Journal of Religion and Health, Vol. 24, No. 1, Spring 1985
Spiritual Support for Caregivers of Dementia Patients SCOTT D. WRIGHT, CLARA C. PRATT, and VICKI L. SCHMALL A B S T R A C T : Dementia is considered the "major psychiatric disorder of old age" and affects over
4 million people in the United States. As Alzheimer's disease and other dementias progress, the patient can become increasingly dependent on the family for care. This dependency can place the caregiver in a role that is both difficult and demanding. In this study coping strategies used by family caregivers of dementia patients and caregivers' sense of burden were assessed. Burden scores were significantly correlated with spiritual support, an external coping strategy. When spiritual well-being is integrated with medical and psychosocial needs, the clergy and spiritual community can play an integral role in the care for families and dementia patients.
Spiritual Support No disease can destroy like this one. I t destroys the b r a i n yet leaves the physical body intact. To see a beautiful, talented, intelligent h u m a n being reduced to a living vegetable is almost beyond bearing. {Daughter a n d caregiver, aged 52}
A family's coping resources are severely tested when a member is stricken with dementia, particularly Alzheimer's disease. The Alzheimer's patient suffers progressive memory loss and in advanced stages becomes totally dependent on the care provider for basic needs. In a recent study of caregivers to dementia patients I one person eloquently expressed the objective difficulties and subjective pain that many caregivers endure: I was not prepared for the t o t a l i t y of the takeover; the presence of a d e m e n t i a person {Alzheimer's disease} in the home a n d careprovider's life p e r m e a t e s everything, w i t h o u t exception. The careprovider no longer has a life of her/his own; the careprovider no longer has an i d e n t i t y of his/her own; insofar as our selfhood is defined b y what we do, the careprovider has no o p p o r t u n i t y to be a n y t h i n g b u t a careprovider. The careprovider m u s t forgo a n y hopes for her/his own future, since a hope is based upon the i n s t i t u t i o n a l i z a t i o n or death of t h e Alzheimer's p e r s o n . . , and this is i n v i t i n g a massive guilt trip. {Daughter, aged
59) This article will present a brief overview of dementia, including Alzheimer's disease, and the role of family caregiving for dementia patients. Second, it will examine the role of spiritual support as a coping strategy for caregivers of Scott D. Wright, Ed.M., is a doctoral student in Human Development and Family Studies at Oregon State University in Corvallis, Oregon. Clara C. Pratt, Ph.D., is Associate Professor of Human Development and Family Studies and Director of Program on Gerontology at Oregon State University. Vicki L. Schmall, Ph.D., is Associate Professor and Extension Gerontology Specialist, Extension Service, College of Home Economics, at Oregon State University. 31
9 1985 Institutes of Religion and Health
32
Journal of Religion and Health
elderly dementia patients. When spiritual well-being is integrated with meeting medical and psychosocial needs, the clergy and the spiritual comm u n i t y can play an integral role in the care for families and dementia patients.
Dementia in the United States
Dementia refers to a group of closely related syndromes characterized by "failing memory and loss of other intellectual functions due to chronic progressive degenerative diseases of the brain. ''2 Dementia is the "major psychiatric disorder of old age, ''3 and it is estimated that about 15% of the population over the age of sixty-five suffer some degree {mild to severe} of dementia. 4 Thus, about 3-4 million people in the United States are directly affected by dementia. It was once believed t h a t senile dementia was primarily the result of cerebral arteriosclerosis, but over 50 different causes for dementia are now recognized. 6 Alzheimer's disease, an irreversible form of dementia, accounts for 50-60 percent of the cases reported during adult life. 7 Because ante-mortem tissue diagnosis and confirmation of Alzheimer's disease is difficult for the clinician, some researchers prefer to classify "Alzheimer's disease" (AD) as "dementia or senile dementia of the Alzheimer's t y p e " (SDATI. 8 Other researchers consider "senile dementia," "presenile dementia," and Alzheimer's disease to be one disease entity. 9 Throughout the medical literature there are numerous classification schemes used to describe the forms of dementia; unfortunately, the inconsistent use of terms can lead to a "semantic muddle. ''l~ In order to maintain clarity, this paper uses Alzheimer's disease to refer to presenile dementia, senile dementia, and senile dementia of the Alzheimer's type. Alzheimer's disease is characterized by an insidious onset and a gradual progressive deterioration in the cerebral cortex t h a t eventually leads to death. 11 It is accompanied by a variety of cognitive and behavioral symptoms t h a t typically manifest themselves over the course of five to ten years.12 The Alzheimer's patient becomes increasingly dependent on others to provide care and assistance in activities such as eating, bathing, and toileting. Often the patient becomes confused and disoriented and may engage in night wandering. Advanced stages may be marked by an inability to communicate or recognize family members and urinary and fecal incontinence. 13There is no known cause or cure for Alzheimer's disease, and it is now ranked as the fourth leading cause of death in the United States. 14 Multi-infarct dementia is the second major type of irreversible dementia, accounting for about 15 percent of later life dementias. 1~Multi-infarct dementia is differentiated from Alzheimer's disease by its abrupt onset and stepwise progression of symptoms. 16 Myocardial and cerebral infarction, arteriosclerosis, hypertension, and diabetes mellitus are examples of pathological factors that may contribute to multi-infarct dementias. The problems of caring for a patient with multi-infarct dementia are similar to those of the Alzheimer's patient. Differential diagnosis is extremely important for suspected dementia pa-
Scott D. Wright, Clara C. Pratt, and Vicki L. SchmaU
33
tients; about 20 percent of persons with dementialike s y m p t o m s are, in fact, suffering from treatable and reversible conditions.17 For example, an elderly individual who is severely depressed m a y exhibit behavioral traits such as memory impairment, disorientation, and confusion that mimic Alzheimer's disease, is Accurate and early diagnosis is imperative since effective psychotherapy and treatment m a y reverse such depressions. Drug interaction, toxins, infections, and vitamin deficiency are examples of other treatable conditions that may present dementialike symptoms. 19
Family caregiving for dementia patients As Alzheimer's disease and related dementias progress, the patient becomes increasingly dependent on family and natural support systems to provide care. 20 The presence of a family caregiver, particularly a spouse, is one of the major factors in preventing the institutionalization of a dependent older person. 2, There are more impaired elderly living in the community than residing in institutions. 22 As the primary source of support for long-term care, families usually follow the "principle of substitution" in caregiving, 2~that is, providing care in serial order rather than as a shared functioning unit. Typically, the responsibilities of caregiving fall primarily to the spouse or adult daughter. Caregivers are often faced with the prospect of social isolation; lack of time for self, family, and friends; career disruptions; financial drain; and the unresolved heavy physical labor in caregiving. 24 Brody and Lang point out that "unless family caregiving efforts are supplemented and strengthened, emotional and physical problems may be perpetuated down through the generations, ultimately affecting all family members and increasing the social and economic costs to the community." 25 Because the incidence of Alzheimer's disease increases from 5 percent for persons in their sixties to 20 percent for those over eighty, 26 increasing numbers of people are at risk owing to the increase in absolute and proportional numbers of older adults. 27 Furthermore, a declining birth rate (which reduces the potential number of adult children as care providers} and the entrance of more women (traditionally the "kin-keepers") into the labor market add up to "collision course" between social roles and filial responsibility. 2s In summation, Alzheimer's disease (senile dementia} is "one of the most critical medical-social-economic problems facing our society, ''29 as well as the individual caregiving families.
Spiritual support as coping resource for caregivers of dementia patients A family's reaction to a stressor or stressful situation is conceptualized as a set of responses generated both within the family and between the family and the community that reduce or minimize the impact of the stressor. 3~ In a recent study coping strategies used by caregivers of dementia patients and the relation of those strategies to the caregiver's subjective sense of burden were
34
Journal of Religion and Health
assessed. 31 Questionnaires were distributed at educational seminars on Alzheimer's disease and related disorders and at support group meetings for Alzheimer's caregivers in urban and rural areas throughout a western state. Two hundred and forty caregivers participated. The Caregiver Burden Scale was used to assess subjective feelings about caregiving. 32 The Family Coping Strategies (F-COPES} instrument was utilized to measure three internal and five external coping strategies. 33One internal coping strategy reflects the ability to redefine or "reframe" stressful experiences in a way t h a t makes them more desirable. The second internal coping strategy assesses confidence in the ability to handle problems. The third internal coping strategy is "passivity," which focuses on avoiding responses to problems and tends to reflect a "pessimistic attitude. ''34 The five external strategies reflect the degree to which families actively use the external social support systems t h a t may be available to them, including "spiritual support," "extended families," "friends," "neighbors," and " c o m m u n i t y resources." Burden scores were not significantly related to caregivers' age, sex, income, or education. However, burden scores significantly increased as hours spent in caregiving increased. Burden scores also significantly increased as the patients' emotional status decreased and as the caregivers' self-reported health status decreased. Caregiver burden scores were not significantly different for caregivers to patients living in the community compared to family caregivers to institutionalized patients. Caregiver burden scores were significantly (p < .05) correlated with three internal coping strategies {confidence in problem solving, r - - - . 1 8 ; reframing, r - - - . 1 5 ; and passivity, r=.26) and two external coping strategies {extended family, r = - .16; and spiritual support, r - - - .25) (Table 1}. Families who use "spiritual support" as a coping strategy seek advice from clergy, attend church services, participate in church activities, and express faith in God. Spiritual support was also significantly {p < .001) correlated with reframing, an internal coping strategy (r--.41). Reframing is the caregiver's ability to redefine a demanding situation in a more acceptable way in order to make the situation more manageable. Spiritual support may allow meaning to be found in the tremendous losses t h a t accompany Alzheimer's disease. For example, some respondents commented: Support from others is the most important element for me as a caregiver and faith in God. It is the most rewarding and devastating experience of my life. (Daughter, aged 45) I would not have given up this period to care for my parents for anything. There has been combativeness, wandering--lots of frustrations. But I'm learning for the first time to take each day at a time. It has been the richest time of our lives--not moneywise, by far--but in emotional and spiritual growth. This illness in the family is teaching me to gain strength from the Lord--and His instruments. (Daughter, aged 39) The caregiver has to have a great deal of patience and love, and it takes a lot of praying to receive this extra effort. (Spouse, aged 68) I have never felt resentful of the time in caring for my husband--only extremely tired at times. Our love is strong. Our faith is in the Lord. (Spouse, aged 75)
35
Scott D. Wright, Clara C. Pratt, and Vicki L. Schrnall
While spiritual support was associated with lower burden scores, some respondents admitted that the role of caregiver severely tested their religious faith. Some were angry with God; one asked: Why me? I've been good, honest. How come? Can you--can anyone--answer t h a t ? - - s o m e t h i n g basic is wrong9 {Spouse, aged 75}
The anger and frustration felt by some caregivers provoked a spiritual crisis. In The 36-HourDay, Mace and Rabins state: 9 people with a religious faith may question how God could allow this to happen to them. They may feel that it is a terrible sin to be angry with God or they may fear they have lost their faith. Such feelings may deprive them of the strength and reassurance faith offers at j u s t the time when they need it most. To struggle with such questions is part of the experience of faith. 3~
Implications for the pastoral community Caregivers need encouragement and support both to identify and effectively use sources of support. Equally important, families, friends, and other support networks, such as the pastoral community, need education in order to recognize and respond to the needs of the caregiver and of the Alzheimer's patient. Table 1 Correlation Coefficients of Caregivers' Burden Scores in Relationship to Potential Mediators of Burden
Potential Mediators of Burden F-COPES: Internal Strategies: Confidence in problem solving
-.18 ~a~
Refraining problems
-.15 ~
Passivity
.26~-~
External Strategies: Spiritual support
-.25 ~a~
Extended family
-.16 ~-~
Friends Neighbors Community services p < .05 ~wk p < .01
.02 -.07 .I0
36
Journal of Religion and Health
Pastoral counselors, ministers, and other clergy may be more helpful to family caregivers if they are familiar with books such as The 36-Hour Day, 36 Alzheimer's Disease: A Guide for Families, 37 and A Guide to Alzheimer's Disease for Family, Spouse and Friends. 38 These books provide realistic descriptions of Alzheimer's disease and related disorders and the responsibilities of the care provider. Local support groups sponsored through the Alzheimer's Disease and Related Disorders Association (ADRDA) are excellent sources of both emotional support and information for the family and community. State and local chapters are found at many hospitals and senior centers and can be identified through contacting: Alzheimer's Disease and Related Disorders Association, Inc. National Headquarters 360 North Michigan Avenue Chicago, Illinois 60601 (312) 853-3060 Counseling techniques for Alzheimer's patients and caregivers such as those proposed by LaBarge may prove to be helpful to pastoral counselors. 39 Teusink and Mahler have suggested that family members m a y undergo a "five-stage reaction process" (similar to those described by Ktlbler-Ross) when faced with the prospect of providing care for the Alzheimer's patient. 4~ This conceptualization m a y prove beneficial because it recognizes a normal series of reactions and thus may facilitate counseling and guidance procedures. As Tobin and Kulys propose, "supporting families in these efforts could reduce premature and unnecessary institutionalization and, also, facilitate coping with the mental anguish of seeing family members deteriorate and need to be institutionalized." 4, Pastoral counselors may provide emotional and spiritual support for families facing the decision to institutionalize a spouse, parent, or other relative. Even after the institutionalization of the dementia patient, feelings of guilt and burden may remain. Many respondents in our study echoed this, stating: Even though I was physically and emotionally unable to care for my husband, 9 I still have feelings of guilt and inadequacy. (Spouse, aged 68) Nursing care does relieve some of the physical burden, but the mental anguish, including guilt feelings, continues. {Spouse, aged 75) Spiritual support is a valuable resource for families facing the stressful situation of caregiving for a dependent relative. The spiritual dimension of health care is an integral part in the total well-being of both the dementia patient and the caregiver. The role of spirituality in the lives of the caregivers and dementia patients, like many others who face moments, months, or years of suffering, is eloquently stated by Raymond Schmitt, Jr., in his article"Suffering and Wisdom":
Scott D. Wright, Clara C. Pratt, and Vichi L. SchmaU
37
Man is limited in what he knows or thinks he knows or can know. His needs are often pressing, his powers small. He suffers f r u s t r a t i o n and pain again and again. Sometimes he responds with e m b i t t e r m e n t , sometimes with despair, sometimes with stagnation. However, to some is given a course of e n n o b l e m e n t and wisdom. Religion, at its best, gives u t t e r a n c e to m a n ' s i n v o l v e m e n t in being and n u r t u r e s those elements within him t h a t lead him toward a relatedness of courage and creativity, concern and caring, for all beings. Religion ennobles when it helps one who is himself suffering (as all do) to acknowledge his own h u m a n i t y and hurt, and in doing so to acknowledge and care for the h u m a n i t y a n d h u r t of others. 42
References
1. Pratt, C., Schmall, V., and Wright, S.D., "Coping Strategies, Social Support and Burden: Critical Dimensions of Caregiving for Dependent Elders." Paper presented at the annual meeting of the Western Gerontological Society, Anaheim, California, March 1984. 2. Adams, R.D., and Victor, M., Principles of Neurology. New York, McGraw-Hill Book Company, 1977, p. 270. 3. Schneck, M.R.; Reisberg, B.; and Ferris, S.H., "An Overview of Current Concepts of Alzheimer's Disease," A mer. J. Psychiatry, 1982, 139, 165-174. 4. Gershon, S., and Herman, S.P., "The Differential Diagnosis of Dementia," J. Amer. Geriatrics Society, 1982,30, s58-s66. 5. Schneck, op. cit., 165. 6. Gershon, op. cit., s58. 7. Ibid., s60. 8. Shuttleworth, E.C., "Atypical Presentations of Dementia of the Alzheimer Type," J. Amer. Geriatrics Society, 1984, 32, 485. 9. Ware, L.A., and Carper, M., "Living with Alzheimer's Disease Patients: Family Stresses and Coping Mechanisms," Psychotherapy: Theory, Research, and Practice, 1982, 19, 422481; Palmer, M.H., "Alzheimer's Disease and Critical Care," J. Gerontological Nursing, 1983, 9, 87. 10. Lipkowski, Z.J., "Differentiating Delirium from Dementia in the Elderly," Clinical Gerontologist, 1982, 1, 4. 11. Gwyther, L.P., and Matteson, M.A., "Care for the Caregivers," J. Gerontological Nursing, 1983, 9, 93-95. 12. Ibid., 93. 13. Ibid., 93. 14. Katzman, R.; Terry, R.D.; and Bick, K.L., eds., Alzheimer's Disease: Senile Dementia and Related Disorders. New York, Raven Press, 1977, p. 595. 15. Gershon, op. cit., 62. 16. Ibid., s63. 17. Ibid., s58. 18. Ware, 019.cit., 473. 19. Gershon, op. cit., s65. 20. Zarit, S.H.; Reever, K.E.; and Bach-Peterson, J., "Relatives of the Impaired Elderly: Correlates of Feelings of Burden," Gerontologist, 1980, 20, 649-655. 21. Palmore, E., "Total Chance of Institutionalization Among the Aged," Gerontologist, 1976, 16, 504-507. 22. Tobin, S.S., and Kulys, R. "The Family in the Institutionalizationof the Elderly," J. Social Issues, 1981, 37, 145-157. 23. Johnson, L.C., "Dyadic Family Relations and Social Support," Gerontologist, 1983, 23, 377383. 24. Archbold, P.G., "All Consuming Activity: The Family as Caregiver," Generations, 1982, 7, 12-13. 25. Brody, E.M., and Lang, A., "They Can't Do It All: Aging Daughters with Aged Mothers," Generations, 1982, 7, 18-20.
38
Journal of Religion and Health
26. Gwyther, op. cit., 93. 27. Schneck, op. cit., 165. 28. Treas, J., "Family Support Systems for the Aged: Some Social and Demographic Considerations," Gerontologist, 1977, 17, 486-491. 29. Aronson, M.K., and Lipkowitz, P., "Senile Dementia, Alzheimer's Type: The Family and the Health Care Delivery System,"J. Amer. Geriatrics Society, 1982, 29, s68-s71. 30. Olson, D.H.; McCubbin, H.I.; Barnes, H.; Larsen, A.; Muxen, M.; and Wilson, M., Families: What Makes Them Work. Beverly Hills, Sage Publications, 1983. 31. Pratt, op. cit. 32. Zarit, op. cir., 649. 33. McCubbin, H.I.; Patterson, J.; and Olson, D., "Family Coping Inventory." In McCubbin, H.I., and Patterson, J., eds, Systematic Assessment of Family Stress Resources and Coping." Tools for Research, Education and Clinical Intervention. St. Paul, Minn., University of Minnesota, Family Social Science, 1981. 34. Olson, op. cit., p. 145. 35. Mace, N.L., and Rabins, P.V., The 36-HourDay. Baltimore, Md., Johns Hopkins University Press, 1981, p. 158. 36. Ibid. 37. Powell, L.S., and Courtice, K., Alzheimer's Disease: A Guide for Families. Reading, Mass., Addison-Wesley Publishers Co., 1983. 38. Reisberg, B., A Guide to Alzheimer's Disease: For Families, Spouses and Friends. New York, The Free Press, 1983. 39. LaBarge, E., "Counseling Patients with Senile Dementia of the Alzheimer's Type and Their Families," Personnel and Guidance J., 1981, Nov., 139-142. 40. Tobin, op. cit., 153. 41. Teusink, J.P., and Mahler, S., "Helping Families Cope with Alzheimer's Disease," Hospital and Community Psychology, 1984, 35, 152-156. 42. Schmitt, R., Jr., "Suffering and Wisdom,"J. Religion and Health, 1981,20, 108-123.
Spiritual Support for Caregivers of Dementia Patients SCOTT D. WRIGHT, CLARA C. PRATT, and VICKI L. SCHMALL A B S T R A C T : Dementia is considered the "major psychiatric disorder of old age" and affects over
4 million people in the United States. As Alzheimer's disease and other dementias progress, the patient can become increasingly dependent on the family for care. This dependency can place the caregiver in a role that is both difficult and demanding. In this study coping strategies used by family caregivers of dementia patients and caregivers' sense of burden were assessed. Burden scores were significantly correlated with spiritual support, an external coping strategy. When spiritual well-being is integrated with medical and psychosocial needs, the clergy and spiritual community can play an integral role in the care for families and dementia patients.
Spiritual Support No disease can destroy like this one. I t destroys the b r a i n yet leaves the physical body intact. To see a beautiful, talented, intelligent h u m a n being reduced to a living vegetable is almost beyond bearing. {Daughter a n d caregiver, aged 52}
A family's coping resources are severely tested when a member is stricken with dementia, particularly Alzheimer's disease. The Alzheimer's patient suffers progressive memory loss and in advanced stages becomes totally dependent on the care provider for basic needs. In a recent study of caregivers to dementia patients I one person eloquently expressed the objective difficulties and subjective pain that many caregivers endure: I was not prepared for the t o t a l i t y of the takeover; the presence of a d e m e n t i a person {Alzheimer's disease} in the home a n d careprovider's life p e r m e a t e s everything, w i t h o u t exception. The careprovider no longer has a life of her/his own; the careprovider no longer has an i d e n t i t y of his/her own; insofar as our selfhood is defined b y what we do, the careprovider has no o p p o r t u n i t y to be a n y t h i n g b u t a careprovider. The careprovider m u s t forgo a n y hopes for her/his own future, since a hope is based upon the i n s t i t u t i o n a l i z a t i o n or death of t h e Alzheimer's p e r s o n . . , and this is i n v i t i n g a massive guilt trip. {Daughter, aged
59) This article will present a brief overview of dementia, including Alzheimer's disease, and the role of family caregiving for dementia patients. Second, it will examine the role of spiritual support as a coping strategy for caregivers of Scott D. Wright, Ed.M., is a doctoral student in Human Development and Family Studies at Oregon State University in Corvallis, Oregon. Clara C. Pratt, Ph.D., is Associate Professor of Human Development and Family Studies and Director of Program on Gerontology at Oregon State University. Vicki L. Schmall, Ph.D., is Associate Professor and Extension Gerontology Specialist, Extension Service, College of Home Economics, at Oregon State University. 31
9 1985 Institutes of Religion and Health
32
Journal of Religion and Health
elderly dementia patients. When spiritual well-being is integrated with meeting medical and psychosocial needs, the clergy and the spiritual comm u n i t y can play an integral role in the care for families and dementia patients.
Dementia in the United States
Dementia refers to a group of closely related syndromes characterized by "failing memory and loss of other intellectual functions due to chronic progressive degenerative diseases of the brain. ''2 Dementia is the "major psychiatric disorder of old age, ''3 and it is estimated that about 15% of the population over the age of sixty-five suffer some degree {mild to severe} of dementia. 4 Thus, about 3-4 million people in the United States are directly affected by dementia. It was once believed t h a t senile dementia was primarily the result of cerebral arteriosclerosis, but over 50 different causes for dementia are now recognized. 6 Alzheimer's disease, an irreversible form of dementia, accounts for 50-60 percent of the cases reported during adult life. 7 Because ante-mortem tissue diagnosis and confirmation of Alzheimer's disease is difficult for the clinician, some researchers prefer to classify "Alzheimer's disease" (AD) as "dementia or senile dementia of the Alzheimer's t y p e " (SDATI. 8 Other researchers consider "senile dementia," "presenile dementia," and Alzheimer's disease to be one disease entity. 9 Throughout the medical literature there are numerous classification schemes used to describe the forms of dementia; unfortunately, the inconsistent use of terms can lead to a "semantic muddle. ''l~ In order to maintain clarity, this paper uses Alzheimer's disease to refer to presenile dementia, senile dementia, and senile dementia of the Alzheimer's type. Alzheimer's disease is characterized by an insidious onset and a gradual progressive deterioration in the cerebral cortex t h a t eventually leads to death. 11 It is accompanied by a variety of cognitive and behavioral symptoms t h a t typically manifest themselves over the course of five to ten years.12 The Alzheimer's patient becomes increasingly dependent on others to provide care and assistance in activities such as eating, bathing, and toileting. Often the patient becomes confused and disoriented and may engage in night wandering. Advanced stages may be marked by an inability to communicate or recognize family members and urinary and fecal incontinence. 13There is no known cause or cure for Alzheimer's disease, and it is now ranked as the fourth leading cause of death in the United States. 14 Multi-infarct dementia is the second major type of irreversible dementia, accounting for about 15 percent of later life dementias. 1~Multi-infarct dementia is differentiated from Alzheimer's disease by its abrupt onset and stepwise progression of symptoms. 16 Myocardial and cerebral infarction, arteriosclerosis, hypertension, and diabetes mellitus are examples of pathological factors that may contribute to multi-infarct dementias. The problems of caring for a patient with multi-infarct dementia are similar to those of the Alzheimer's patient. Differential diagnosis is extremely important for suspected dementia pa-
Scott D. Wright, Clara C. Pratt, and Vicki L. SchmaU
33
tients; about 20 percent of persons with dementialike s y m p t o m s are, in fact, suffering from treatable and reversible conditions.17 For example, an elderly individual who is severely depressed m a y exhibit behavioral traits such as memory impairment, disorientation, and confusion that mimic Alzheimer's disease, is Accurate and early diagnosis is imperative since effective psychotherapy and treatment m a y reverse such depressions. Drug interaction, toxins, infections, and vitamin deficiency are examples of other treatable conditions that may present dementialike symptoms. 19
Family caregiving for dementia patients As Alzheimer's disease and related dementias progress, the patient becomes increasingly dependent on family and natural support systems to provide care. 20 The presence of a family caregiver, particularly a spouse, is one of the major factors in preventing the institutionalization of a dependent older person. 2, There are more impaired elderly living in the community than residing in institutions. 22 As the primary source of support for long-term care, families usually follow the "principle of substitution" in caregiving, 2~that is, providing care in serial order rather than as a shared functioning unit. Typically, the responsibilities of caregiving fall primarily to the spouse or adult daughter. Caregivers are often faced with the prospect of social isolation; lack of time for self, family, and friends; career disruptions; financial drain; and the unresolved heavy physical labor in caregiving. 24 Brody and Lang point out that "unless family caregiving efforts are supplemented and strengthened, emotional and physical problems may be perpetuated down through the generations, ultimately affecting all family members and increasing the social and economic costs to the community." 25 Because the incidence of Alzheimer's disease increases from 5 percent for persons in their sixties to 20 percent for those over eighty, 26 increasing numbers of people are at risk owing to the increase in absolute and proportional numbers of older adults. 27 Furthermore, a declining birth rate (which reduces the potential number of adult children as care providers} and the entrance of more women (traditionally the "kin-keepers") into the labor market add up to "collision course" between social roles and filial responsibility. 2s In summation, Alzheimer's disease (senile dementia} is "one of the most critical medical-social-economic problems facing our society, ''29 as well as the individual caregiving families.
Spiritual support as coping resource for caregivers of dementia patients A family's reaction to a stressor or stressful situation is conceptualized as a set of responses generated both within the family and between the family and the community that reduce or minimize the impact of the stressor. 3~ In a recent study coping strategies used by caregivers of dementia patients and the relation of those strategies to the caregiver's subjective sense of burden were
34
Journal of Religion and Health
assessed. 31 Questionnaires were distributed at educational seminars on Alzheimer's disease and related disorders and at support group meetings for Alzheimer's caregivers in urban and rural areas throughout a western state. Two hundred and forty caregivers participated. The Caregiver Burden Scale was used to assess subjective feelings about caregiving. 32 The Family Coping Strategies (F-COPES} instrument was utilized to measure three internal and five external coping strategies. 33One internal coping strategy reflects the ability to redefine or "reframe" stressful experiences in a way t h a t makes them more desirable. The second internal coping strategy assesses confidence in the ability to handle problems. The third internal coping strategy is "passivity," which focuses on avoiding responses to problems and tends to reflect a "pessimistic attitude. ''34 The five external strategies reflect the degree to which families actively use the external social support systems t h a t may be available to them, including "spiritual support," "extended families," "friends," "neighbors," and " c o m m u n i t y resources." Burden scores were not significantly related to caregivers' age, sex, income, or education. However, burden scores significantly increased as hours spent in caregiving increased. Burden scores also significantly increased as the patients' emotional status decreased and as the caregivers' self-reported health status decreased. Caregiver burden scores were not significantly different for caregivers to patients living in the community compared to family caregivers to institutionalized patients. Caregiver burden scores were significantly (p < .05) correlated with three internal coping strategies {confidence in problem solving, r - - - . 1 8 ; reframing, r - - - . 1 5 ; and passivity, r=.26) and two external coping strategies {extended family, r = - .16; and spiritual support, r - - - .25) (Table 1}. Families who use "spiritual support" as a coping strategy seek advice from clergy, attend church services, participate in church activities, and express faith in God. Spiritual support was also significantly {p < .001) correlated with reframing, an internal coping strategy (r--.41). Reframing is the caregiver's ability to redefine a demanding situation in a more acceptable way in order to make the situation more manageable. Spiritual support may allow meaning to be found in the tremendous losses t h a t accompany Alzheimer's disease. For example, some respondents commented: Support from others is the most important element for me as a caregiver and faith in God. It is the most rewarding and devastating experience of my life. (Daughter, aged 45) I would not have given up this period to care for my parents for anything. There has been combativeness, wandering--lots of frustrations. But I'm learning for the first time to take each day at a time. It has been the richest time of our lives--not moneywise, by far--but in emotional and spiritual growth. This illness in the family is teaching me to gain strength from the Lord--and His instruments. (Daughter, aged 39) The caregiver has to have a great deal of patience and love, and it takes a lot of praying to receive this extra effort. (Spouse, aged 68) I have never felt resentful of the time in caring for my husband--only extremely tired at times. Our love is strong. Our faith is in the Lord. (Spouse, aged 75)
35
Scott D. Wright, Clara C. Pratt, and Vicki L. Schrnall
While spiritual support was associated with lower burden scores, some respondents admitted that the role of caregiver severely tested their religious faith. Some were angry with God; one asked: Why me? I've been good, honest. How come? Can you--can anyone--answer t h a t ? - - s o m e t h i n g basic is wrong9 {Spouse, aged 75}
The anger and frustration felt by some caregivers provoked a spiritual crisis. In The 36-HourDay, Mace and Rabins state: 9 people with a religious faith may question how God could allow this to happen to them. They may feel that it is a terrible sin to be angry with God or they may fear they have lost their faith. Such feelings may deprive them of the strength and reassurance faith offers at j u s t the time when they need it most. To struggle with such questions is part of the experience of faith. 3~
Implications for the pastoral community Caregivers need encouragement and support both to identify and effectively use sources of support. Equally important, families, friends, and other support networks, such as the pastoral community, need education in order to recognize and respond to the needs of the caregiver and of the Alzheimer's patient. Table 1 Correlation Coefficients of Caregivers' Burden Scores in Relationship to Potential Mediators of Burden
Potential Mediators of Burden F-COPES: Internal Strategies: Confidence in problem solving
-.18 ~a~
Refraining problems
-.15 ~
Passivity
.26~-~
External Strategies: Spiritual support
-.25 ~a~
Extended family
-.16 ~-~
Friends Neighbors Community services p < .05 ~wk p < .01
.02 -.07 .I0
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Journal of Religion and Health
Pastoral counselors, ministers, and other clergy may be more helpful to family caregivers if they are familiar with books such as The 36-Hour Day, 36 Alzheimer's Disease: A Guide for Families, 37 and A Guide to Alzheimer's Disease for Family, Spouse and Friends. 38 These books provide realistic descriptions of Alzheimer's disease and related disorders and the responsibilities of the care provider. Local support groups sponsored through the Alzheimer's Disease and Related Disorders Association (ADRDA) are excellent sources of both emotional support and information for the family and community. State and local chapters are found at many hospitals and senior centers and can be identified through contacting: Alzheimer's Disease and Related Disorders Association, Inc. National Headquarters 360 North Michigan Avenue Chicago, Illinois 60601 (312) 853-3060 Counseling techniques for Alzheimer's patients and caregivers such as those proposed by LaBarge may prove to be helpful to pastoral counselors. 39 Teusink and Mahler have suggested that family members m a y undergo a "five-stage reaction process" (similar to those described by Ktlbler-Ross) when faced with the prospect of providing care for the Alzheimer's patient. 4~ This conceptualization m a y prove beneficial because it recognizes a normal series of reactions and thus may facilitate counseling and guidance procedures. As Tobin and Kulys propose, "supporting families in these efforts could reduce premature and unnecessary institutionalization and, also, facilitate coping with the mental anguish of seeing family members deteriorate and need to be institutionalized." 4, Pastoral counselors may provide emotional and spiritual support for families facing the decision to institutionalize a spouse, parent, or other relative. Even after the institutionalization of the dementia patient, feelings of guilt and burden may remain. Many respondents in our study echoed this, stating: Even though I was physically and emotionally unable to care for my husband, 9 I still have feelings of guilt and inadequacy. (Spouse, aged 68) Nursing care does relieve some of the physical burden, but the mental anguish, including guilt feelings, continues. {Spouse, aged 75) Spiritual support is a valuable resource for families facing the stressful situation of caregiving for a dependent relative. The spiritual dimension of health care is an integral part in the total well-being of both the dementia patient and the caregiver. The role of spirituality in the lives of the caregivers and dementia patients, like many others who face moments, months, or years of suffering, is eloquently stated by Raymond Schmitt, Jr., in his article"Suffering and Wisdom":
Scott D. Wright, Clara C. Pratt, and Vichi L. SchmaU
37
Man is limited in what he knows or thinks he knows or can know. His needs are often pressing, his powers small. He suffers f r u s t r a t i o n and pain again and again. Sometimes he responds with e m b i t t e r m e n t , sometimes with despair, sometimes with stagnation. However, to some is given a course of e n n o b l e m e n t and wisdom. Religion, at its best, gives u t t e r a n c e to m a n ' s i n v o l v e m e n t in being and n u r t u r e s those elements within him t h a t lead him toward a relatedness of courage and creativity, concern and caring, for all beings. Religion ennobles when it helps one who is himself suffering (as all do) to acknowledge his own h u m a n i t y and hurt, and in doing so to acknowledge and care for the h u m a n i t y a n d h u r t of others. 42
References
1. Pratt, C., Schmall, V., and Wright, S.D., "Coping Strategies, Social Support and Burden: Critical Dimensions of Caregiving for Dependent Elders." Paper presented at the annual meeting of the Western Gerontological Society, Anaheim, California, March 1984. 2. Adams, R.D., and Victor, M., Principles of Neurology. New York, McGraw-Hill Book Company, 1977, p. 270. 3. Schneck, M.R.; Reisberg, B.; and Ferris, S.H., "An Overview of Current Concepts of Alzheimer's Disease," A mer. J. Psychiatry, 1982, 139, 165-174. 4. Gershon, S., and Herman, S.P., "The Differential Diagnosis of Dementia," J. Amer. Geriatrics Society, 1982,30, s58-s66. 5. Schneck, op. cit., 165. 6. Gershon, op. cit., s58. 7. Ibid., s60. 8. Shuttleworth, E.C., "Atypical Presentations of Dementia of the Alzheimer Type," J. Amer. Geriatrics Society, 1984, 32, 485. 9. Ware, L.A., and Carper, M., "Living with Alzheimer's Disease Patients: Family Stresses and Coping Mechanisms," Psychotherapy: Theory, Research, and Practice, 1982, 19, 422481; Palmer, M.H., "Alzheimer's Disease and Critical Care," J. Gerontological Nursing, 1983, 9, 87. 10. Lipkowski, Z.J., "Differentiating Delirium from Dementia in the Elderly," Clinical Gerontologist, 1982, 1, 4. 11. Gwyther, L.P., and Matteson, M.A., "Care for the Caregivers," J. Gerontological Nursing, 1983, 9, 93-95. 12. Ibid., 93. 13. Ibid., 93. 14. Katzman, R.; Terry, R.D.; and Bick, K.L., eds., Alzheimer's Disease: Senile Dementia and Related Disorders. New York, Raven Press, 1977, p. 595. 15. Gershon, op. cit., 62. 16. Ibid., s63. 17. Ibid., s58. 18. Ware, 019.cit., 473. 19. Gershon, op. cit., s65. 20. Zarit, S.H.; Reever, K.E.; and Bach-Peterson, J., "Relatives of the Impaired Elderly: Correlates of Feelings of Burden," Gerontologist, 1980, 20, 649-655. 21. Palmore, E., "Total Chance of Institutionalization Among the Aged," Gerontologist, 1976, 16, 504-507. 22. Tobin, S.S., and Kulys, R. "The Family in the Institutionalizationof the Elderly," J. Social Issues, 1981, 37, 145-157. 23. Johnson, L.C., "Dyadic Family Relations and Social Support," Gerontologist, 1983, 23, 377383. 24. Archbold, P.G., "All Consuming Activity: The Family as Caregiver," Generations, 1982, 7, 12-13. 25. Brody, E.M., and Lang, A., "They Can't Do It All: Aging Daughters with Aged Mothers," Generations, 1982, 7, 18-20.
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Journal of Religion and Health
26. Gwyther, op. cit., 93. 27. Schneck, op. cit., 165. 28. Treas, J., "Family Support Systems for the Aged: Some Social and Demographic Considerations," Gerontologist, 1977, 17, 486-491. 29. Aronson, M.K., and Lipkowitz, P., "Senile Dementia, Alzheimer's Type: The Family and the Health Care Delivery System,"J. Amer. Geriatrics Society, 1982, 29, s68-s71. 30. Olson, D.H.; McCubbin, H.I.; Barnes, H.; Larsen, A.; Muxen, M.; and Wilson, M., Families: What Makes Them Work. Beverly Hills, Sage Publications, 1983. 31. Pratt, op. cit. 32. Zarit, op. cir., 649. 33. McCubbin, H.I.; Patterson, J.; and Olson, D., "Family Coping Inventory." In McCubbin, H.I., and Patterson, J., eds, Systematic Assessment of Family Stress Resources and Coping." Tools for Research, Education and Clinical Intervention. St. Paul, Minn., University of Minnesota, Family Social Science, 1981. 34. Olson, op. cit., p. 145. 35. Mace, N.L., and Rabins, P.V., The 36-HourDay. Baltimore, Md., Johns Hopkins University Press, 1981, p. 158. 36. Ibid. 37. Powell, L.S., and Courtice, K., Alzheimer's Disease: A Guide for Families. Reading, Mass., Addison-Wesley Publishers Co., 1983. 38. Reisberg, B., A Guide to Alzheimer's Disease: For Families, Spouses and Friends. New York, The Free Press, 1983. 39. LaBarge, E., "Counseling Patients with Senile Dementia of the Alzheimer's Type and Their Families," Personnel and Guidance J., 1981, Nov., 139-142. 40. Tobin, op. cit., 153. 41. Teusink, J.P., and Mahler, S., "Helping Families Cope with Alzheimer's Disease," Hospital and Community Psychology, 1984, 35, 152-156. 42. Schmitt, R., Jr., "Suffering and Wisdom,"J. Religion and Health, 1981,20, 108-123.
