measured in chronological years. No age qualifications were required to participate in this study, caregivers of any age were permitted as subjects. Including caregivers of all ages is a "mixed blessing”. Using caregivers of various ages increases the effect of sample variation in study measurements. Furthermore, younger caregivers may be involved in a "dual” caregiving role of caring for their young children and elderly parents at the same time. Younger caregivers are likely to experience stressors unique to their situation, and different from the experiences of older caregivers. The lack of sample homogeneity in regard to caregiver age will be addressed later in Chapter VI. Caregiver Sex Caregiver sex is defined as the caregiver’s gender, male or female. The importance of caregiver sex as a study variable is highlighted by Cantor (1983). "The homogenization of such crucial variables as type of relationship, sex, age, health and work status of caregivers, has resulted in obscuring the differences 13 among various groups of caregivers and the types of stress each may be experiencing in the process of giving assistance" (p. 597). As a demographic variable, sex has been clearly shown to be correlated with use of health care services (more frequent use by females). In regard to the use of preventive services in the absence of symptoms, sex is the demographic variable most predictive of preventive behaviors and women exhibit a predisposition to engage in preventive behaviors more frequently than men (Pender, 1987). While the vast majority of caregivers are. female, male caregivers are becoming more prevalent, especially in Alzheimer cases where a male spouse may be required to fill the caregiving role for his affected wife (Cantor, 1983). For a male, caregiving duties may represent a reversal of long-established roles and life patterns, increasing the potential for stress in a male caregiver (Cantor, 1983). For the purpose of this study, caregiver sex is included to examine caregiver self-care practices in relation to caregiver gender. Caregiver Marital StJatus Marital status of the caregiver is defined as the caregiver’s current conjugal affiliation. Cantor (1983) reports that, ”In many ways spouses appear to be the high risk group among caregivers. Their household incomes are the lowest, of all caregivers, and as one would expect, they are more likely to be old themselves” (p. 599). In regard to caregiver strain or burden, Cantor (1983) notes the most important variable by far is 14 the type of caregiver and his or her relationship to the care-receiver. "The closer the bond, the greater the amount of strain, placing spouses at highest risk” (Cantor, 1983, p. 601). For the purpose of this study, caregiver marital status is evaluated as a variable which may affect the caregiver’s self-care behavior. Duration of (Zaregiving Duration of caregiving is defined as the length of time (as measured in years and/or months) the person designated as the primary caregiver, has provided or coordinated the resources required by the Alzheimer patient (Zarit et al. 1980). While there is currently a paucity of longitudinal studies of caregiving, one study by Gilhooly (1984) found unexpected correlations between duration of caregiving and caregiver morale and mental health. ”The longer the supporter had been giving care, the higher his or her morale and the better their mental health” (Gilhooly, 1984, p. 40). For the purpose of this study, duration of caregiving is assessed as a possible variable impacting a caregiver’s level of self-care. Caregiver Educgtion Caregiver education is defined as the highest level of formal study or training the caregiver has achieved. Caregiver education is commonly used as a demographic variable and appears in several research studies (Colerick and George, 1986; Cantor, 1983; Johnson and Catalano, 1983; Pratt et al. 1985; Zarit et al. 1980). Caregiver education is frequently collected as part of the demographics, yet there is little mention of 15 caregiver education in the results sections of the aforementioned studies. To understand its affect as a study variable, caregiver education must be explored beyond a frequency measure. For the purpose of this study, the correlation of caregiver education to caregiver self-care is explored. Caregiver Employment Stjagus Employment status of the caregiver is defined as the caregiver’s current status of being either employed or unemployed. Caregiver employment emerged as a predictor of institutionalization among Alzheimer caregivers in a study by Colerick and George (1986). It must. be noted however, that the employed caregivers in Colerick and George (1986) were employed daughters who reported high stress due to their conflicting commitments as an employee and a caregiver. Due to the age criteria for this study, many of the caregivers are likely to be retired. Nevertheless, the effect of caregiver employment status on caregiver self-care is unknown and will be evaluated in this study. Caregiver Relation to Alzheimer Patient Caregiver relation to the Alzheimer patient is defined as the familial or social relationship the caregiver and Alzheimer patient share. The nature of the patient-caregiver bond is reported as an important factor in: caregiver morale and mental health, (Gilhooly, 1984) probability of institutional placement of the patient, (Colerick and George, 1986) and caregiver ability to get along well with the patient (Cantor, 1983). In addition, 16 Poulshock and Deimling (1984) report spouse caregivers have more obvious signs of decreased well-being on objective measures, but report less subjective strain than adult child caregivers. The impact of caregiver/patient relation on caregiver self-care is investigated in this study. Non-Demographic Variables The non-demographic, independent variables include caregiver: health, perceived health status, depression, social interaction, amount of assistance from family and friends, and the impact of caregiving on the caregiver’s schedule. The definitions of these variables follow. Caregiver Health Efforts to define health as a human phenomenon are constantly evolving and at any point in time many definitions exist (Dunn, 1980; Hoyman, 1975; Orem, 1985; Patrick, Bush, Chen, 1973; Wylie, 1970). One of the most frequently cited definitions of human health is the 1974, World Health Organization (WHO) definition, ”Health is a state of complete physical mental, and social well-being and not merely the absence of disease and infirmity” (Murray, Nolan, Leonard, Zentner, 1979, p.5). The WHO (1974) definition of health has been criticized as being an ideal rather than a realistic goal for human health (Pender, 1987). The nurse theorist, Orem, offers a definition of health; "Health is a term used to describe living things when they are structurally and functionally whole or sound” (Orem, 1985. p. 173). 17 Pender does not define health, but proposes that the state of the art in-defining health lies in the answers to five questions. 1. Is health a separate and distinct concept from illness or is illness subsumed within the broad concept of health? 2. Does health represent a state to be attained or an ongoing dynamic process throughout the life cycle? 3. Are health and wellness the same or different constructs? 4. Is the definition of health universal or culturally specific? 5. Is health a multilevel concept applicable to individuals, families, communities, and societies? (Pender, 1987, p. 16) In this study, health refers to the iHness level of the caregiver. Here, health of the caregiver is defined as the number of chronic diseases or physical problems the caregiver experiences, and the degree to which these diseases or problems negatively impact the caregiverks life-style. This is not a purely objective measure of caregiver health, yet, for the purpose of this study, the variable caregiver health, is designated as an objective assessment of the caregiver’s health. Caregiver Perceived Health Status Perceived health status is defined as the rating or condithon.a person selects to describe his/her current physical health. Therefore, perceived health status is a personks subjective evaluation of his/her own state of health. Haley 0986) comments on the use of perceived health as a study variable; ”The standard single-item scale (i=excellent 2=good 3=fair 4=poor) used in many studies to assess a personks perceived health status, has been shown to correlate tdghly with physician ratings of health, and to be a better predictor of 18 subsequent mortality than objective health ratings" (p. 13). In this study, the caregiverks perceived health status is defined as a subjective measure and is collected in the manner described by Haley usasx Caregiver Depression Various definitions of depression exist, due to the various degrees and contexts in which the phenomenon of depression occurs. Burgess and Lazare 0976) outfine four defhfitional categories of depression. 1. Depression as a mood state. 2. Depression as a syndrome or symptom complex. 3. Depression as a disease process or diagnostic category. 4. Depression as a complex of psychodynamic mechanisms. (p. 213) Wflflfin each of the categories above are terms used to define the depression more specfificalhm When depression k; described as a mood state.it is important to dfiferewmiate the mood of sadness from the mood of depressnn1(Burgess and Lazare, 1976). A dichotomy with considerable clinical value in defihfing depression as a syndrome or symptom complex,is the reactive or endogenous distinction. Briefly, reactive depression is based on a precnfitating event, whereas in endogenous depression the precipitant is not evident (Burgess and Lazare, 1976L Depression as a disease process or diagnostic category often includes distinctions between unipolar and bipolar depression (Burgess and Lazare, 1976). Unipolar depression lacks a cycle of mamda, whereas tfipolar depression refers to recurrent marfic attacks with or without depressive episodes (Burgess and 19 Lazare, 1976). The definition of depression as a complex of psychodynamic mechanisms, is based on psychodynamic theories developed to explain the phenomenon of depression. For the purpose of this study, caregiver depression is defined in the psychodynamic theory mode as, ”An ego state in which the individual’s emotional expression of helplessness and powerlessness occurs. The depression, as an ego state, is characterized by loss of self-esteen in reaction to three dynamic issues: 1) the wish to be worthy, loved and appreciated; 2) the wish to be good, loving, and unaggressive; 3) the wish to be strong, superior, and secure” (Burgess and Lazare, 1976, p. 220). A limited amount of research is available at this time on caregiver depression (Haley, 1986; Pagel, Becker, Coppel, 1985). A review of available articles and research pertinent to caregiver depression is provided in Chapter Three of this study. Caregiver Social Interaction The social interaction of the caregiver is defined as the quantity and types of contacts caregivers have with others in their environment (Given and Collins, 1987). As a study variable, caregiver social interaction is defined as a measure of how socially connected or isolated the caregiver is. The importance of caregiver social interaction is documented through the research of Zarit et al. (1980). In their study, the extent of burden reported by primary caregivers was not related to the severity of the patient’s Alzheimer disease, but was associated with the number of visitors to the household (Zarit 20 et al. 1980). No information was elicited on what visitors were doing or the quality of the visits. Nevertheless, the sheer quantity of visits from other people was important to relieving the caregiver’s sense of burden (Zarit et al. 1980). For the purpose of this study, caregiver social interaction is evaluated for any correlation with the dependent variable, caregiver self-care. Caregiver Almount of Assistance From Family and Friendg Caregiver amount of assistance from family and friends is defined as the assistance family and friends provide in performing tasks for the caregiver (Given and Collins, 1987). In this study, the tasks family and friends may assist with include: routine chores, heavy cleaning, transportation, making meals, watching the Alzheimer patient so the caregiver may have time away, and, legal or money matters (Given and Collins, 1987). For the purpose of this study, assistance from family and friends is labeled as behavioral support and may be thought of as a dimension of social support for the caregiver. Research on the absence or presence of assistance for the primary caregiver, supports the finding that the higher the level of practical or behavioral support, the lower the caregiver’s perceived sense of burden (Goldstein et al. 1981; Montgomery et al. 1985; Scott et al. 1986; Scott et al. 1987; Zarit and Zarit, 1982). In this study, the amount of assistance provided to the caregiver by family and friends is evaluated for any correlation with thedependent variable, caregiver self-care. 21 A brief comment on the two previous variables, caregiver social interaction and caregiver amount of assistance from family and friends. When combined, these variables yield a definition befitting the construct -- sdcial support. As Dimond and Jones (1983) note in their conceptual analysis of social support: ”diverse definitions of social support abound, yet these definitions converge on several points” (p. 238). Hubbard, Muhlenkamp and Brown (1984) offer the idea of social support as a multifaceted construct comprised of, "the communication of positive affect, a sense of belonging or social integration and elements of reciprocity” (p. 266). Researchers have begun to explore the relationship between what people do to promote healthy life-styles, and how they perceive their level of social support (Hubbard et al. 1984). This relationship between self-care and social support has not been investigated among Alzheimer caregivers. The current study will determine what impact the variables, caregiver social interaction and caregiver amount of assistance from family and friends have on Alzheimer caregivers’ self-care practices. Impact of Caregiving on Caregiver’s Schedule The impact of caregiving on the caregiver’s schedule is defined as the degree to which caregiving alters the caregiver’s normal daily schedule (Given and Collins, 1987). Due to the added demands of caregiving, the amount of time available to the caregiver for personal needs or routines may change. In an effort to identify factors related to caregiver objective burden, Montgomery et al. (1985) reports, ”tasks that confine the 22 caregiver in terms of time schedules and/or geographic location, were found to best predict objective burden” (p.24-25). Many caregivers report that being awakened by the patient at night is the most disruptive occurrence in their normal schedule (Goldstein et al. 1981). It seems logical that interruptions in the caregivers’ normal schedule and/or free time may effect the caregivers’ self-care practices. This study will determine what impact caregiving has on the caregivers’ schedule and how this in turn impacts the self-care practices of the caregiver. Caregiver Selfcare As the single dependent variable in the investigation, caregiver self-care is the outcome variable of interest. Selfcare practices are defined by Steiger and Lipson (1985) as, "activities initiated or performed by an individual, family or community to achieve, maintain or promote maximum health" (p. 12). Pender (1987) defines self-care as, "actions directed toward minimizing threats to personal health, self-nurturance, self-improvement, and personal growth” (p. 185). Orem (1985) offers a definition of self-care as, "the practice of activities that individuals initiate and perform on their own behalf in maintaining life, health and well-being” (p. 84). For the purpose of this study, caregiver self-care is defined as generic (not gender specific) activities, performed by caregivers in the areas of: nutrition, disease prevention, exercise, and stress reduction/relaxation, to improve or maintain good health. The link between health practices and health has been well documented, (United States Department of Health, 23 Education, and Welfare, 1979) and few would dispute the fact that a person’s life-style has a significant impact on the individual’s health. Studies have been done to examine the impact caregiving has on the caregiver’s physical and/or mental health (Deimling and Bass, 1986; George and Gwyther, 1986; Haley, 1986; Gilhooly, 1984; Poulshock and Deimling, 1984; Pratt et al. 1987). What is unknown, and the focus of this research, is what relationship caregiving has with the caregiver’s self-care practices and/or behaviors. Assumptions The following assumptions are made in this research: 1. The concepts outlined in the conceptual framework and defined in Chapter Two of this study, are real and measurable phenomena. 2. Measuring the impact of the identified independent variables is a reliable method of measuring the effect of caregiving on the dependent variable caregiver self-care. 3. Caregiver self-care behaviors can impact and/or improve the caregivers health status and viability in the caregiver role. Limitations This research has the following limitations: 1. Subjects who agreed to participate in this study had to meet specific criteria to be selected. Therefore, it is probable that the findings are not representative of all primary caregivers of Alzheimer patients. 24 2. The points in time at which data were collected may not be representative of the usual perceptions and behaviors of the study participants. Other points in time may be more representative. 3. The study is cross-sectional, and a convenience sample is utilized. Another study design (i. e. longitudinal), and another method of sampling (i. e. random), may be more appropriate, and enhance the generalizability of results. 4. The need to express a socially desirable response may have affected the responses of participants. 5. All possible factors affecting caregiver self-care practices are not addressed in this study. Findings may be due, in actuality, to an interrelationship of factors other than the ones identified in the study. Examples of such factors which are not included in this study are: the caregivers’ self-efficacy, caregivers’ perceived benefits or barriers to self-care practices, and caregivers’ perceived control of their own health. Overview of Chapters Presentation of this study is organized into six chapters. Included in Chapter One is the introduction, the purpose of the research, the problem statement and research questions, the background of the problem, definitions of the study variables, and the assumptions and limitations of the study. In Chapter Two, the concepts and relevant theory are integrated into a conceptual framework that is the basis for the study. A 25 review of the literature is presented in Chapter Three, linking this research with the work and ideas of others concerned with the health and well-being of caregivers. A presentation of the methods of research used to conduct the study is found in Chapter Four. Included are the sampling procedure, research design, instrumentation, and procedures for informed consent and human rights protection. Data and analyses are presented in Chapter Five. A summary and discussion of findings, implications for nursing and primary care, and recommendation for future research are presented in Chapter Six. CHAPTER H Conceptual Framework Overview This chapter includes a discussion of the research problem through epocetion of the theoretical concepts which form the conceptual framework of the study. Orgardzed into sections, the chapter begins with a brief discussion of Oremks<1985) theory of self—care and Penderks (1987) health promotion model. 'The aforementioned theory and model are presented first, to show the origins of the conceptual framework developed for this investigation. Next, a description of the relationship between the study variables and the theoretical concepts is presented. Lastly. Oremks(1985) theory of nursing systems is utined to support the link between this research and nursing theory/practice. To reiterate, the purpose of the study is to examine the relationship of caregiver: age, sex, marital status, duration of caregiving, employment status, relation to Alzheimer patient, health status, perceived health status, depression, social interaction, assistance from fandly and friends, and schedule interruptions due to caregiving,udthin a conceptual framework to determine what effect these variables have on caregiver self-care behavior. 27 Orem’s Theory of Self-Care Orem refers to her self-care deficit theory of nursing as a general theory of nursing (Orem, 1985). This general theory of nursing is constituted by Orem (1985), from three related theoretical constructs; 1. The theory of self-care deficits. 2. The theory of self-care. 3. The theory of nursing systems. (p. 33) In sum, Orem U985) proposes three separate but artnnnated theoretical constructs udthin the (generaD self-care defhfit theory of nursing. For the purpose of this study, only two of the three theoretical constructs proposed in Orenfls U985) self~care defhfit theory of nursing are utined (L e. the theory of self-care and the theory of nursing systemsx A modfified version of Orenfls U985) theory of self-care is incorporated into the conceptual framework of this research. Later in this chapter, Oremks(1985) theory of nursing systems is used to support the link between this research and nursing theory/practice. To illustrate Orem’s theory of self-care, a model is presented in Figure 1. The theoretical construct self-care, is based on Orem’s (1985) proposition that, ”self-care and dependent care are systematized, deliberate actions that, when continuously and effectively engaged in, regulate structural integrity, human functioning, and human development, as necessary for the continuance of life" (Orem, 1985, p.85). The model in Figure 1, combines two models from Orem (1985, p. 85) to 28 Eow< choc—om BBS Eom< Boo LEE—coon >> \/ Boson. _5=o§>5 Lo cons—$2 o. 3.85. 26 u m 88 Lo .5362 05 a 23 .8593 S .5 :8 o. 362:. 2.5 n < 3 .m.mlaal1l_ sec ._ came 26 a space. v >> < A \ \ scuba..— _5=oE=o.._>em _\\ \/ 29 illustrate the theory of self-care. In the model, the figure on the right is named self-care agent, when self-care is ’for oneself’ as represented by the curved arrow labeled ’A’ directed back toward the self-care agent. The figure on the right is named dependent care agent, when self-care is ’given by oneself’ to another, as represented by the straight portion of arrow ’A’ directed to the recipient of care on the left. The environmental factor and solid arrow labeled ’8’ represent care directed to the regulation of environmental factors by the dependent or self-care agent (Orem, 1985). Regulated or unregulated environmental factors also impact the recipient of care and this is modeled by the perforated arrow labeled ’8’. The theory of self~care is applicable to Alzheimer’s Disease as Orem (1985) notes. ”The aged person requires total care or assistance, whenever declining physical and mental abilities limit. the selection or performance of self-care actions" (p. 84). Orem (1985) explains self-care as a practical response to an experienced demand to attend to oneself or a dependent other. Caregivers appear to disregard their own self-care demand, in an effort to maintain the self-care demand of a dependent other. Research supports the finding that some caregivers experience a decrease in health status as a result of caregiving demands (Barnes et al. 1981; George and Gwyther, 1986; Haley, 1986; Pratt et al. 1987). As defined by Orem (1985), ”self-care is the practice of activities that individuals initiate and perform on their own behalf in maintaining life, health, and well-being” (p. 84). 30 According to Orem 0985L self-care has purpose and the outcomes to be achieved through self-care are termed, self-care requisites. Three types of self-care requisites are identified by Orem (1985): universal, developmental and health deviation. In this study, universal self-care is the self-care requisite of interest, and is described as: . common to all human beings during all stages of the life cycle, adjusted to age, developmental state, environment and other factors. Universal self-care is associated with life processes, with the maintenance of the integrity of human structure and functioning, and with general well-being. (Orem, 1985, p. 90) Effectively meeting the universal self-care requisites of each persorn is part of the goal in the primary prevention of disease and ill health (Orem, 1985). Eight universal self-care requfifites are outHned by Orem U985» 1. The maintenance of a sufficient intake of a1r. 2. The maintenance of a sufficient intake of water. 3. The maintenance of a sufficient intake of food. ‘ 4. The provision of care associated with elimination processes and excrements. 5. The maintenance of a balance between activity and rest. 6. The maintenance of a balance between solitude and social interaction. 7. The prevention of hazards to human life, human functioning, and human well-being. 8. The promotion of human functioning and development within social groups in accord with human potential, known human limitations, and the human desire to be normal. Normalcy is used in the sense of that which is in accord with the genetic and constitutional characteristics and the talents of individuals. (p. 90-91) 31 Self-care practices performed to fulffll the universal self-care requisite, are judged therapeutic to the degree that they contribute to the ftulowing results. 1. Support of life processes and promotion of normal functioning. 2. Maintenance of normal growth, development and maturation. 3. Prevention, control or cure of disease processes and injuries. 4. Prevention of or compensation for disability. 5. Promotion of well-being. (Orem, 1985, p. 89) Orenfis U985) theory of self-care, provides a theoretical model for the phenomena of self-care and dependent care (caregivingh In the fcfllowing section, Pender%:(1987) health promotion model is presented. Pender%;(1987) health promotion model outfines concepts proposed to descmibe the determinants of health-promoting behaviors and their interrelationships. Pender’s Health Promotion Model Pender U987) makes a clear disthkfijon between health protection and health promotion. Pender (1987) defines health protection as, ”decreasing the probability of experiencing illness by active protection of the body against pathological stressors or detection of fllness in the asymptomatic stage" q» 57L Conversely, health promotion is defined by Pender (1987) as, ”movement toward a pmmfitively valenced state of enhanced health and well-being, through self-actualization and expression of human potential” (p. 57). Pender (1987) identifies the source of motivation as a.cfistinguishing factor between health promotion 32 and health protection. In health protection, the source of motivation is the threat or presence of illness or disease. The source of motivation in health promotion includes: desire for growth, expression of human potential, and quality of life (Pender, 1987). Self-care is defined by Pender (1987) as, "actions directed toward minimizing threats to personal health, self-nurturance, self-improvement and personal growth” (p. 185). From this definition, self-care may be construed to be both health protective and health promotive. Pender (1987) offers a lengthy discussion of self-care without specifying self-care as health protective or health promotive. Self-care is also not a concept in Pender’s (1987) health promotion model. Nevertheless, for the purpose of this study, the definition of caregiver self-care is proposed to be representative of Pender’s (1987) concept, ”likelihood of engaging in health promoting behaviors" (p. 58). Therefore, self-care practices are identified (for the purpose of this study) as synonymous with Pender’s (1987) concept, health promoting behaviors, outlined in the health promotion model. Pender’s (1987) health promotion model, is presented in Figure 2. The model is derived from social learning theory and structurally similar to the health belief model. Structural organization is where the similarity ends, as Pender (1987) emphasizes; ”The health belief model is appropriate as a paradigm for health-protecting or preventive behavior, but clearly is inappropriate as a paradigm for health promoting behavior" (p. 44). The inappropriate nature of the health belief model as a 33 COGNITIVE - PERCEPTUAL MODIFYING FACTORS PARTICIPATION IN FACTORS HEALTH-PROMOTING BEHAVIOR , I , | WM H [W........] rPerceived control of health ,- l Biologic characteristics Perceived self-efficacy F- [ luapersonnl influences I [ Definition of health — I Situational factors I . I - - Likelihood of engaging in ‘ [ Perceived health emu: @— I Behavioral factors I >4 health- . behaviors d canoe)! health-promoting behavior: l Perceived benefits of L—I , Cues toection [ Perceived barrier: to +- beelth-promoting behaviors Health Promotion Model Figmc 2. Ponder, 1987, p. 58 34 paradigm for health promotion is based on Penderkscflaim that, "The negatively valanced states of filness and disease, whfle relevant to motivation for health-protecfiing (or preventive) behavior, appear to have little, if any, motivational significance for health-promoting behavior” q» 57L Instead, the motivation for health-promotive behaviors stem from: desire for growth, need to express human potential, and concern for quality of life. Penderks (1987) health promotion model is relatively new, and lacks thorough testing to determine how accurately the model explains or predicts specdfh: health promoting behaviors or life style patterns. Acknowledging the lack of research, Pender (1987) notes the model does meet a major criterna of theoretical models,'fit is consistent with knowledge to date, yet remains flexflfle and subject to change as new knowledge is generated"(p. 58-59L one research project based on Pendefls health promotnmj model has been reported on in the Hterature Ukflker, Sechrist, Pender,1987k A review of the aforementboned study is provided in Chapter I”. Clearly, as emmfirical evidence regarding the determinants of health promoting behaviors becomes avaikflfle, modifications in Pender’s (1987) model may be necessary. The health promotion model is shown in Figure 2. The model is structurally organized into four areas: cognitive-perceptual factors, modifying factors, cues to action, and participation in health promoting behavior. There are seven cognitive-perceptual factors ( importance of health, perceived control of health, perceived self-efficacy, definition of health, perceived health status, perceived benefits of health promoting behavior, and 35 perceived barriers to health promoting behavior) which represent the primary motivational mechanisms for initiating and maintaining health promoting actions (Pender, 1987). The definitions of each of these seven factors is not presented, however, each factor is proposed to exert a direct influence on the likelihood of an individual to engage in health promoting actions (Pender, 1987). The area titled modifying factors, includes five factors proposed to exert an influence on health promoting behaviors indirectly. These five modifying factors (demographic characteristics. biologic characteristics, interpersonal influences, situational factors, and behavioral factors) exercise an effect acting via the cognitive-perceptual mechanisms, which directly affect the individuals likelihood of engaging in health promoting behaviors (Pender 1987). Definition for the five modifying factors are not provided here. However, in the following section, each modifying factor is defined within the conceptual framework developed for the current study. Cues to action is the third area in the model proposed to influence health promoting behaviors. Cues to action include internal or environmental tips or hints which inspire or persuade an individual to initiate or continue a particular health promoting behavior (Pender, 1987). Examples of cues to action may include: feeling good, personal health concerns, social or peer pressure, mass media information. Pender (1987) notes, ”the intensity of the cues needed to trigger action will depend I on the level of readiness of the individual to engage in health promoting activity" (p. 69). 36 Likelihood of engaging in health promoting behaviors is the final area outlined in Pender’s (1987) health promotion model. As mentioned previously, health promoting behaviors are expressions of an individual’s actualizing tendencies. Examples of health promoting behaviors outlined by Pender (1987) include: ”physical exercise, nutritional eating practices, development of social support, and use of relaxation of stress management techniques" (p. 59). As modeled in figure 2, the likelihood of an individual engaging in health promoting behavior is influenced directly by cognitive-perceptual factors and indirectly by modifying factors. Cues to action represent another source of influences shaping a person’s likelihood of engaging in health-promoting behaviors. A preliminary presentation and discussion of Orem’s (1985) theory of self-care and Pender’s (1987) health promotion model has preceded. The next section outlines the conceptual framework of the present study, as developed from the aforementioned work of Orem (1985) and Pender (1987). The model concepts are defined and linked to the research variables. Conceptual Framework The conceptual framework developed for the research study is depicted in Figure 3. The study framework represents a "blending” of concepts from the Orem (1985) and Pender (1987) models, to achieve a theoretical modeling of caregiver self-care behavior within the context of caregiving. A description of the conceptual framework is given, followed by definitions of the 37 concepts and a review of study variables used to represent the theoretical concepts. Description of the Conceptual Framework The conceptual model is bordered by two generic (no gender) stick figures. The figure on the right represents the caregiver, and the figure on the left, the Alzheimer patient. A forked arrow labeled ’A’ originates from the caregiver, with one fork directed toward the Alzheimer patient and the other fork curving back toward the caregiver. Arrow ’A’ represents self-care provided to the Alzheimer patient by the caregiver (straight arrow), and the caregiver’s own self-care demand (curved arrow). The curved portion of arrow ’A’ is perforated to represent permeability and openness to environmental effects including the Alzheimer patient. Within the perforated curve of arrow ’A’, is a modified version of Pender’s (1987) health promotion model, depicting factors hypothesized to influence caregiver self-care in this investigation. According to the model in Figure 3, seven modifying factors exert an influence on the caregiver’s participation in self-care behavior. The seven modifying factors include: demographic characteristics, biologic characteristic, psychological characteristic, situational factor, interpersonal influence, behavioral support, and perceived health status (caregiver). Referring back to Pender’s (1987) health promotion model in Figure 2, it is evident that the model designed for the 38 8339 63m 2: 2 m_ocoE Cancun Ea EEO 60:60:. 05 Lo cos-sew“? .m PEEK .538. £8 8 k. =8 3 3:2... £5 :3...— 861i? I I II I d I I r a v hireu < .51.. 9.5.2: I, set \ r s! s a a— s a v s .25..- 28.3 a. 511:: ESL—en beg \ 'I 4"“~ I ~..—- 39 current study includes no cognitive perceptual factors or cues to action. Instead, caregiver self-care is modeled as a result of the combined influence of the designated modifying factors. The interaction of the nunfifying factors and caregiver self-care is depicted as occurring within the curve of arrow ’A’ in Figure 3. However, as mentioned earlier, arrow ’A’ is perforated to represent a permeable boundary between the concepts within the curve and the outside environment. Environmental factors (other than environmentally oriented concepts listed as modifying factors) are not addressed in an effort to limit the scope of this research. The influence of the Alzheimer patient is also not specifically addressed in this study. Eliminating Alzheimer patient factors as possible predictors of caregiver self-care was done to limit the variables in the study. Nevertheless, in two separate studies, Alzheimer patient factors such as inappropriate behavior, were found to have no association with caregiver perceived burden (Winogrond et al. 1987; Zarit et al. 1980). What effect specific Alzheimer patient factors have on caregiver self-care practices remains unknown. Conceptual Definitions Caregiver Self-care As modeled in Figure 3, caregiver self-care is the theoretical concept being described or predicted. Conceptually, self-care includes much more than the ability to carry out activities of daily living. Self-care is both an ongoing activity 40 and a competence to be developed (Pender, 1987). ”The development and operability of self-care is continuously shaped by genetic and constitutional factors as well as by culture, life experiences, and health status (Orem, 1985, p. 34). In this study, caregiving is suspected to be an additional factor effecting the development and operability of a caregiver’s self-care. For the caregiver, self-care must be interspersed among other activities of daily living and demands of caregiving. Self-care is conceptualized to have both form and content. "The form of self-care is that of deliberate action and its phases. The content of self-care is composed of: the purpose to which self-care is directed, the need for self-care, and courses of action that are effective in meeting the self-care need” (Orem, 1985, p. 106). This research investigation is a contribution to discovering the components of caregiver self-care as conceptualized above. Pender (1987) focuses self-care for older adults on maximizing independence, vigor, and life satisfaction. Many benefits of self-care in older adults are reported by Pender (1987), ”physical exercise to maintain or increase cardiac and pulmonary functioning, weight control to enhance mobility. exercise to enhance self-esteem and decrease depression and anxiety” (Pender, 1987, p. 189). Though untested, the benefits of self-care for older adults in a caregiving role may prove to be dramatic in supporting and maintaining the patient/caregiver relationship and environment. 41 As defined in Chapter One, caregiver self-care involves generic activities performed deliberately by caregivers in the areas of: nutrition, disease prevention, exercise, stress reduction and relaxation, for the purpose of achieving or maintaining good health. Engaging in self-care to enhance health and well-being may require old patterns of behavior be extinguished and new patterns of behavior learned (Orem, 1985). Adjusting successfully to the caregiving role may also require that caregivers learn new behaviors, ideally, health promoting ones. Demographic Characteristics Demographic characteristics, is the first. of seven concepts identified as ’modifying factors’ in Figure 3. The order of concepts labeled ’modifying factors’ is arbitrary and not representative of their contribution in influencing caregiver self-care. As defined for. this study, demographic characteristics are parameters of the study sample proposed within the model as effecting patterns in the caregivers self-care. In regard to demographic variables and their impact on health promoting behavior, Pender (1987) notes, ”The extent to which demographic characteristics influence participation in health behavior and the similarities and differences between demographic influences on health protecting versus health promoting behavior need to be determined" (p. 66). In a study on investigating strain among caregivers, Cantor (1983) warns, "homogenization of caregiver demographics such as: sex, age, 42 health, and work status, has resulted in obscuring differences among groups of caregivers and the types of stress each group experiences in the process of giving assistance" “L 597x It is particularly salient to investigate demographics in the research of caregiver self-care. The Lnfique situation of each caregiver must be evaluated to develop an appropriate and effective program to hfitiate or support caregiver self-care behavior. Biologic Characteristics In the health promotion modeh Pender U987)ckufines the concept,tfiologic characteristics as, " a number of tfiological factors found to be related to exercise adherence" Um 67L Pender U987)<fites the research based, inverse redationshnm between total body weight and exercise program adherence. That is, as total body weight increases, exercise program adherence decreases. As a concept in the framework developed for this study, tfiologic characteristics represent an objective meaSLute of the caregivers health. Due to a lack of prior research, the concept, biologic characteristics, is included in this model on conjecture that the health (objective measure) of a caregiver may influence the caregiver’s level of self-care. Lhflike self-care, health has been used previously as a variable in studying the affect of caregiving on caregivers. Two studies, Pratt et al. (1985) and Pratt et al. (1987) found caregiver burden levels were signfificantly related to caregiver health status. Caregivers judged to be in good health had lower burden scores than those caregivers judged to be in poor health 43 (Pratt et al. 1985). By utilizing an objective measure of caregiver health to represent the concept, lfiologn: characteristics, caregivers in objectively poor health are distinguished from caregivers who are more subjectively concerned about their healUm The latter group of caregivers may tend to focus on medical probhmns as one of the few ways of receiving a sanctioned relief from caregiving responsibilities (Haley, 1986). Psychological Characteristics Pender’s (1987) original health promotion model, pictured in Figure 2, does not include the concept, psychological characteristics, as a nmmfifying factor. In altering Fenders; model for the purpose this study, an addfljonal modfiwdng factor, psychological characteristics, is added as pfictured in Figure 3. Conceptually, psychological characteristics represent caregiver mental heaPUn expressed in this study as a measure of caregiver depression. Depression is common among caregivers. Rabins et al. (1983) questioned the pmimary caregivers of a group of demented patients and found 87% reported chronic fatigue, anger, and depression. Haley (1986) investigated the occurrence of depression in Alzheimer caregivers and found, "Caregivers who subjectively report that patient behavior problems and disabffity are stressful to them , and who report little confidence in their ability to handle these problems, appear significantly more depressed. These measures of caregivers appraisals are more 44 consistently related to caregiver depression than life satisfaction or health" (p. 28). There is a lack of research exploring any possible correlation between caregiver depression and caregiver self-care. It is the premise in this study that caregiver self-care may be effected by the presence or absence of caregiver depression. The rational for including this psychological concept in the model is based on the frequency of reported depression in caregivers and the contention that mental state influences the caregiver’s participation in self-care. Situational Factor In Pender’s (1987) health promotion model, the concept situational factors represents important situational or environmental determinants of health promoting behavior. As Pender (1987) states, ”Individuals may wish to behave in ways that promote health, but environmental constraints prevent access to healthful options" (p. 68). Environmental constraints identified by Pender (1987) include: poor selection of healthful ”fast food”, employers providing no time or access to exercise, vending machines in schools stocked with food low in nutritional value. The concept situational factor, is included in the model for this study as outlined in Figure 3. Situational factor is defined in this model as a measure of the impact caregiving has on the caregiver’s normal, daily routine. The impact of caregiving on the caregiver’s schedule includes measures of: the amount of care required, the time involved, and the elimination 45 of other caregiver roles as a result of caregiving. The degree of interruption caregiving produces in the caregiver’s normal schedule is hypothesized to have an affect on the caregivers participation in self-care. No previous research was found in this area. Nevertheless, it is logical to anticipate that unpredictable caregiving duties may impede the caregiver’s efforts to perform consistent self-care activities. Interpersonal Influences In the health promotion model, (Pender, 1987) interpersonal factors proposed to influence health-promoting behaviors include: ”expectations of significant others, family patterns of health care, and interactions with health professionals" (p. 67). These interpersonal influences receive support from research findings regarding their impact on health behavior (Pender, 1987). As diagrammed in the conceptual model of this study, interpersonal influences is proposed as a modifying factor of caregiver self-care. In this study, interpersonal influences is defined as a measure of the caregiver’s social interaction: assessed by evaluating the nature and frequency of contacts caregivers have with others in their environment (Given and Collins, 1987). As a concept, interpersonal influences may be thought of as one arm of the larger construct, social support. Cobb (1976) defines social support as, ”the information leading an individual to believe that he or she is cared for and loved, esteemed, and a member of a network of mutual obligations" (p. 300). Previous studies have found social support to be a mediator of caregiver 46 burden (Fengler and Goodrich, 1979; Gilhooly, 1984; Morycz, 1985; Zarit et al. 1980). Recent studies have investigated proposed elements of social support in an effort to identify what impact the components of this larger construct have on caregiver well-being. Scott, Roberto and Hutton (1986) examined the instrumental and social emotional support provided by families to the primary caregivers of Alzheimer’s patients. The types of assistance from family that were most appreciated by cargivers included: ". . . visits, and having persons stay with the patient so that the caregiver could take a trip, rest, run errand, or get out of the house for social activities” (Scott et al. 1986, p. 348). In regard to caregiver social networks, interpersonal influences refer to the caregiver’s degree of social isolation or connectedness. Haley (1986) compared Alzheimer caregivers and an age-matched control group and reports: Although there is little evidence that the size of social network and casual contacts is decreased, (as a result of caregiving) caregivers are clearly severely limited in activity. Activity with friends appears to be more strongly affected than activities with other family members. Few caregivers are able to take time away from their patient for even a brief vacation. (Haley, 1986, p. 23) The loss of interpersonal transactions can lead to role constriction and eventual role fatigue (Goldstein et al. 1981). Data from a study by Goldstein et al. (1981) indicates, ”when virtually all the individual’s activities center around a single role (caretaking) and interpersonal transactions are primarily with one other person (the patient), the opportunities to obtain 47 role relief (i.e., to shift to other roles and to interact with a variety of other persons) are minimal, and results in a kind of ’cabin fever’ or role fatigue” (p. 26). Clearly the concept interpersonal influences is documented as a mediator of caregiver burden and well-being. What is unknown, and the focus in this study, is the impact interpersonal influences have on caregiver self-care behavior. The lack of prior research to support or refute any correlation between caregiver self-care and interpersonal influences is justification to include the concept in the framework of this study. Behavioral Support The final modifying factor outlined in the conceptual framework of the study (Figure 3) is titled, behavioral support. For the purpose of this research, behavioral support is defined as a measure of instrumental support for the caregiver. determined by assessing the amount of assistance family and friends provide in performing tasks for the caregiver (Given and Collins, 1987). Behavioral support focuses on the degree of tangible assistance, aid, or information, the caregiver receives from friends or family. In the conceptual model of the study, behavioral support is anticipated to influence caregiver self-care behavior indirectly as a modifying factor. No prior research on the relationship between behavioral support and caregiver self-care was found. Nevertheless, behavioral support (as a measure of instrumental support) has been utilized to investigate other dimensions of caregiver well-being. Gilhooly (1984) found caregiver satisfaction 48 with help received from relatives, was significantly correlated with caregiver mental health ratings and morale. Data from two studies by Zarit et al. (1980) and Zarit (1982) support the finding that it is the caregivers perception of support from family and friends rather than the actual amount of support, which modifies the caregiver’s feeling of burden. It is logical to speculate that assistance from family and friends may provide the caregiver greater freedom of time and responsibility. Therefore allowing the caregiver to pursue personal needs and interests, such as self-care. For the purpose of this study an objective measure of behavioral support (amount of assistance from family and friends) is evaluated to determine the effect of behavioral support on caregiver self-care. Perceived Health Status As depicted in Figure 3, perceived health status is the single cognitive perceptual factor (from Pender’s original health promotion model) proposed in the conceptual framework for this study. Perceived health status was incorporated as a modifying factor in this study framework to achieve a better ”fit” of theory and the operationalized study variables. As discussed previously, Pender (1987) outlines seven cognitive-perceptual factors in the original health promotion model. The use of a single cognitive-perceptual factor in this study was not done by choice, but was a constraint of using secondary data. Clearly, the opportunity to include more of Pender’s (1987) original 49 cogmfljve-perceptual factors would strengthen the conceptual framework of the study. The premise of the concepfl. ’perceived health status’ is simple, ”feeling good may be a source of motivation for taking actions that increase personal health stattu¥'(Pender, 1987, p. 64% In a study done on non-caregivers, 45-69 years of age, Palmore and Luikart (1972) found that, "self-rated health correlated more tdghly with er satisfaction than did acthdty level, organizational or social activity, productivity, or career anchorage" UL 78L Other studies done on non-caregiver samples conclude that perceptions of being in good health are repeatedly associated with: performance of health promoting behaviors (Christiansen, 1981); intentions to attain or maintain recommended weight (Fender and Pender, 1986), and increased probability of cordinuing exercise behavior Ufishman, SaHis, Orenstehm 1985L Caregiver perceived health status has been utilized in research pertaining to caregivers also. Pratt et al.(1987‘ comments,’baregivers’rating of their current health status were signfificantly related to patient residence, with caregivers to institutionalized relatives significantly more likely to rate their current health status as ’fair’ or ’poor’” (p. 105). Caregiver burden levels are also reported to be signflficanth/ and inversely related to caregiver health status, as reported by Pratt et aL U985L In a study cfi Adzheimer caregivers and a matched control group, Haley (1986) was unable to determine, ”whether caregivers are in objectively poorer health than the controls, or whether 50 caregivers are more subjectively concerned about their health” (p. 23). Haley (1986) notes a hazard in using, perceived health status, as a concept ”. . . caregivers may tend to focus on medical problems as one of the few ways of receiving a sanctioned relief from caregiving responsibilities" (p. 24). The link between perceived health status and self-care behaviors is confirmed in research on non-caregiving samples. This same link (perceived health status and self-care behavior) has not been investigated among caregivers; furthermore, caregiver perceived health status may be confounded as a result of caregiving (Haley, 1986). For the purpose of this study, caregiver perceived health status is evaluated to determine what effect a caregiver’s perceived health status has on the caregiver’s performance of self-care behaviors. The organization of this study is such that the study variables are introduced and defined in Chapter One; the framework and theoretical concepts presented and defined in Chapter Two, with operational definitions of the study variables presented in Chapter Four. To clarify the relationship of theoretical concepts and study variables, each concept and its corresponding study variable or variables is briefly outlined in the following table, Table 2.1. Table 2.1 551 Relatlggship of Theoretical Concepts and Study Variables. Theoretical Concept caregiver self-care demographic characteristics biologic characteristic psychological characteristic situational factor interpersonal Influence behavioral support perceived health status Study Variable caregiver sell-care practices/behaviors caregiver: age, sex, Iarltal status, duration of care- giving, education, eoploy- lent, Ialillal relation to patient caregiver health caregiver depression impact of caregiving on caregiver’s schedule social Interaction of caregiver alount of assistance from family/friends caregiver perceived health status Orenfls Theory of Nursing Systems As stated earlier, Orem’s (1985) theory of nursing systems is used to support the theory/practice. The importance link between this research and nursing of combining theory with practice is highlighted by Weekes (1986): . it is suggested that nursing science approach observation and theory as a dialectic unity of opposites involving (1) clinical observations evaluated in present knowledge perspective of clinical completed studies evaluated in approach allows, (2!) £13 vve II as corrects, light of available theory (theory) evaluated from the observations, light of both. and (3) This for the fact 52 that observation is theory laden. In addition, it clearly explicates the relationship between theory and observation; that is, theory drives observation, and observational findings shape the development of theory, and the two form the core of an observational practice discipline. (p. 19) In short, the clinical nursing application of the study is guided by the theory of nursing systems as developed by Orem (1985). As stated earlier, Orem’s (1985) general theory of nursing is constituted from three related theoretical constructs: ”the theory of self-care deficit, the theory of self-care, and the theory of nursing system(s)" (p. 34). Drem’s (1985) theory of self-care was discussed earlier in this chapter. Orem’s (1985) theory of nursing systems) is presented here to stress the relevance of this research to nursing practice. Explaining how persons (caregivers) can be helped through nursing, Orem (1985) proposes a theory in which, "the product of nursing practice is a nursing system(s) through which the capability of patients to engage in self-care is regulated and self-care is continuously produced” (p. 34). According to Orem (1985), ”nursing system can be used in a general way to stand for all the actions and interactions of nurses and patients in nursing practice situations" (p. 148). In concrete terms, the elements of nursing systems are: ”the persons who occupy the position of nurse and the status of nurse’s patient and the events that transpire between them” (Orem, 1985, p. 148). 53 Within the theory of nursing system(s), Orem proposes a typology of nursing systems: 1. wholly compensatory nursing systems 2. partly compensatory nursing systems 3. supportive-educative nursing systems (Orem, 1985, p. 152) Each system is explained by Orem (1985) to be a result of the question: ”Who can or should perform those self-care actions that require movement in space and controlled manipulation?" (p. 152). If the answer is the nurse, the system is called wholly compensatory, because of the patient’s total inability to fulfill his or her own self-care requirements. If the answer is the patient can perform some, but not all self-care requisites, the system is termed partly compensatory. If the answer is that the patient can and should perform his or her own self-care, the system is titled supportive-educative. The nursing system of interest in this study is the supportive-educative system. Caregivers are primarily individuals who ”can and should" perform their own self—care activities. In a supportive-educative nursing system, the nurses role is not to do for the patient. Instead, it is the nurse’s responsibility to teach, guide, support, and assist the patient in achieving his or her therapeutic self-care demand (Orem, 1985). As Orem (1985) notes, "this is the only system (supportive-educative) where a patient’s requirements for help are confined to decision making, behavior control, and acquiring knowledge and skills” (p. 156). 54 By definition, it appears the supportive-educative nursing system is most appropriate for assisting caregivers with their self-care requisites. Nevertheless, the nurse must recognize Orem’s (1985) nursing systems as dynamic and select the system, or sequential combination of systems, with the optimum effect in achieving the caregiver’s therapeutic self-care demand. For example, suppose an elderly female caregiver suffers a fall which results in a hip fracture. The caregiver will require a wholly compensatory nursing system while hospitalized and initially post-op due to the immobilized hip. A partly compensatory nursing system will evolve as the caregiver begins physical therapy to regain motion and weight bearing of the repaired hip. Once released from the hospital, the caregiver can benefit from a supportive-educative nursing system. The nurse can use the supportive-educative system to counsel the caregiver on ways to maximize her recovery and health within the context of caregiving. Such counseling may include topics such as: nutrition, exercise, weight control, time and resource management, and stress reduction. The caregiver may require teaching, support or consultation in one or all of the above areas to achieve her personal therapeutic self-care demand. Professional nurses in primary health care settings are in an ideal position to identify the self-care needs of caregivers. Caregivers often accompany the patient in their charge to health care visits. The astute clinician can use this time as an opportunity to assess the caregivers level of self-care. Once 55 an assessment is made, the nurse can negotiate with the caregiver to determine what nursing system or systems wiH best facflitate the desired self-care outcome. Summary The content of Chapter Two has included: a discussion of the conceptual framework of the study, defhfitions of framework concepts, and an explanation of the association between this research and nursing theory/practice. The focus of Chapter Three is a comprehensive review of the literature pertinent to the subject and purpose of this study. CHAPTER HI Review of the Literature Overview Relevant. literature pertaining to the framework concepts and associated study variable(s) is presented in this chapter. The purpose of this chapter is to review research findings and narrative articles involving efforts to analyze caregiver self-care practices and variables influencing caregiver self-care. Because the focus of this study is Alzheimer caregiver-5’ self-care, an effort is made to review literature utilizing samples of caregivers of Alzheimer patients. Nevertheless, additional articles and data from other caregiving populations are used as needed to review the concepts and variables outlined in this study. The chapter is divided into sections. Each section is labeled corresponding to the study concepts outlined in Chapter Two. Therefore, Chapter Three is divided into the following sections: caregiver self-care, demographic characteristics, biologic characteristic, perceived health status, psychological characteristic, situational factor, interpersonal influence and behavioral support. Within each section, research and literature specific to the study concept, and associated study variable(s) is reviewed. Preceding the aforementioned sections is a brief review of Pender’s (1987) health promotion model. Following the review of study concepts is a synopsis of the 'Alzheimer caregiver literature from a nursing perspective. The chapter 56 57 ends with a brief discussion of the ”status” of this study .in relation to prior Alzheimer caregiver research. Fender’s Health Promotion Model As presented in Chapter Two, a modified version of Pender’s (1987) health promotion model represents the ’core’ of the conceptual framework developed for this study. Dovetailing with the purpose of the study, Pender’s (1987) health promotion model functions to: 1. Introduce order among concepts that may explain the occurrence of health-promoting behavior. 2. Provide for the generation of hypotheses to be tested empirically. 3. Integrate disconnected research findings into a coherent pattern. (Pender, 1987, p.57) Pender’s health promotion model is new, (revised in 1987) and its empirical adequacy and testability have been reported only once in the literature (Walker, et al. 1987). In an effort to develop a valid and reliable instrument to measure health-promoting life‘style, Walker, et al. (1987) constructed the Health-Promoting Life-sytle Profile (HPLP) based on the theory of Pender’s health promotion model. Walker et al. (1987) evaluated the HPLP on a sample of well adults using item analysis, factor analysis, and reliability measures. Although ten separate but related dimensions originally composed the HPLP, only six dimensions were supported by the factor analysis and reliability estimates (Walker, et al. 1987). Further evaluation of the HPLP with different populations appears warranted. Nevertheless, the 58 HPLP, ”appears to have sufficient validity and reliability for use by researchers who wish to describe the health-promoting component of lifestyle in various populations, to explore correlates or determinants of health promoting lifestyle, or to measure changes in health promoting lifestyle as a result of interventions” (Walker, et al. 1987, p. 80). Fender’s (1987) health promotion model has not been utilized with a sample of caregivers (Alzheimer’s or otherwise). Furthermore, the results obtained in this study, using a modified version of Pender’s (1987) model, cannot be construed as representative of results that may be obtained using Pender’s (1987) original health promotion model with a caregiving population. Just as Pender’s (1987) model lacks thorough empirical testing, the conceptual model developed for this study lacks testing. Nevertheless, research and literature pertinent to the concepts in the study framework can be reviewed to support or challenge the validity of the proposed model. The first study concept reviewed is, caregiver self-care. Caregiver Self-Care In this section, literature pertinent to the concept ’caregiver self-care’ is presented. To review briefly, ’caregiver self-care’ is the ”correlational" concept in the conceptual model. ’Caregiver self-care practices/behaviors’ is the single dependent variable of the study, and in the analysis the dependent 59 variable (caregiver self-care) is regressed on the various independent variables. The concept ’caregiver self-care’ is pivotal to the uniqueness of the current study. Among the literature reviewed for this study, no prior research was found in which Alzheimer caregivers’ self-care was specifically analyzed or assessed within the context of caregiving. The majority of research on Alzheimer caregivers is devoted to the definition and measure of the construct ’burden’ (Cantor, 1983; Chenoweth and Spencer, 1986; George and Gwyther, 1984; Jenkins et al. 1980; Montgomery et al. 1985; Poulshock and Deimling, 1984; Zarit et al. 1980) and how caregivers cope with the impact of burden (Barnes et al. 1981: Colerick and George, 1986; Gilhooly, 1984; Johnson and Catalano, 1983; Kahan et al. 1985; Morycz, 1985; Pratt et al. 1985; Pratt et al. 1987). Admittedly, some components of caregiver burden defined in the literature may also be defined as components of caregiver self-care (i.e., caregiver: amount of sleep, social activities, leisure activities, use of psychotropic drugs). Nevertheless, the objective of this study was not to examine or define the negative impact of caregiving (burden) on Alzheimer’s caregivers, but to investigate what relationship specific independent variables have with the caregivers’ reported self-care practices. Therefore, the caveat is made, that, much of the literature cited in this review involves studies utilizing concepts or variable(s) outlined in this study, with Alzheimer caregiver variables other than self-care. For example, the study concept 60 ’demographics’ includes the study variables of caregiver: age, sex, marital status, education, employment, relation to patient, duration of caregiving. Optimally, the literature review of the concept ’demographics’ would include studies analyzing the demographic variables (caregiver age, sex, etc.) and Alzheimer caregivers’ self-care practices. Unfortunately, studies of Alzheimer caregivers’ self-care practices were not found. Therefore, the demographic variables must be reviewed via research completed on Alzheimer caregivers, involving variables other than caregiver self-care. Having clarified the aforementioned caveat for this literature review, the literature review of the concept ’caregiver self-care’ continues. It is a fact that women comprise a majority of the older population and that knowledge about the health and self-care practices of older women is currently inadequate (McElmurry and LiBrizzi, 1986). Statistics from demographic studies support the hypothesis that men are biologically weaker than women, experiencing higher mortality rates from the moment of conception (Cowling and Campbell, 1988). The current estimated life expectancy for males is 71.8 years, opposed to a life expectancy of 81 years for females (Carnerali and Patrick, 1979). Acknowledging the gender differences in mortality statistics, a solid base of empirical research also exists, indicating a variety of behavioral factors that significantly influence morbidity and mortality among both genders (Belloc and Breslow, 1972; Metzner, Carmen, and House, 1983; Reed, 1983; Wiley and Camacho, 1980). Nearly ten years ago, (1979) the Surgeon General 61 of the. United States issued a report estimating that as much as half of the country’s mortality may be due to unhealthy behavior (U.S. DHEW, 1979). As evidence accumulates concerning the impact of personal behavior on health, the quest to understand the determinants of health behaviors (self-care) intensifies (Hubbard et al. 1984; Pender and Pender, 1986). In an effort to determine the use and effectiveness of coping strategies in reducing Alzheimer caregiver stress, Scott et al. (1987) analyzed three coping strategies (caregiver: recreational contacts, sleep, and maintenance of own health) which also match the definition of self-care utilized in this study. None of the three aforementioned strategies were reported as commonly used to reduce stress. Regarding effectiveness, a disruption in sleeping patterns, (resulting in less sleep) and a change in recreational contacts, (resulting in fewer contacts) both contributed to increased caregiver stress. George and Gwyther (1986) examined four dimensions of Alzheimer caregiver well-being: physical health, mental health, financial resources and social participation. Results of the George and Gwyther (1986) study indicate that relative to random community samples, caregivers are most likely to experience problems with mental health and social participation. The questions used to assess mental health and social participation in the George and Gwyther (1986) study, are similar to questions concerning self-care (i.e., stress symptoms?, use of psychotropic drugs?, time spent in hobbies or relaxing?, visits or phone contacts with family/friends?). It is important to note that in 82 both the Scott et al. (1987) and George and Gwyther (1986) studies, had the caregivers received support in the self-care areas identified above, a more desirable outcome may have been observed (i.e., less stress and better well-being). Gwyther and Matteson (1983) report: Caregivers state their major coping stresses as their own fatigue and lack of time for themselves and their other role responsibilities. They (the caregivers) often respond best to a professional "prescription" for respite. . . They (the caregivers) need a ”prescription" to take care of themselves in order to continue their availability to the Alzheimer patient. (p. 95, 110) The quote above addresses the need for caregiver self-care behavior, and offers a technique for giving the caregiver "permission" to pursue self-care activities. A logical rational for this investigation of Alzheimer’s caregivers’ self-care, is the limited amount of research currently available. More compelling, are the results of existing studies providing empirical evidence of abuses and/or deficits in caregiver self-care or health status as a product of caregiving (Colerick and George, 1986; George and Gwyther, 1988; Haley, 1986; Scott et al., 1987). This study is designed to expand and improve on previous research by: -investigating independent variables alluded to in the literature as items related to caregiver self-care -utilizing a homogeneous sample in regard. to patient/caregiver must be related and reside in the same place -sample involves only Alzheimer’s caregivers 63 The focus of this study is aimed at analyzing caregiver self-care practices (not caregiver health status) and how various independent variables correlate with caregiver self-care. Because there appear to be no prior research studies similar to this one in the current literature. The study results can be used in a preliminary fashion to gain some insight into the issue of caregiver self-care. Demographic Characteristics In this section, research and literature pertaining to the concept ’demographic characteristics’ is presented. Study variables associated with the concept ’demographic characteristics’ include caregiver: relation to patient, marital status, age, sex, employment, education, and duration of caregiving. The status of the concept. ’demographic characteristics’ is accurately assessed by Gwyther and George (1986) who comment, "We are only now at the point that the importance of heterogeneity among caregivers is becoming recognized” (p. 245). Several consequential sources of variation in the Alzheimer caregiver population are beginning to receive attention in the literature. Worcester and Quayhagen (1983) utilized demographic variables in an effort to predict the level of caregiver satisfaction in providing care. The majority of carers in the Worcester and Quayhagen study were caring for physically rather than cognitively impaired patients. Nevertheless, the following 64 demographic data emerged from the study: - The older the caregiver, the more satisfaction reported in the caregiving role. (accounted for by the fact that older caregivers may be more comfortable in the caregiver role than younger caregivers) - The longer the caregiving duration, the less satisfaction reported in caregiving. (accounted for by the likelihood that as the duration of caregiving increases, the age and problems of the client increase, making caregiving more difficult) - Lower income carers were more satisfied in the caregiving role than carers of the middle class. (supported in other studies that show lower socioeconomic classes view the care and responsibility of relatives as less burdensome than middle classes) (Worcester and Quayhagen, 1983, p. 67) Each of the demographic variables outlined in the study will be reviewed separately beginning with, ’the relationship of the caregiver to the Alzheimer patient’. The demographic variable ’caregiver marital status’ will be subsumed in the review of the first variable, ’the relationship of the caregiver to the Alzheimer patient’. The relationship of the caregiver to the Alzheimer patient Cantor (1983) reported the closer the caregiver/patient bond, the greater the amount of strain on the caregiver, with spouses being at highest risk. Gilhooly (1984) found caregiver/patient relationship was significantly related to caregiver mental health --the greater the ”distance” in the relationship, the better the caregiver’s mental health. Gilhooly (1984) also investigated caregiver morale, but found no correlation between patient/caregiver relationship and caregiver morale. 65 In a study by George and Gwyther (1988) it was reported that spousal caregivers of Alzheimer patients exhibit: low levels of well-being, poor self-rated health, and significantly lower incomes than adult child and other caregivers. The fourth area analyzed in the George and Gwyther (1988) study included, social activity. Spouse and adult child caregivers were identical in this area, (social activity) with significantly lower values than other (non-family) caregivers (George and Gwyther, 1988). In contrast, Colerick and George (1988) found spousal caregivers report lower use of stress-reducing drugs and high levels of life satisfaction, compared to adult child caregivers. Colerick and George (1988) explain this finding as a result of spousal caregivers accepting the role and realizing that the caregiver role has, and continues to occupy a central role in the spouse’s life. Spousal caregivers are known to devote greater amounts of time to caregiving, (Caserta et al. 1987) and are the least likely caregivers to relinquish caregiving duties to professionals, even at great cost to their own health and well-being (Pratt et al. 1987). The second most common Alzheimer caregiver is a female adult child or daughter-in-law (Shanas, 1979). Daughters or daughters-in-law assuming the caregiving role, often experience high levels of stress due to their other role responsibilities as mothers, wives, and employees (Colerick and George, 1988). The adult child caregiver is reported to have an income above the average of other caregivers and therefore is more likely and 88 able to exercise the option of institutionafization, should caregiving become overwhelming (Colerick and George, 1988). A study by Zarit et al. (1980) serves to highlight the lack of consistent fhufings in regard to the effect of the caregiver/patient relationship. Zarit et al. (1980) found no cfifference in the burden perceived by spouses -vs- adult chfld caregivers, even when controHing for the patientkslevel of impairment. 'The lack of consistent fhufings in many areas of leheimer caregiver Hterature may be partiaHy attributed to the lack of consistency in defhfing and operationaltfing constructs such as burden. stress, strah1(JenkhuL Parham, and Jenkhna 1985). Gag-swiries Just as there are statistics to support the statement that ”aging is a womenk:issue",(McElmurry and Lflhfizzt 1988) there are also statistics providing enmfirical evidence that caregiving is a women%; issue (Goodman, 1988L Because of persistent sex-role dfiferences, and greater female er expectancy, women are much more erly than men to assume responsibflity for providing direct care (Brody, 1981; Shanas, 1979; Troll, 1971). The current research available on gender difference and the Alzheimer caregiver is limited, yet informative. In a study of impact of caregiving on caregivers, Gilhooly (1984) reported male caregivers having higher morale than female caregivers. Gilhooly (1984) offers three possible explanations for the morale gender difference: 67 1. Men in the sample were less emotionally involved with their patients than female caregivers. 2. Men in the sample were more willing to go out of the house, leaving the patient unattended (less social isolation. 3. Men may be less willing to admit distress, even when it is felt. (p. 41) Zarit et al. (1981) found wives to be more burdened and more likely to institutionalize than caregiving husbands. In addition, Morycz (1985) reported that although males were not found to be any less desirous of institutionalizing the Alzheimer patient, strain (perceived by the male caregiver) did not predict the desire to institutionalize for the male caregivers. The aforementioned studies appear to support the contention that male caregivers are more resilient than females, in coping with strain as a consequence of caregiving. The current study will provide insight into gender difference and self-care practices of caregivers. Perhaps some of the positive outcomes observed in male caregivers by previous researchers may be explained by the study variable ’caregiver self-care practices’. Lastly, in the often cited study by Fengler and Goodrich (1979), the morale of wives of elderly disabled men, although overall fairly low, was higher when they perceived their income as adequate and when they were not employed full-time. The degree of disability of the husband was not a factor in differentiating the wife’s morale. Caregiver Age Caregiver age is commonly collected as part of the sample demographics in Alzheimer caregiver studies. Other thana 68 notation of frequency in the ’results’ section, caregiver age has only indirectly received analysis as a variable in the Alzheimer caregiver experience. Cantor’s (1983) study of strain among caregivers, noted age as a function of spouse caregivers ~vs-adult child caregivers. In Cantor’s (1983) work, spousal caregivers were the high risk group due to: increased age, poor health, low income, and an increased potential for isolation and psychological stress (as the husband/wife dyads often reside alone). In contrast, adult child caregivers were: middle aged, married, living with family, working, and had higher incomes (Cantor, 1983). Caregiver age is reported to be a factor in Alzheimer patient institutionalization, with younger, non-spouse, caregivers more likely to relinquish care than older, spouse, caregivers (Colerick and George, 1988). Adult child caregivers may exercise the option of institutionalization more frequently. However, these younger caregivers also report more feeling of guilt, inadequacy, and use of psychotropic drugs, post-institutionalization (Colerick and George, 1988; Pratt et al. 1987). The distress observed in adult child caregivers post-institutionalization, may be a result of the caregivers’ informal social support network dissipating upon institutionalization of the patient (Colerick and George, 1988). Caregiver Education Measures of caregiver education are often collected in the demographic section of Alzheimer caregiver studies. In reviewing the literature for this study, no research was found in which 69 caregiver education received more than a tabulation of frequency in the ’results’ section of the study (Cantor, 198.3; Caserta et al. 1987; Chenoweth and Spencer, 1988; Colerick and George, 1988; George and Gwyther, 1988; Morycz, 1985; Pratt et al. 1985). In the aforementioned studies, the majority of caregivers were high school graduates or above. This level of education may be a function of where the samples were collected (i.e., Alzheimer support groups, ADRDA chapters) and reflect the intellect of persons already seeking additional knowledge about Alzheimer’s disease and its management. It is logical to anticipate that a variable such as ’caregiver education’ may contribute much in a study designed to analyze caregiver self-care. While education or knowledge of self-care practices in no way assures participation, knowledge (of self-care) is a required antecedent. for participation in self-care practices. Caregiver employment Caregiver employment is a variable that has received limited analysis in the caregiver literature. The variable ’caregiver employment’, is also commonly tabulated in caregiver studies, but further analysis of caregiver employment is reported in only a few studies. Colerick and George (1988) found caregiver employment to be a factor in the type of care provided. Continuous, in-home care was more likely when the caregiver was an elderly, unemployed spouse (Colerick and George, 1988). Conversely, institutional care was more likely when the caregiver was an employed 7O daughter (Colerick and George, 1988). Gilhooly (1984) reported employed caregivers of dementia patients have somewhat higher morale and better mental health than unemployed caregivers. Conversely, Fengler and Goodrich (1979) reported the morale of wives of disabled men to be higher when they were not employed full time. The lack of consistent findings in this area may be attributed to different: operational definitions of variables, sample populations, and sample size. Caregiver unemployment is reported to contribute to the development of caregiver ’role fatigue’, a phenomena described by Goldstein et al. (1981). Role constriction and subsequent role fatigue, occurs when an individual’s range of roles is sharply reduced and the individual is restricted (for all practical purposes) to only one role (i.e., caregiving) (Goldstein et al. 1981). Thus, as the caregiver reduces his or her multiple roles in an effort to continue their caregiving duties, they become more at risk for ’role fatigue’. Duration of Caregiving Duration of illness, (Alzheimer’s disease) rather than duration of caregiving, has received more frequent analysis in the caregiver literature. Grad and Sainsbury (1983) found that families caring for elderly patients suffering chronic illnesses exhibited greater burden than those coping with acute illnesses. Similarly, Newbigging (1981) found that duration of dementia was inversely correlated with caregiver morale. ln contradiction to the aforementioned studies, Gilhooly (1984) found that the longer the carer had been giving care, the 71 higher his or her morale and mental health ratings. The results of Gilhooly’s (1984) study are surprising, however, the sample size was small (n=37) and the Gilhooly herself acknowledges the measures used may have been too general and masked the effects of specific features of Alzheimer’s disease. Gilhooly (1984) offers two explanations for the unexpected results: 1. The ’survival effect’ which is evoked by caregivers who divorce themselves from the psychological strain of caregiving to protect their own sense of well-being. 2. The longer the time the caregiver has to learn to cope and adjust, the more likely a positive outcome will prevail. (p. 42) In opposition to the aforementioned studies on duration of caregiving. Machin (1980) found no relationship between years spent caring for an elderly relative and score for caregivers on burden, strain, or life satisfaction scales. The elderly being cared for in Machin’s (1980) study were not specifically identified as Alzheimer patients. In summary, the concept demographic characteristics, represents a ”mixed bag” of research on the study variables of caregiver: relation to patient, marital status, age, sex, employment, education, and duration of caregiving. Each of the demographic variables reviewed merit further research to validate or refute the results of earlier studies. For the purpose of this study, the demographic variables will be combined to represent a ”net” influence or relationship with caregiver self-care. Ideally, each of the demographic variables could be 72 explored for their unique relationship with the dependent variable, caregiver self-care practices. Biologic Characteristic In this section, research and literature pertaining to the concept ’biologic characteristic’ is reviewed. The study variable associated with the concept ’biologic characteristic’ is ’caregiver health’. Caregiver health was defined previously in this work as: the number of chronic diseases or physical problems the caregiver experiences, and the degree to which these diseases or problems negatively impact the caregiver’s life-style. Reports of declining caregiver health as a result of caregiving are frequent in the literature (Charlesworth, Wilkin, and Dune, 1983; Colerick and George, 1988; George and Gwyther, 1988; Haley, 1988; Johnson and Catalano, 1983; Levin, 1983; Pratt et al. 1987; Pratt et al. 1985). Caregiving as a potentially high-stress situation, and the prolonged dependency of the Alzheimer patient, combine to threaten the health status of the primary caregiver (Johnson and Catalano, 1983). Haley’s (1988) measure of Alzheimer caregiver health is closely aligned with the caregiver health variable defined in this study. To compare Alzheimer caregivers’ health with a matched control sample, Haley (1988) utilized the Pennebaker Inventory of Limbic Languidness, (PILL) a 54 item, self-report, inventory of common physical symptoms. In addition to the PILL, Haley (1988) administered the Health Status Questionnaire, (HSQ) to collect a measure of chronic conditions and self-reported health problems 73 among the caregiver sample. Haley (1988) reported caregivers have significantly poorer health than controls on a number of variables. Caregivers rated their health as poorer than controls, and caregivers endorsed more chronic illnesses on the HSQ than did controls (Haley. 1988). Caregivers did not differ from controls on the number of physical symptoms reported via the PILL. Health care utilization, (a variable not being analyzed in this study) was consistently higher for Alzheimer caregivers in the Haley (1986) study. with caregivers reporting a greater number of physician visits and prescription medications, than controls. Haley (1988) notes, "it is not clear from the health data whether caregivers are in objectively poorer health than controls; or whether they (caregivers) are more subjectively concerned about their health" (p. 23). Regardless of the mechanism, the health endpoints of poorer subjective/objective health, and increased health utilization, contribute to the growing "hidden" expenditures that may be attributed to the caregiving experience (Haley, 1988). George and Gwyther (1988) compared Alzheimer caregivers’ health (spouses) to the health of adult child caregivers and other family caregivers, via two measures: 1. number of doctors visits and 2. self-rated health. Results show spousal caregivers report more doctors visits and poorer self-rated health then the other two groups, even when age is statistically controlled (George and Gwyther, 1988). Charlesworth et al. (1983) found that only 9% of the total study sample (not exclusively Alzheimer caregivers) felt that 74 their ill health had been directly caused by their caring responsibilities, and 13% reported that caring had possibly worsened already poor health. The review of the concept ’perceived health status’, is presented next (out-of-order) to preserve the continuity of the health theme in reviewing the literature. Perceived Health Status The concept, ’perceived health status’ is represented in the study by the variable, ’caregiver perceived health status’. As the name implies, caregiver perceived health status is defined as a self-rated health appraisal (excellent, good fair, poor) reported by the caregiver. Perceived health status is a common method of assessing Alzheimer caregiver health in the literature (George and Gwyther, 1988; Haley, 1986: Pratt et al. 1987; Pratt et al. 1985). In the study by George and Gwyther (1988), the Alzheimer caregiver sample was grouped according to caregiver/patient family relation and then values of self-rated health were compared among the different caregiver groups. Spousal caregivers reported significantly poorer perceived health than adult child, or other relative caregivers (George and Gwyther, 1988). Haley (1988) compared primary Alzheimer caregivers to a matched control sample, on the variable of perceived health status, and found caregivers rate their health status poorer than controls. Admittedly, some caregivers may tend to focus on 75 medical problems as one of the few ways of receiving a sanctioned relief from caregiving responsibilities. Nevertheless, Haley (1988) collected additional clinical data documenting that some of the sample caregivers had actually experienced major health problems since the advent of caregiving. Perceived health status was used in the two Pratt et al. studies as a measure of caregiver health. Pratt et al. (1985), focused on identifying coping strategies used by Alzheimer caregivers and the relationship of these strategies to the caregiver’s subjective sense of burden. Caregiver burden levels were found to be inversely related to caregiver perceived health status. Higher perceived health, equals lower burden score (Pratt et al. 1985). The Pratt et al. (1987) study, focused on investigating Alzheimer caregiver health. burden and coping strategies, as a function of patient residence (community dwelling or institutionalized). Again, in this study, caregiver health was measured via the self-rated 4 point scale of excellent, good, fair, and poor. Results show caregiver burden scores inversely related to perceived health status among caregivers to community dwelling patients and institutionalized patients. The higher the caregivers’ perceived health, the lower the burden score (Pratt et al.1987). Caregivers’ health status prior to caregiving was not significantly related to the patient’s residence. However, caregivers’ current health status was significantly related to patient residence, with caregivers to institutionalized patients significantly more likely to rate their 76 current health status as ”fair” or "poor” (Pratt et al. 1987). Caregivers to institutionalized relatives were also significantly more likely to report that caregiving had had a great negative affect upon their health status (Pratt et al. 1987). More importantly, Pratt et al. (1987) found that none of the coping strategies investigated in the 1987 study buffered the negative impact of caregiving upon caregiver physical health status. Use of positive psychological strategies (e.g., confidence, reframing) and social support were not related to the caregivers’ perceived level of current health (Pratt et al. 1987). No studies were found in which caregiver health (objective measure) or caregiver perceived health (subjective measure) were investigated in relation to caregiver self-care practices. Pratt et al. (1987) advises future researchers to further investigate the relationship of coping strategies to caregiver health status because health status is clearly related to the caregiver’s ability to provide continuing care in the community. The advice of Pratt et al. (1987) is equally relevant to the investigation of self-care habits and caregiver health. Psychological Characteristic The concept, ’psychological characteristic’ in this study, corresponds with the study variable, ’caregiver depression’. Research and literature pertinent to the study variable, ’caregiver depression’ are presented in this section. ”For many caregivers, the attempt to provide care for an Alzheimer patient sets in motion a cycle of isolation, 77 self-neglect, sadness, frustration and guilt” (Barnes et al. 1981, p.84). Investigations of the phenomena of caregiver depression represent an attempt to break the aforementioned cycle. One of the earliest study’s of depression among Alzheimer caregivers was by Rabins, Mace and Lucas (1982), who reported 87% of the caregivers in a sample of 55 families reported chronic fatigue, anger, and depression. Goldman and Luchins (1984) presented a descriptive account of three Alzheimer caregivers’, requiring hospitalization due to the stress of caregiving. Goldman and Luchins (1984) noted, "Because we were unable to find previous reports of this particular phenomenon, we felt it worthwhile to describe these cases" (p. 1487). From 1984 to the present, five additional studies were located in the literature, pertaining to caregiver depression (George and Gwyther, 1984; Gilhooly, 1985; Haley, 1988; Kahan et al. 1985; Pagel et al. 1985; Poulshock and Deimling. 1984). Each of the aforementioned researchers approached the topic of caregiver depression in a unique way. Therefore, the articles are reviewed individually. George and Gwyther (1984) investigated cross-sectional data on Alzheimer caregiver well-being, and found the dimensions of mental health and social activity most adversely affected as a result of caregiving. Furthermore, George and Gwyther (1984) report spousal caregivers and other caregivers who reside with the patient report: the highest number of stress symptoms, the lowest ratios of positive to negative affect and the lowest levels of life satisfaction. In the George and Gwyther (1984) study, mental health was measured using three indicators: 3 78 checklist of psychosomatic stress symptoms, the Affect Balance Scale (measures the ratio of positive to negative affect within the past few weeks), and a single-item life satisfaction measure. While not the primary focus of their study, Poulshock and Deimling (1984) found the caregiver’s level of depression (measured by the Zung Depression Scale) to be reflected in a modest but persistent way in other measures of caregiving burden and impact. Poulshock and Deimling (1984) advise other researchers not to overlook caregiver depression, as an antecedent or intervening variable, especially when caregivers self-report survey data. Gilhooly (1984) used the OARS Multidimensional Functional Assessment Questionnaire’s, ’mental health scale’ to measure the psychological well-being of caregivers to demented elderly. The assumption made by Gilhooly (1984) was that the impact of caring for a demented relative would be negative and result in poor mental health for the caregiver. Only marginal support was reported for the aforementioned assumption, with mental health ratings for caregivers ranging from good to mildly impaired, with no evidence of serious psychiatric disorders (Gilhooly, 1984). Limitations of the Gilhooly (1984) study include: cross-sectional analysis and lack of a control group for comparison. In a controlled study, Kahan et al. (1985), analyzed Alzheimer caregiver depression by collecting pre and post intervention data using the Zung Self-Rating Depression Scale. The intervention included a specifically designed group support 79 program for relatives of patients with Alzheimer’s disease and related disorders. The group program included educational/supportive activities and used basic principles of the cognitive-behavioral approach. There was no significant cfifference between mean Zung scores for the experimental or control groups before treatment (1) rarely/none of the tile (2) sole of the tine (3) nost of the tine (4) alnost all of the tine (9) no answer Here you bothered by things that don’t usually bother you? Have you not felt like eating; or had a poor appetite? Have you felt that you could not shake off the blues, even with the help frol fanily or friends? Have you felt that you were just as good as other people? Have you had trouble keeping your wind on what you were doing? Have you felt depressed? Have you felt that everything you did was an effort? Have you felt hopeful about the future? Have you thought your life has been a failure? Have you felt tearful? Has your sleep been restless? Here you happy? 13. 14. 15. 16. 17. 18. 19. 20. 15353 Have you talked less than usual? Have you felt lonely? Here people unfriendly? Have you enjoyed life? Have you had crying spells? Have you felt sad? Have you felt that people disliked you? Could you not get 'going'? Qgestionnaire ltens Used to Heasure the igpact of Caregiving on the Caregiver's Schedule: Response choices for all inpact on schedule questions: (1) strongly disagree (2) disagree (3) neither agree nor disagree (4) agree (5) strongly agree Hy activities are centered around care for l have to stop in the Iiddle of Iy work or activities to provide care. i have eliminated things fron ny schedule since caring for The constant interruptions lake it difficult to find tile for relaxation. I visit fanily and friends less since I have been caring for Caregiver Social interaction Questionnaire liens: 1. How often is caregiver with friends and relatives? (1) everyday (2) several days per/week (3) once a week (4) 2-3x per week (5) once per aonth (6) 5-1DX per year (7) less than 5! per year 1534. 2. How often are friends at caregiver’s hose? 3. How often does caregiver visit at (1) everyday (2) several days per/week (3) once a week (4) 2-3X per aonth (5) once per Ionth (6) not at all in past aonth friend’s hose? (1) everyday (2) several days per/week (3) once a week (4) 2-3X per Ionth (5) once per Ionth (6) not at all in past aonth 4. How often does caregiver telephone fanily/friends? (1) everyday (2) several days per/week (3) once a week (A) 2-3X per Ionth (5) once per month (6) not at all in past Ionth 5. How often does caregiver write friend/relative? (1) everyday (2) several days per/week (3) once a week (4) 2-3X per Ionth (5) once per month (6) not at all in past aonth 6. How often does caregiver attend religious services? (1) everyday (2) several days per/week (3) once a week (A) 2-3X per Ionth (5) once per Ionth (6) not at all in past Ionth Questionngire lteas used to Measure the Caregiver’s Assistance fro: Faaily and Friends: Caregivers were asked, 'hov often in the past three Ionths have fanily of friends . . . ' 1. Checked regularly on you? 1£355 2. Helped you with routine chores? 3. Helped you with heavy cleaning? 4. Helped you with legal or woney watters? S. Helped you with transportation? 6. Taken care of your relative so you could get away? 7. Hade weals for you? The nuwerical values reported by the caregiver on each of the seven questions above were suwwed for a cowbined score representing each individual caregiver. Questionnaire ltews used to Assess Caregiver Self-Care (i.e. Physiggl; Care, Tiwe-Care, Sleep-Care, Social-Care, Diet-Care): Response choices for all self-care questions: (1) never do this (2) do this occasionally (3) regularly do this 1. Exercise 15-30 win. 3 tiwes per/week. 2. Preforw leisure activity for fitness. 3. Maintain ideal body weight. 4. Eat a variety of foods. 5. Liwit fat and cholesterol. 6. Liwit refined sugar. 7. Liwit awount of salt. 8. Eat breakfast daily. 9. Drink wore than 3 cups of caffeinated beverages per/day. 10. Follow wedication label directions. 11. Know what wedications are for. 12. Take drugs without Dr.’s prescription. 13. Sleep 6 - 8 hours per/night. 14. Have uninterrupted sleep. 15. Sleep easily without wedications. 16. 17. 18. 19. 20. 21. 22. 23. 15365 Drink 6-8 cups of water per/day. Take laxatives. Observe body for cancer signs. Take tiwe for wyself daily. Report unusual signs/syaptows prowptly. ln norwal day walk one wile. Use alcohol and/or drugs when stressed. Go out with friends daily. REFERENCES REFERENCES ADRDA (1987). Fact. sheet on Alzheimer's disease. (Available from Alzheimer’s Disease and Related Disorders Association, lnc. 70 East Lake Street Suite 600 Chicago, ll. 60601 Phone 312-853-3060 Form: Ed2002 -7/87. Barnes, R.F., Raskind, M.A., Scott, M., 8: Murphy, C. (1981) Problems of families caring for Alzheimer’s patients: Use of a support. group. Journal of the American Geriatrics Society, 2§(2), 80-85. Belloc, N.B., and Breslow, l... (1972). Relationship of physical health status and health practices. 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