- Email: [email protected]
Social Issues of the Alzheimer’s Patient and Family
Social Issues of the Alzheimer’s Patient and Family Lisa P. Gwyther, MSW
Families caring for a person with Alzheimer’s disease (AD) soon discover that it is unlike any other illness. Coping with a degenerative brain disease is much different than dealing with a physical disability. AD is more disruptive to, and has greater impact on, the family than other chronic diseases. AD caregiving carries with it a high financial, social, and emotional price. Families must work toward effectively coping with the disease, decreasing the harmful effects on the family, and keeping family conflicts to a minimum. Support groups can provide families with much-needed information on the disease, emotional and practical support, and an expressive or advocacy outlet. Formal services can help relieve some of the burden of caring for an AD patient. Family members must remember that there is no “right” way to care for a person with AD, and each family must determine, with the help of the appropriate professionals and services, how to best meet its own needs. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the caregiver. Am J Med. 1998;104(4A): 17S–21S. © 1998 by Excerpta Medica, Inc.
L
iving with Alzheimer’s disease (AD) is about learning to “bend without breaking.” The disease affects multiple generations within the family and each family responds in its own unique ways. The person with the disease faces social issues that are somewhat different from those faced by the family. Still, living with AD implies a permanent imbalance in the normal give-and-take of family relationships. Increasingly, adjustments and adaptations must be made by the family, often in the context of uncharacteristic resistance, suspicion, or indifference from a memory- and judgment-impaired relative. In all cases, caregiving involves loss and a set of decisions about tasks—where the person will live and with whom; accepting help and from whom, when, and at what cost. Because the family is rarely one voice, family care becomes a juggling act between competing needs, loyalties, responsibilities, and demands. Isolation, unpredictability, fear, fatigue, and overwhelming loss of control are common social issues confronted by most families living with AD. Special emphasis should be placed on family expectations and subjective perceptions of the adequacy and dependability of informal and formal support in predicting adaptation to the disease and care demands. The selection, timing, and ‘‘dosing’’ of education, support, and services are equally important considerations if the family caregivers are to maximize positive outcomes with limited available resources.
THE UNIQUENESS OF ALZHEIMER’S DISEASE
From the Department of Psychiatry and Behavioral Sciences, and the Bryan Alzheimer’s Disease Research Center, Duke University Medical Center, Durham, North Carolina. Address requests for reprints to Lisa P. Gwyther, MSW, Box 3600 Duke University Medical Center, Durham, North Carolina 27710. © 1998 by Excerpta Medica, Inc. All rights reserved.
In many ways, AD is unlike any other illness. First, it is a challenge to diagnose this disease in its early stages. It is now believed that the onset of AD may actually begin decades before the first symptoms are manifested.1 The disease is remarkable in that it affects the individual cognitively, functionally, behaviorally, socially, and physically. The rate, development, and course of AD symptoms are highly unpredictable and heterogeneous. Individuals with the disease have variable capacity for decision-making; the ability to perform some activities of daily living may be affected, whereas other abilities will remain intact. Moments of lucidity and insight, as well as vestiges of the person that the individual with AD once was, can continue well into the disease course. All of these elements make AD a difficult disease with which to cope for both the patient and family. The family must deal with the fact that their relative’s con0002-9343/98/$19.00 17S PII S0002-9343(98)00024-2
A Symposium: Alzheimer’s Disease/Gwyther
dition will gradually deteriorate until the person with AD eventually does not recognize those closest to him or her. Persons with AD become debilitated to the point where institutional care is usually necessary. The moments of lucidity can be particularly confusing to family members, who may wonder how the individual can be so “good” one minute and devoid of reason in the next. Because of this, issues such as driving, medications, and handling money become particularly complex for family members. Studies have shown that personality and behavioral changes in AD patients and caregiver feelings of burden are directly correlated.2 Family members must also contend with a dearth of care providers, as well as the inadequate quality and training of many. Traditional medical approaches and support services that can be effective when dealing with other chronic illnesses are often of little or no assistance—what good are mobile meals if the individual with AD will not let the deliverer in the door or keeps the meal unrefrigerated to eat weeks later? Much of the necessary supervision and care is not reimbursable; this, coupled with high out-of-pocket costs, can make caring for an individual with AD a heavy financial burden.
THE ACCIDENTAL CAREGIVER The costs of AD, however, go far beyond its financial impact. Families of AD patients do not set out to become caregivers. It is a demanding job, with no salary, benefits, sick days, or vacations. The insidiousness of their new role as well as the vigilance and supervision involved overwhelms many family members. Caregiving is not without costs. It is not a job for women only, although female family members often do bear the burden of caregiving and report poorer health and well-being than male family members.3 It is not romantic, nor does it come naturally for many. Although families report some positive aspects of care experiences, caregiving is often associated with stress and burden, frequently at the expense of one’s own health. Alzheimer’s disease caregivers soon learn that sources of support are often simultaneously sources of stress. One study, designed to identify qualities of the multigenerational family that affect the demands of AD caregiving, showed that family members of AD patients derived comfort and benefited from being part of a family. At the same time, family members reported that certain negative aspects of family relationships directly and adversely affected their health and well-being.3 Mental and physical health, financial resources, personal/social/leisure time and satisfaction, and quality of life can all be compromised by being a part of an AD caregiving family. What is particularly distressing about the burden placed on family members is that many of those called upon to provide care are inordinately vulnerable. This is 18S April 27, 1998
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due in part to the fact that the AD patient has usually reached an advanced age. Often, caregivers most at risk for negative outcomes are single, widowed, or divorced females, older spouses or children, or members of a lowincome, minority group.4
EFFECTS OF DEMOGRAPHIC TRENDS Family systems recently have undergone many changes.5 Many adults are marrying later in life and are waiting longer to have children. In addition, couples today are generally having fewer children than their parents. The high divorce rate and incidence of remarriage has complicated the family structure. Families may now consist of numerous individuals linked by several common family members. The greater labor force participation of women, as well as the high incidence of divorce, has led to an increase in female heads of households. In addition, people are living longer, although not always without deterioration of their health. There is, therefore, a greater number of people over the age of 85 who are living with chronic illness while caring for someone with AD. These demographic trends all have an impact on AD caregivers. Single parents may face a double financial burden of caring for their children and parents. Multiple marriages may lead to a lack of clearly defined familial roles and conflict over issues related to caregiving. In addition to changes in the family structure, other trends affect the family caring for an individual with AD. There is more long-distance care. Family members are often spread out in different locations and tend to their caregiving responsibilities from afar. Some families may attempt to relocate their parents to their homes or share the responsibilities by moving the parent between homes. Such solutions carry their own risk. The lack of a consistent environment often exacerbates symptoms for the AD patient. Due to their additional personal and professional responsibilities, families will become less able to provide hands-on care, and more likely to become care managers. Also, many families find themselves overwhelmed by their first experience negotiating through the maze of health and social service agencies. Whereas many families are forced to use institutional care because home-care reimbursement is unavailable, most do not relinquish their caregiving responsibilities until very late in the course of the illness. Many remain actively involved via visits to the nursing home resident and regular contact with staff. This is an incredibly demanding task, especially when added to a family member’s existing career and domestic obligations. Alzheimer’s disease family members often experience stress symptoms, such as fatigue, feeling overwhelmed or isolated, anger, fear, guilt, loss of pleasure and motivation, sadness, and grief. Changes in social and leisure participation are particularly distressing to family members. The withdrawal of friends and inability to participate in
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pleasurable activities can be extremely disconcerting and create even deeper feelings of loneliness and isolation.
FAMILY CARE GOALS To combat these stressors, the AD caregiving family must set attainable goals geared toward coping better and then work to achieve those goals. They can include: (1) increasing effectiveness of care and coping strategies; (2) increasing satisfaction with the family member’s preferred level of involvement— often, no matter how much an individual is doing for his or her family member with AD, he or she harbors feelings that it is not enough; (3) decreasing negative consequences on the family; and (4) minimizing family conflicts.
HAZARDS OF DECISION MAKING There are many “hazards,” however, that may complicate or limit a family’s ability to attain these goals, or to effectively make decisions that are in the best interest of the individual with AD. Caregiving family members often feel that they are faced with an unrelenting series of crises that immobilize their capacity for reasoned decisions. Also, caregivers can find themselves bound by old promises (a vow never to place a parent in a home, for example) that later limit their ability to make the appropriate decisions for themselves and the individual with AD. “Chasing ghosts,” such as clinging to perceptions of the person the AD patient once was, can also hamper the decision-making process. Also problematic are family members’ conflicting perceptions and expectations concerning care and the possible outcomes of care. Issues of control and situations where there are simply too few available or affordable choices from which to make decisions are also common hazards.
SUCCESSFUL COPING STRATEGIES Whereas families usually have the ability to quickly “mobilize” to deal with short-term crises, such as acute illness and disability, different mechanisms are needed for long-term, progressive illnesses. To cope effectively with the demands of dementia care, a combination of strategies is needed. Caregivers must learn to change what can be changed through information gathering and direct action. They must also train themselves to cope with their reactions to what cannot be changed (and “intrapsychic” tricks or reframing perspectives—“tomorrow will be better,” “my husband is difficult but he could be worse”) . Practical and creative problem solving, prayer, humor, the dependable support of family and friends, expressive outlets, the ability to forgive others and one’s self, and learning how to economize the personal and family “energy” that is available, for example, can all be effective coping strategies. Flexibility of expectations is extremely important. Expectations placed by the family members on themselves
and the person with AD that cannot be effectively met can lead to feelings of frustration and failure. Knowing when to modify expectations to better fit the AD patient’s needs and the capacity of the family to satisfy them, will help decrease some of the pressures of caregiving. Avoiding or decreasing “Type A” behaviors can also be beneficial; there is no room for time pressure, perfectionism, and rigidity in AD care. ‘‘Good enough for now’’ solutions may be adequate and appropriate. Studies have shown that religious families find their strong faith helpful in coping with their AD caregiving burdens.6 Faith can provide a family with explanations for what is not known or unknowable, and offer the promise of hope for better things in the future. Church or community groups can often provide caregivers with many of the same benefits as support groups, and religious or group rituals can offer reassurance and heal much in the way that meditation or exercise can. Respites or “sabbaticals” from duties as a caregiver can also have a positive therapeutic effect. Learning to take “time out” without being overwhelmed by feelings of guilt can be difficult but also can have a very positive impact on the mental well-being of the caregiver.
WHAT AD FAMILIES WANT TO KNOW As mentioned above, information gathering can be not only of practical value to the caregiving family but can act as an effective coping mechanism. With that in mind, physicians should be prepared for the types of questions they are likely to encounter. These questions can be categorized as the “who,” “what,” “where,” “when,” “why,” and “how” questions. (1) Who: Who specializes in this? Who is at risk? Who pays for this? (2) What: What tests are necessary? What are the effects of other illnesses and medications? What causes AD? What treatments are useful? What can we expect next? What about driving? What about the rest of us? (3) Where: Where should he or she live? Where can he or she travel? Where is it written? Where can I get help? (4) When: When do we take over the finances? When is it dangerous to let him or her live alone? When will he or she no longer know me? When will he or she need a nursing home? (5) Why: Why does this happen to people with no lifestyle risks? Why is he or she so unlike him/herself? Why doesn’t he or she try harder? Why doesn’t he or she trust me? Why doesn’t Medicare cover this? Why don’t I feel better now that he or she is in a nursing home? (6) How: How much is enough? How long will this last? How will we know if it is working?
SUPPORT GROUPS Research has shown the benefit of formal support groups and services for both AD patients and their caregivers.7,8 Support groups can help AD families realize that others are experiencing the same difficulties, as well as provide practical advice on what has and has not worked for others. These
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Table 1. Services for Alzheimer’s Disease Care • • • • • • • • • • • • • • • •
family (Table 1), there is no chronological order of services that caregivers may use; as a result, individuals are often unsure of what services they should be utilizing and when. For example, home health care is not available for everyone; nursing homes and residential programs can often better meet the needs of the person with Alzheimer’s but may not be affordable long term.
Diagnostic/functional assessment Interpretive/educational programs Treatment/research participation options Primary care Financial/legal/insurance options Urgent, acute, subacute, rehabilitative, and hospital care Information/referral/linkage Counseling: cognitive, behavioral, affective Home care Specialty consultations Support options Respite options Security/Safety options/SAFE RETURN Residential/nursing-home services Terminal/hospice/palliative care Bereavement services/altruistic outlets
WHAT FAMILIES WANT FROM PHYSICIANS: THE EIGHT “Rs”
groups are a good source for consumer information and coping models, and also serve as expressive outlets. Positive outcomes derived from support groups include increased knowledge of the illness and services available, as well as decreased feelings of isolation. A growing trend in support group services is toward specialization. In addition to groups for patients, caregivers, couples, and families, support groups are now also based on gender, age, setting of care, and stage of disease. Some employee assistance programs now offer counseling and referral, and guidance can also be found through the visual and print media in the form of documentaries, reference lists, and first-person accounts. Because the debilitating nature of AD makes travel difficult for both the patient and caregiver, support is now available through electronic mail, Internet chat groups, and toll-free numbers, such as those of the Alzheimer’s Association ([800] 272-3900) and the Alzheimer’s Disease Education and Referral Center ([800] 438-4380).
FORMAL SERVICES Studies have shown a reluctance on the part of families to utilize both support and formal services.9 The general reluctance to use such programs is partially based on mistrust of professional and paid services, and a fear of future costs. There is often a delay in use, underutilization, or inappropriate use of paid services because of this. On average, families use many fewer services than recommended by professionals.10 Although family members may feel comfortable turning to physicians for assistance— often out of respect for the position of authority which they perceive physicians to occupy—services such as home-care or respite services are often contacted simply as “last-ditch” efforts to avoid nursing-home placement. Although many of the services offered address the legitimate healthcare needs of the AD patient and his or her 20S April 27, 1998
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As stated previously, the AD caregiving family often looks to the physician for guidance, initially unsure of many other sources of information and assistance. Generally, there are 8 areas about which the family looks to their doctor, or the 8 “Rs”11: (1) “Rx” for active treatment; (2) reliable expert primary medical skills; (3) recognition of family efforts and loss; (4) reassurance of continuity; (5) relevant information concerning their situation; (6) retained family control; (7) reminders (i.e., “There is no perfectly secure environment, etc.”); and (8) referrals to quality, reimbursable, or low-cost services.
CONCLUSIONS As they struggle to cope effectively with their difficulties, relatives of persons with AD must remind themselves that the family has a “problem in living,” and that the family is not necessarily the problem. Family members of AD patients must give themselves permission to be human. It is not uncommon to lose patience with a relative who asks the same question repeatedly. Although a desirable goal, there is no perfectly fair division of family care responsibility. There is also no way always to be in control in an AD caregiving situation; behavioral disturbances are inevitable, no matter how safe, controlled, stimulating, and reassuring the environment. As mentioned earlier, Type A personality characteristics and dementia care do not mix well. There is no all-encompassing, “right” way to care for a spouse or parent with AD, and no one right setting where that care should take place. Individuals respond to different approaches and individual families must determine for themselves, with the aid of the professionals and support services available to them, what is best for their family. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the family caregiver.
REFERENCES 1. Small GW, Rabins PV, Barry PP, Buckholtz NS, Dekosky ST, Ferns SH, Finkel SI, Gwyther LP, Khachaturian ZS, Lebowitz BP, McRae TD, Morris JC, Oakley F, Schneider LS, Streim JE, Sunderland T, Teri LA, Ture LE. Diagnosis and treatment of Alzheimer’s disease and related disorders: consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer’s Association, and the American Geriatrics Society JAMA. 1997;278:1363–1371. 2. Welleford EA, Harkins SW, Taylor JR. Personality changes
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3.
4.
5. 6. 7.
in dementia of the Alzheimer’s type: relations to caregiver personality and burden. Exp Aging Res. 1995;21:295–314. Fisher L, Lieberman MA. Alzheimer’s disease: the impact of the family on spouses, offspring, and inlaws. Fam Process. 1994;33:305–325. Exploding the Myths: Caregiving in America. Washington, DC: House Select Committee on Aging; 1987. US Department of Health, Education, and Welfare publication. Pub. No 99 – 611. Suzman RT. A World without Alzheimer’s Disease: a Dream within Reach. Chicago: Alzheimer’s Association, 1997. Kaye J, Robinson KM. Spirituality among caregivers. Image J Nurs Sch. 1994;26:218 –221. Bass DM, Noelker LS, Rechlin LR. The moderating influence of service use on negative caregiving consequences. J Gerontol B Psychol Sci Soc Sci. 1996;51:S121–S131.
8. Gwyther LP. Service delivery and utilization: research directions and clinical implications. In: Light E, Niederehe G, Lebowitz B, eds. Stress Effects on Family Caregivers and Alzheimer’s patients. New York: Springer, 1994:293– 300. 9. Ganzer C, England SE. Alzheimer’s care and service utilization: generating practice concepts from empirical findings and narratives. Health Soc Work. 1994;19:171– 174. 10. Stone R, Cafferata GL, Sangl J. Caregivers of the frail elderly: a national profile. Gerontologist. 1987;27:616 – 626. 11. Gwyther LP. Care for families facing Alzheimer’s disease. Primary care practice implications from research. In: Khatchaturian ZS, Radebaugh TS, eds. Alzheimer’s Disease: Causes, Diagnosis, Treatment, and Care. Boca Raton, Fla; CRC Press, 1996:323–331.
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Families caring for a person with Alzheimer’s disease (AD) soon discover that it is unlike any other illness. Coping with a degenerative brain disease is much different than dealing with a physical disability. AD is more disruptive to, and has greater impact on, the family than other chronic diseases. AD caregiving carries with it a high financial, social, and emotional price. Families must work toward effectively coping with the disease, decreasing the harmful effects on the family, and keeping family conflicts to a minimum. Support groups can provide families with much-needed information on the disease, emotional and practical support, and an expressive or advocacy outlet. Formal services can help relieve some of the burden of caring for an AD patient. Family members must remember that there is no “right” way to care for a person with AD, and each family must determine, with the help of the appropriate professionals and services, how to best meet its own needs. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the caregiver. Am J Med. 1998;104(4A): 17S–21S. © 1998 by Excerpta Medica, Inc.
L
iving with Alzheimer’s disease (AD) is about learning to “bend without breaking.” The disease affects multiple generations within the family and each family responds in its own unique ways. The person with the disease faces social issues that are somewhat different from those faced by the family. Still, living with AD implies a permanent imbalance in the normal give-and-take of family relationships. Increasingly, adjustments and adaptations must be made by the family, often in the context of uncharacteristic resistance, suspicion, or indifference from a memory- and judgment-impaired relative. In all cases, caregiving involves loss and a set of decisions about tasks—where the person will live and with whom; accepting help and from whom, when, and at what cost. Because the family is rarely one voice, family care becomes a juggling act between competing needs, loyalties, responsibilities, and demands. Isolation, unpredictability, fear, fatigue, and overwhelming loss of control are common social issues confronted by most families living with AD. Special emphasis should be placed on family expectations and subjective perceptions of the adequacy and dependability of informal and formal support in predicting adaptation to the disease and care demands. The selection, timing, and ‘‘dosing’’ of education, support, and services are equally important considerations if the family caregivers are to maximize positive outcomes with limited available resources.
THE UNIQUENESS OF ALZHEIMER’S DISEASE
From the Department of Psychiatry and Behavioral Sciences, and the Bryan Alzheimer’s Disease Research Center, Duke University Medical Center, Durham, North Carolina. Address requests for reprints to Lisa P. Gwyther, MSW, Box 3600 Duke University Medical Center, Durham, North Carolina 27710. © 1998 by Excerpta Medica, Inc. All rights reserved.
In many ways, AD is unlike any other illness. First, it is a challenge to diagnose this disease in its early stages. It is now believed that the onset of AD may actually begin decades before the first symptoms are manifested.1 The disease is remarkable in that it affects the individual cognitively, functionally, behaviorally, socially, and physically. The rate, development, and course of AD symptoms are highly unpredictable and heterogeneous. Individuals with the disease have variable capacity for decision-making; the ability to perform some activities of daily living may be affected, whereas other abilities will remain intact. Moments of lucidity and insight, as well as vestiges of the person that the individual with AD once was, can continue well into the disease course. All of these elements make AD a difficult disease with which to cope for both the patient and family. The family must deal with the fact that their relative’s con0002-9343/98/$19.00 17S PII S0002-9343(98)00024-2
A Symposium: Alzheimer’s Disease/Gwyther
dition will gradually deteriorate until the person with AD eventually does not recognize those closest to him or her. Persons with AD become debilitated to the point where institutional care is usually necessary. The moments of lucidity can be particularly confusing to family members, who may wonder how the individual can be so “good” one minute and devoid of reason in the next. Because of this, issues such as driving, medications, and handling money become particularly complex for family members. Studies have shown that personality and behavioral changes in AD patients and caregiver feelings of burden are directly correlated.2 Family members must also contend with a dearth of care providers, as well as the inadequate quality and training of many. Traditional medical approaches and support services that can be effective when dealing with other chronic illnesses are often of little or no assistance—what good are mobile meals if the individual with AD will not let the deliverer in the door or keeps the meal unrefrigerated to eat weeks later? Much of the necessary supervision and care is not reimbursable; this, coupled with high out-of-pocket costs, can make caring for an individual with AD a heavy financial burden.
THE ACCIDENTAL CAREGIVER The costs of AD, however, go far beyond its financial impact. Families of AD patients do not set out to become caregivers. It is a demanding job, with no salary, benefits, sick days, or vacations. The insidiousness of their new role as well as the vigilance and supervision involved overwhelms many family members. Caregiving is not without costs. It is not a job for women only, although female family members often do bear the burden of caregiving and report poorer health and well-being than male family members.3 It is not romantic, nor does it come naturally for many. Although families report some positive aspects of care experiences, caregiving is often associated with stress and burden, frequently at the expense of one’s own health. Alzheimer’s disease caregivers soon learn that sources of support are often simultaneously sources of stress. One study, designed to identify qualities of the multigenerational family that affect the demands of AD caregiving, showed that family members of AD patients derived comfort and benefited from being part of a family. At the same time, family members reported that certain negative aspects of family relationships directly and adversely affected their health and well-being.3 Mental and physical health, financial resources, personal/social/leisure time and satisfaction, and quality of life can all be compromised by being a part of an AD caregiving family. What is particularly distressing about the burden placed on family members is that many of those called upon to provide care are inordinately vulnerable. This is 18S April 27, 1998
THE AMERICAN JOURNAL OF MEDICINEt
due in part to the fact that the AD patient has usually reached an advanced age. Often, caregivers most at risk for negative outcomes are single, widowed, or divorced females, older spouses or children, or members of a lowincome, minority group.4
EFFECTS OF DEMOGRAPHIC TRENDS Family systems recently have undergone many changes.5 Many adults are marrying later in life and are waiting longer to have children. In addition, couples today are generally having fewer children than their parents. The high divorce rate and incidence of remarriage has complicated the family structure. Families may now consist of numerous individuals linked by several common family members. The greater labor force participation of women, as well as the high incidence of divorce, has led to an increase in female heads of households. In addition, people are living longer, although not always without deterioration of their health. There is, therefore, a greater number of people over the age of 85 who are living with chronic illness while caring for someone with AD. These demographic trends all have an impact on AD caregivers. Single parents may face a double financial burden of caring for their children and parents. Multiple marriages may lead to a lack of clearly defined familial roles and conflict over issues related to caregiving. In addition to changes in the family structure, other trends affect the family caring for an individual with AD. There is more long-distance care. Family members are often spread out in different locations and tend to their caregiving responsibilities from afar. Some families may attempt to relocate their parents to their homes or share the responsibilities by moving the parent between homes. Such solutions carry their own risk. The lack of a consistent environment often exacerbates symptoms for the AD patient. Due to their additional personal and professional responsibilities, families will become less able to provide hands-on care, and more likely to become care managers. Also, many families find themselves overwhelmed by their first experience negotiating through the maze of health and social service agencies. Whereas many families are forced to use institutional care because home-care reimbursement is unavailable, most do not relinquish their caregiving responsibilities until very late in the course of the illness. Many remain actively involved via visits to the nursing home resident and regular contact with staff. This is an incredibly demanding task, especially when added to a family member’s existing career and domestic obligations. Alzheimer’s disease family members often experience stress symptoms, such as fatigue, feeling overwhelmed or isolated, anger, fear, guilt, loss of pleasure and motivation, sadness, and grief. Changes in social and leisure participation are particularly distressing to family members. The withdrawal of friends and inability to participate in
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pleasurable activities can be extremely disconcerting and create even deeper feelings of loneliness and isolation.
FAMILY CARE GOALS To combat these stressors, the AD caregiving family must set attainable goals geared toward coping better and then work to achieve those goals. They can include: (1) increasing effectiveness of care and coping strategies; (2) increasing satisfaction with the family member’s preferred level of involvement— often, no matter how much an individual is doing for his or her family member with AD, he or she harbors feelings that it is not enough; (3) decreasing negative consequences on the family; and (4) minimizing family conflicts.
HAZARDS OF DECISION MAKING There are many “hazards,” however, that may complicate or limit a family’s ability to attain these goals, or to effectively make decisions that are in the best interest of the individual with AD. Caregiving family members often feel that they are faced with an unrelenting series of crises that immobilize their capacity for reasoned decisions. Also, caregivers can find themselves bound by old promises (a vow never to place a parent in a home, for example) that later limit their ability to make the appropriate decisions for themselves and the individual with AD. “Chasing ghosts,” such as clinging to perceptions of the person the AD patient once was, can also hamper the decision-making process. Also problematic are family members’ conflicting perceptions and expectations concerning care and the possible outcomes of care. Issues of control and situations where there are simply too few available or affordable choices from which to make decisions are also common hazards.
SUCCESSFUL COPING STRATEGIES Whereas families usually have the ability to quickly “mobilize” to deal with short-term crises, such as acute illness and disability, different mechanisms are needed for long-term, progressive illnesses. To cope effectively with the demands of dementia care, a combination of strategies is needed. Caregivers must learn to change what can be changed through information gathering and direct action. They must also train themselves to cope with their reactions to what cannot be changed (and “intrapsychic” tricks or reframing perspectives—“tomorrow will be better,” “my husband is difficult but he could be worse”) . Practical and creative problem solving, prayer, humor, the dependable support of family and friends, expressive outlets, the ability to forgive others and one’s self, and learning how to economize the personal and family “energy” that is available, for example, can all be effective coping strategies. Flexibility of expectations is extremely important. Expectations placed by the family members on themselves
and the person with AD that cannot be effectively met can lead to feelings of frustration and failure. Knowing when to modify expectations to better fit the AD patient’s needs and the capacity of the family to satisfy them, will help decrease some of the pressures of caregiving. Avoiding or decreasing “Type A” behaviors can also be beneficial; there is no room for time pressure, perfectionism, and rigidity in AD care. ‘‘Good enough for now’’ solutions may be adequate and appropriate. Studies have shown that religious families find their strong faith helpful in coping with their AD caregiving burdens.6 Faith can provide a family with explanations for what is not known or unknowable, and offer the promise of hope for better things in the future. Church or community groups can often provide caregivers with many of the same benefits as support groups, and religious or group rituals can offer reassurance and heal much in the way that meditation or exercise can. Respites or “sabbaticals” from duties as a caregiver can also have a positive therapeutic effect. Learning to take “time out” without being overwhelmed by feelings of guilt can be difficult but also can have a very positive impact on the mental well-being of the caregiver.
WHAT AD FAMILIES WANT TO KNOW As mentioned above, information gathering can be not only of practical value to the caregiving family but can act as an effective coping mechanism. With that in mind, physicians should be prepared for the types of questions they are likely to encounter. These questions can be categorized as the “who,” “what,” “where,” “when,” “why,” and “how” questions. (1) Who: Who specializes in this? Who is at risk? Who pays for this? (2) What: What tests are necessary? What are the effects of other illnesses and medications? What causes AD? What treatments are useful? What can we expect next? What about driving? What about the rest of us? (3) Where: Where should he or she live? Where can he or she travel? Where is it written? Where can I get help? (4) When: When do we take over the finances? When is it dangerous to let him or her live alone? When will he or she no longer know me? When will he or she need a nursing home? (5) Why: Why does this happen to people with no lifestyle risks? Why is he or she so unlike him/herself? Why doesn’t he or she try harder? Why doesn’t he or she trust me? Why doesn’t Medicare cover this? Why don’t I feel better now that he or she is in a nursing home? (6) How: How much is enough? How long will this last? How will we know if it is working?
SUPPORT GROUPS Research has shown the benefit of formal support groups and services for both AD patients and their caregivers.7,8 Support groups can help AD families realize that others are experiencing the same difficulties, as well as provide practical advice on what has and has not worked for others. These
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Table 1. Services for Alzheimer’s Disease Care • • • • • • • • • • • • • • • •
family (Table 1), there is no chronological order of services that caregivers may use; as a result, individuals are often unsure of what services they should be utilizing and when. For example, home health care is not available for everyone; nursing homes and residential programs can often better meet the needs of the person with Alzheimer’s but may not be affordable long term.
Diagnostic/functional assessment Interpretive/educational programs Treatment/research participation options Primary care Financial/legal/insurance options Urgent, acute, subacute, rehabilitative, and hospital care Information/referral/linkage Counseling: cognitive, behavioral, affective Home care Specialty consultations Support options Respite options Security/Safety options/SAFE RETURN Residential/nursing-home services Terminal/hospice/palliative care Bereavement services/altruistic outlets
WHAT FAMILIES WANT FROM PHYSICIANS: THE EIGHT “Rs”
groups are a good source for consumer information and coping models, and also serve as expressive outlets. Positive outcomes derived from support groups include increased knowledge of the illness and services available, as well as decreased feelings of isolation. A growing trend in support group services is toward specialization. In addition to groups for patients, caregivers, couples, and families, support groups are now also based on gender, age, setting of care, and stage of disease. Some employee assistance programs now offer counseling and referral, and guidance can also be found through the visual and print media in the form of documentaries, reference lists, and first-person accounts. Because the debilitating nature of AD makes travel difficult for both the patient and caregiver, support is now available through electronic mail, Internet chat groups, and toll-free numbers, such as those of the Alzheimer’s Association ([800] 272-3900) and the Alzheimer’s Disease Education and Referral Center ([800] 438-4380).
FORMAL SERVICES Studies have shown a reluctance on the part of families to utilize both support and formal services.9 The general reluctance to use such programs is partially based on mistrust of professional and paid services, and a fear of future costs. There is often a delay in use, underutilization, or inappropriate use of paid services because of this. On average, families use many fewer services than recommended by professionals.10 Although family members may feel comfortable turning to physicians for assistance— often out of respect for the position of authority which they perceive physicians to occupy—services such as home-care or respite services are often contacted simply as “last-ditch” efforts to avoid nursing-home placement. Although many of the services offered address the legitimate healthcare needs of the AD patient and his or her 20S April 27, 1998
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As stated previously, the AD caregiving family often looks to the physician for guidance, initially unsure of many other sources of information and assistance. Generally, there are 8 areas about which the family looks to their doctor, or the 8 “Rs”11: (1) “Rx” for active treatment; (2) reliable expert primary medical skills; (3) recognition of family efforts and loss; (4) reassurance of continuity; (5) relevant information concerning their situation; (6) retained family control; (7) reminders (i.e., “There is no perfectly secure environment, etc.”); and (8) referrals to quality, reimbursable, or low-cost services.
CONCLUSIONS As they struggle to cope effectively with their difficulties, relatives of persons with AD must remind themselves that the family has a “problem in living,” and that the family is not necessarily the problem. Family members of AD patients must give themselves permission to be human. It is not uncommon to lose patience with a relative who asks the same question repeatedly. Although a desirable goal, there is no perfectly fair division of family care responsibility. There is also no way always to be in control in an AD caregiving situation; behavioral disturbances are inevitable, no matter how safe, controlled, stimulating, and reassuring the environment. As mentioned earlier, Type A personality characteristics and dementia care do not mix well. There is no all-encompassing, “right” way to care for a spouse or parent with AD, and no one right setting where that care should take place. Individuals respond to different approaches and individual families must determine for themselves, with the aid of the professionals and support services available to them, what is best for their family. Given the burdens of care, however, even small interventions may translate into improvements in the quality of life or confidence of the family caregiver.
REFERENCES 1. Small GW, Rabins PV, Barry PP, Buckholtz NS, Dekosky ST, Ferns SH, Finkel SI, Gwyther LP, Khachaturian ZS, Lebowitz BP, McRae TD, Morris JC, Oakley F, Schneider LS, Streim JE, Sunderland T, Teri LA, Ture LE. Diagnosis and treatment of Alzheimer’s disease and related disorders: consensus statement of the American Association for Geriatric Psychiatry, the Alzheimer’s Association, and the American Geriatrics Society JAMA. 1997;278:1363–1371. 2. Welleford EA, Harkins SW, Taylor JR. Personality changes
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5. 6. 7.
in dementia of the Alzheimer’s type: relations to caregiver personality and burden. Exp Aging Res. 1995;21:295–314. Fisher L, Lieberman MA. Alzheimer’s disease: the impact of the family on spouses, offspring, and inlaws. Fam Process. 1994;33:305–325. Exploding the Myths: Caregiving in America. Washington, DC: House Select Committee on Aging; 1987. US Department of Health, Education, and Welfare publication. Pub. No 99 – 611. Suzman RT. A World without Alzheimer’s Disease: a Dream within Reach. Chicago: Alzheimer’s Association, 1997. Kaye J, Robinson KM. Spirituality among caregivers. Image J Nurs Sch. 1994;26:218 –221. Bass DM, Noelker LS, Rechlin LR. The moderating influence of service use on negative caregiving consequences. J Gerontol B Psychol Sci Soc Sci. 1996;51:S121–S131.
8. Gwyther LP. Service delivery and utilization: research directions and clinical implications. In: Light E, Niederehe G, Lebowitz B, eds. Stress Effects on Family Caregivers and Alzheimer’s patients. New York: Springer, 1994:293– 300. 9. Ganzer C, England SE. Alzheimer’s care and service utilization: generating practice concepts from empirical findings and narratives. Health Soc Work. 1994;19:171– 174. 10. Stone R, Cafferata GL, Sangl J. Caregivers of the frail elderly: a national profile. Gerontologist. 1987;27:616 – 626. 11. Gwyther LP. Care for families facing Alzheimer’s disease. Primary care practice implications from research. In: Khatchaturian ZS, Radebaugh TS, eds. Alzheimer’s Disease: Causes, Diagnosis, Treatment, and Care. Boca Raton, Fla; CRC Press, 1996:323–331.
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