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This article was downloaded by: [Harvard Library]On: 07 October 2014, At: 16:42Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH,UK
Journal of Gerontological SocialWorkPublication details, including instructions for authorsand subscription information:http://www.tandfonline.com/loi/wger20
Spousal Caregivers of Early StageAlzheimer's Patients:Sherry M. Cummings PhD aa School of Social Work, University of Georgia, Athens,GA, 30602-7016Published online: 25 Oct 2008.
To cite this article: Sherry M. Cummings PhD (1997) Spousal Caregivers of Early StageAlzheimer's Patients:, Journal of Gerontological Social Work, 26:3-4, 83-98, DOI:10.1300/J083V26N03_07
To link to this article: http://dx.doi.org/10.1300/J083V26N03_07
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Spousal Caregivers of Early Stage Alzheimer's Patients:
A Psychoeducational Support Group Model
Sherry M. Cumrnings, PhD
ABSTRACT. The needs and experiences of carcgivers of persons with early Alzheimer's Discase are often complex and intense. Early carcgivers must adjust and respond to their loved one's increasing deterioration and to significant alterations in their relationship with the care recipient. These challenges are heightened for spousal care- givers who must contend with the dissolution of their primary rela- tionship and with expectations of the future based upon that relation- ship. Currently, there is a dearth of available services for early
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caregivers. This article describes a psychoeducational support model for caregiving spouses of early Alzheimer's patients. This model has been used with 10 spousal caregiver and pattent groups over the past five years. The format of the groups are outlined. The major themes that have consistently emerged for the caregiving spouses are dis- cussed and case examples are given. Recommendation for those work- ing with early caregiving spouses are discussed, [Article copies available for a fee from The Haworth Document Delivety Service: 1-800-342-9678. E-mail address: [email protected]]
The number of elderly persons in the United States has been steadily rising. Although it is estimated there were only 3 million persons 65 and older in 1900, this number will rise to 52 million by the ycar 2020. As a
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Sherry M. Cumrnings is affiliated with the School of Social Work, University of Georgia.
Address correspondence to Sherry M. Cummings, School of Social Work, University of Georgia, Athens, GA 30602-7016.
Journal of Gerontological Social Work, Vol. 26(3/4) 1996 D 1996 by The Haworth Press, Inc. All rights reserved. 83
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result, the number of persons with Alzheimer's Disease (AD), a disease which primarily strikes elders, is also on the rise. A recent epidemiological study reported that 10% of all persons over age 65 have probable AD and that this number increases to 47% for those 85 years and over (Darnay, 1994).
It is well-known that the dcvastating impact of AD is felt not only by those who have the illness but also by those who care for them. As a result of their duties, many caregivers become socially isolated, experience in- creased burden (Eisdorfer, 1991; Pearlin, 1994; Williamson & Schulz, 1993) and depression (Rosenthal, Sulman & Marshall, 1993; Schulz & Williamson, 1994), and suffcr a decrease in physical well-being (Barusch, 1988; Kiecolt-Glaser & Glaser, 1994).
The experiences and needs of caregivers vary according to the care recipient's stage of illness (Chenoweth & Spence, 1986; Dippel, 1991; Lichtenberg & Barth, 1990). Most research studies, however, have not addressed the issue of differential caregiver needs based on thc stage of illness. In addition, the vast majority of programs and services for persons with AD and their caregivers focus on those in middle to later stages. Therefore, family members of persons with early Alzheimer's often struggle to carry out their caregiving responsibilities with little or no help and support.
According to national surveys of caregivers, one-third to one-half of all caregivers are spouses (Oflice of Technology Assessment, 1987, 1989; Stone, Cafferata & Sangl, 1987). Spouses provide higher levels of support to their ill partners than do other caregiving family members, averaging almost 75 hourslweek in caregiving activities (Johnson, 1983; Pruchno, 1990). The strain of this role is heightened by the fact that spouses receive only minimal support from other family members and the formal service system (O'Bryant, Straw & Meddaugh, 1990).
Spousal caregivers of early stage Alzheimer's patients often struggle with the dawning awareness of their partner's illness and the challenge of taking on increasing roles and responsibilities in isolation. Thc gradual loss of a lifelong mate coupled with the demand of learning new skills can produce profound grief and intense stress. The purpose of this article is to highlight the experiences and challenges faced by spousal caregivers of early stage Alzheimer's patients and to describe a psychoeducational sup- port group model created to address the needs of this special population.
EARLY STAGE CAREGIVING
The symptoms of early stage AD are very subtle. Problems with short- term memory, difficulties with instrumental activities of daily living, such
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Sherry M. Cummings 85
as banking and grocery shopping, and minor personality changes usually develop very slowly. Because of this, family members' experiences with early Alzheimer's are oflcn confusing and frustrating. Early symptoms may be misinterpreted and attributed to other causes such as a recent illness, depression, or laziness. Difficulty in understanding and coming to terms with early symptoms can be further exacerbated by an unresponsive medical system. Studies reveal that caregivers often have difficulty con- vincing the doctor that their family member is actually ill (Morgan & Zhao, 1993). In addition, family members report that when a diagnosis is finally made, they receive incomplete information and that medical per- sonnel tend to focus on the hopeless nature of the illness (Haley, Clair & Saulsbeny, 1992). Therefore, caregivers' earliest attempts at coping with the reality and consequences of AD are often compromised by inadequate knowledge concerning the nature and course of the disease and a dearth of information about symptom management.
After a diagnosis of AD is received, caregivers are faced with the chal- lenge of integrating and coming to terms with the reality of this illness. Denial of the seriousncss and the degenerative nature of their family member's illness is common (Coughlan, 1993; Dippel, 1991). Caregivers often have dificulty accepting the involuntary nature of the symptoms and translating information about the progressive nature of the disease into concrete bchaviors (Chenoweth & Spencer, 1986; Tune, Lucas-Baustein & Rovner, 1988). As a result, family members often experience frustration and anger. When this anger overflows and is directed at the care recipicnt, the caregiver's anger is further complicated by feelings of guilt and shame. Caregivers' abilities to work through denial vary greatly. While some are able to quickly grasp the reality and implications of the illness, for many others acceptance comes only after a prolonged struggle of many months or many years.
During the early stage, caregivers must begin to take over emotional and practical responsibility for daily tasks. Some caregivers become ovcr involved in an attempt to control the situation and their family member's deteriorating cognitive and functional ability (Teusink & Mahler, 1984). Other caregivers feel overwhelmed by the demand of caring for their relative while taking on new roles such as handling the finances, managing household repairs, and cooking. Eventually family members are con- fronted with the reality that they are not able to prevent their loved one's deterioration or the resultant increasing demands with which they are faced. This realization ushers in the experience of grief.
Caregivers of persons with early Alzheimer's are faced with the begin- ning of intense loss and the awareness of losses yet to come. This anticipa-
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tory grief constitutes one of the major components of the early caregiver's experience (Morgan & Laing, 1991). Caregivers' attempts to manage this grief are often complicated by the lack of outside support (Doka, 1989). During the early stage, persons with Alzheimer's are socially appropriate and are often adept at masking their symptoms for short periods of time. Therefore, friends, neighbors and others not living directly with the ill person are often unaware that a problem exists. Caregivers frequently choose not to inform others of their family member's illness in order to protect their family member from others' adverse reactions. As a result, early stage caregivers often struggle with their experience of loss and feelings of grief in isolation.
SPOUSAL CAREGIVERS
The majority of care received by manied Alzheimer's patients is pro- vided by their spouses (Pruchno, 1990). Caregiving spouses are faced with unique physical and emotional challenges which color their experience and differentiate it from that of other Alzheimer's caregivers. Since most spouses are aged themselves, the challenge of providing comprehensive care is heightened by the caregiver's own health problems and physical limitations. Pruchno and Potashnik (1989) report that spouses have a higher incidence of illness but a lower utilization rate of health care ser- vices than do other caregivers. Studies have also found that spousal care- givers have higher levels of depression, anxiety, and negative affect, and greater likelihood of psychotropic use (Cohen et al., 1990; Clipp & George, 1993). Most spousal caregivers are women. Research indicates that wives providing care to partners with AD have higher levels of psy- chiatric symptomatology than do other familial caregivers (Cohen et al., 1990). Clearly, spouses of persons afflicted with AD endure a complicated and strenuous carcgiving career which poses heightened threats to their physical and psychological well-being.
The loss and grief endured by spousal caregivers begins very early on in the disease process and has a complicated course (Wasow & Coons, 1987). 9 r l y symptoms of AD include difficulty in maintaining substan- tive conversations and decreased insight and empathy. Such deficits have a profound impact upon the marital relationship. Companionship and emo- tional support previously provided by the ill partner begin to fade. Ex- pectations of a sharcd future are destroyed. Spouses grieve the loss of their partners and of the central relationship in their lives:
As the disease symptoms become more pronounced and the demand for care mounts, the lives of spousal caregivers become increasingly restricted.
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Sherv M. Cummings 87
Outside involvement and activities diminish as more and more time and energy are devoted to the caregiving role. Opportunities for social interac- tion also decrease. Often the person with AD no longer feels comfortable in gatherings where they are unable to remember names or follow con- versations. Well spouses often retreat from such social activities in attempt to protect their partner and themselves from potential embarrassment. As a result, a severely restricted social environment may result.
Given their ill partner's decreasing abilities, the resultant demand for increased care, and shrinking opportunities for outside interaction, spousal caregivers may become consumed in their caregiving role. Caregivers who are not able to redefine their relationship-image or whose self-image be- comes threatened by feelings of inadequacy and failure, are prone to greater depressive symptomatology and crises (Lewin & Lundervold, 1990; Skaff & Pearlin, 1992). Spousal caregivers are faced with the continual challenge of readjusting their understanding of their relationship with their partner and their participation in that relationship. Deterioration in cogni- tive ability often renders the Alzheimer's victim unable to appreciate or positively respond to the care provided by their mates. Because feedback from their ill spouse is often the primary input received by the caregiver, it is necessary that the spousal caregiver develop the ability to maintain a positive self-image and create personal meaning in the midst of strain and loss.
PSYCHOEDUCATIONAL SUPPORT GROUP MODEL
The Psychoeducational Support Group Model for Early Alzheimer's Patients and their Spouses was developed at Wesley Woods Geriatric Hospital at Emory University in 1990. The development of the model grew out of the realization that only a handful of programs existed in the country to assist self-aware dementia patients and their caregivers with the painfid emotional and practical challenges inherent in a degenerative cog- nitive disorder. Early stage Alzheimer's patients were among those ex- amined and treated at the Emory University Neurobehavioral Clinic. Among these clients, a special need was exhibited by early stage patients accompanied by their spouses. These couples struggle not only with the devastating news of an Alzheimer's diagnosis but also with the slow and confusing disintegration of a long-standing primary relationship. Denial, anger, and a lack of understanding regarding the nature and course of the disease are common. Dificulty in coping with the reality of the illness is fucher exacerbated by growing social isolation and the slow dissolution of the couple's previous communication and coping patterns. Psychoeduca-
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tional support groups for early stage Alzheimer's patients and their spouses were. therefore. established in order to: (1) increase caregivers' and pa- tients' understanding of the symptoms a'nh course of Ab; (2) enha;lce caregivers' ability to accept the reality and implications of the disease; (3) assist caregivers in reformulating their relationship-image; (4) enhance caregivers' repertoire of coping skills; and (5) facilitate caregivcrs' early grieving process.
Croup Structure and Format
The Early Alzheimer's Psychoeducational Support Groups are closed and time-limited. Each of the eight weekly sessions run for 90 minutes. Two eight-week programs are conducted per year. During the past five years, ten such groups have been held. Spousal caregivers and their ill partners attend concurrent but separate groups. The inclusion of a patient group was seen as essential due to the inability of caregiving spouses to leave their partners at home unattended. It also provided the patients an opportunity to discuss the impact of their illness with others suffering from early cognitive impairment. Additionally, the inclusion of both well and ill spouses allows for the development of strategies aimed at enhancing spou- sal communication. Both groups are colead by a social worker-nurse team.
Both the spousal group and the patient group follow a similar agenda over the eight-week period. Weekly topics include: overview of AD, changing roles, changes in the marital relationship, enhancing commu- nication, planning for the future, and stress reduction. At the end of each session the two groups come together to briefly review what was dis- cussed in each group. This enables the participants to gain a better under- standing of how those in the other group approached and responded to the topic discussed. Homework is assigned which invites the couples to jointly explore on a dceper level the topics introduced in the weekly session.
The first meeting consists of a joint session that includes all caregivers, ill spouses and group leaders. The leaders provide an overview of the purpose and format of the groups. A primary goal of the initial session is to reduce participants' anxiety and create an atmosphere of acceptance and safety. Both members of each couple are asked to introduce themselves and describe their reasons for attending the group and their hopes for the group. During the introductions, the leaders provide continued encourage- ment and support. The use of appropriate humor throughout the session is extremely helpful in reducing tension and embarrassment.
For each of the remaining sessions the caregiver and patient groups meet separately. An overview of AD is provided during the second rneet-
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ing. This includes a basic explanation of brain functioning and the impact of AD on the brain: The types of memory (immediate recall, short-tcrm, and long-term), and how each is affccted, are describcd. Changes in other cognitive abilities such as insight, judgement, language skills, problem- solvine. skills, conceptualization, and visospatial ability are also reviewed. ~astl~:the course of'the discase is discussed.
During the third and fourth sessions, shifting roles and changes in thc marital relationship are discussed. Leaders help the caregivers to realisti- cally assess the changes that have occurrcd in their partners and in their own lives since the onset of AD. Decreases in the ill spouse's ability to perform practical tasks and fulfill emotional roles are explored. Increased responsibilities, declining companionship, and the availability of social support are discusscd, and caregivers' emotional responses to these changes are examined. Spccial attcntion is given throughout these sessions to the acknowledgcment and validation of caregiver grief.
The fifth session is devoted to the discussion of communication be- tween the caregivers and their spouses. The leaders describe the impact of AD on the paticnt's ability to process information, track conversations, follow simple and complex conunands, and initiate verbal communica- tion. Caregivcrs examine their style of communication with their spouse and evaluate this stylc in light of their spouse's decreasing abilities. Effec- tive methods of communicating with persons with AD are described and discusscd.
The sixth session, involving planning for the future, may take different forms depending upon the nceds of the participants. During carlier ses- sions, the participants' knowledge of available resources, familiarity with MedicareIMcdicaid, and levcl of prcparation for the future are assesscd. Caregivcrs are also asked to indicate their greatest concerns regarding planning for the future. This information then helps the leaders to develop a session shaped to meet the needs of the particular group. The topics most frequently covered includc: ( 1 ) scrvices provided by home-hcalth carc agcncies, assisted living facilities, personal care homes, and nursing homes, (2) MedicarclMedicaid, (3) living wills, financial and medical power of attorney, guardianship, and (4) planning assistancc provided by geriatric case managers, financial planners, and lawyers. Lists of resources are provided for the caregivers' future use. Participants are also given the option of having an elder law attorney attend the meeting to review, in &ore dcpth, relcvant legal issues.
Thc seventh session focuses on stress rcduction. Caregivers examinc and describe their usual methods of coping with difficult situations involv- ing the care recipient. Thc leaders help the participants to cvaluate the
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effectiveness of these methods in achieving the desired outcomes and managing caregiver stress. Each participant is asked to identify particular stress reduction strategies that are cffective for them and barriers that may prevent their utilization of these strategies. Methods of confronting these barriers are then discussed. Particular techniques such as progressive muscle relaxation and diaphragmatic breathing are demonstrated.
During the last session, issues related to closure are discussed. Caregiv- ers are often fearfd about returning to caregiving without weekly support. Caregivers are encouraged to maintain contact with one another and par- ticipants have banded together to form ongoing support groups. (For in- formation about group strategies and techniques and copies of the group agenda and session handouts, contact the author.)
Due to the participants' reluctance to discontinue the groups after the eight weeks have ended, monthly "alumni" groups were established for both the well and ill spouses. The "alumni" groups have been now operat- ing for 4-112 years.
Group Portict)onts
Participants are drawn primarily from clients of the Emory University Neurobehavioral Memory Assessment Clinic. After an interested couple is identified, the ill spouse is interviewed and given the Folstein Mini Mental Status Examination (Folstein, Folstein & McHugh, 1975) to assist in de- termining their suitability for the program. Thus far, ages have ranged from 47 to 83 for the well spouses and 54 to 83 for the ill spouses. Sixty-two percent of the caregivers have been women and thirty-eight percent men. The number of years that participating couples have been married ranges from 2 years to 53 years.
Themes
During the course of the program, definite themes have emerged in the spousal caregiver group. The consistency of thcse themes in all groups over the past five years suggests common emotional challenges faced by caregivers whose spouses and marital relationships are undergoing funda- mental and painful alterations during the early stage of Alzheimer's Dis- ease process.
Acceptance of the Diagnosis
Although the spouse of every participating caregiver has received a diagnosis of AD, difficulty accepting the reality of the diagnosis is not
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uncommon. Some spouses insist that, while a diagnosis has been made, they do not see any significant change in their spouse. At times, carcgivers eschew discussion of AD and focus instead on other problcms their spouse is experiencing and over which there is more potential for control. By concentrating on their spouse's medical problems, for example, or on the difficulty adjusting to a recent move, caregivers attempt to temporarily stave off anxiety and fear inherent in acknowledging a loved one's pro- gressive cognitive disorder. Acceptance of the diagnosis entails two steps: first, acknowledging that cognitive deterioration has occurred and, second, apprehending AD as the cause.
Case Example
Mrs. Fell became concerned about a change in her husband's behavior shortly after his retirement. Previously a meticulous and orderly man, his attention to grooming slightly declined. Although puzzled by this change in years of established behavior, she attributcd this deviation to a new post-retirement routine. With time, howcver, Mr. Fcll also began to have additional difficulties, such as losing tools and problems writing down telephone messages. Mrs. Fell took her husband to a physician who re- ferred them to an eye specialist and also to the Memory Assessment Clinic. He was diagnosed with AD and the couple was referred to the Early Alzheimer's Support Group Program. At the first session, Mrs. Fell reported that she wasn't sure she and her husband belonged in the group. The physician, she said, had not been able to give them a definitive diag- nosis of AD. She spoke of her husband's adjustment to retirement and of a "hole" in his cye found by the specialist. She was hopeful that if this problem could be successfully resolved and his vision restored, his diffi- culties with grooming and losing objects would also resolve.
Accepting the Implications
The challenge of accepting the diagnosis is followed by that of accept- ing the implications of the prognosis. Once again, two steps are involved. The first is acknowledging that the symptoms of AD extend beyond memory impairment and include deterioration of additional cognitive abil- ities. At times, spousal caregivers speak openly of their partner's memory impairment while ignoring the presence of other symptoms. Even in the early stages, persons with AD suffer a decrease in their ability to appre- hend the feelings and reactions of others. Additionally, judgement, prob- lem-solving, and planning abilities diminish. Recogn~zing these impair-
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ments forces the well spouse to acknowledge their need to further redefine long-standing roles and responsibilities.
The second step is to accept the progressive nature of AD. After rees- tablishing emotional equilibrium threatened by the diagnosis of AD, and reorganizing daily patterns to accommodate initial cognitive decline, many caregivers enter a phase of illusory stability. During this time, caregivers frequently report that they have successfully adapted to the situation and state their belief that they and their spouse will manage successfully "as long as things don't change." Spouses who are not able to acknowledge that "things will change" and, with time, change drastically, are likely to delay planning for the future. Thus, when further cognitive and functional decline do occur, they are less prepared on both an emotional and practical level.
Case Example
Both Mr. and Mrs. Winters had long careers as teachers. When, at the age of 72, Mrs. Wintcrs was diagnosed with AD, her husband was heart- broken but not surprised. At the support group meetings he told the other spouses that he had recognized very early symptoms almost a year before a diagnosis was finally made. He lamented the fact that his wife had grown more quiet and passive but noted that many of her abilities were still intact. He told the group that in order to accommodate these changes and to prevent his wife from losing further ability due to inactivity, he developed a comprehensive daily schedule for the couple. Mr. Winters expressed his belief that by teaching his wife new modified routines better suited to her current abilities, he would be able to create new patterns which his wife would then be able to maintain "indefinitely."
Redefining the Relationship-Image
One of the most painful struggles encountered by caregiving spouses is the dissolution of a previously stable marital relationship. During the early stages of AD, spouses are confronted with the loss of a once familiar "we-ness" which previously defined their identity as a couple (Gwyther, 1990). At times, caregivers have difliculty reconceptualizing a new rela- tionship in light of their partner's growing impairment. This leads some caregivers to maintain expectations for the relationship which can no longer be fulfilled. When expectations clash with reality, carcgivers often respond with anger, fear, and grief.
One of the relationship changes which induces a profound sense of
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Sherry M. Cummings 93
grief is loss of companionship and emotional support. During the early stage of AD, afflicted persons begin losing the ability to initiate and engage in meaningful conversations. Couples who routinely discussed family, local, or national affairs, or who kept one another informed of daily activities and news find that such communication is no longer possible. For this reason caregiving spouses often experience a growing loneliness at a time when others are not yet aware that any problem exists. In addi- tion, persons with early stage AD suffer a decrease in insight and a corre- sponding decline in the ability to empathize. The ability to understand another's fcelings and appropriately respond is fhdamental to healthy relationships. As these capabilities slowly dissolve, caregiving spouses are often left feeling emotionally abandoned. Spousal caregivers are con- fronted with the challenge of letting go of previous understandings and expectations of their marital relationship. They must reformulate their relationship-image to accord with the new reality of their partner's grow- ing cognitive deficits.
Case Example
Mr. Sandborn was a dignified and soft-spoken man who had successful- ly run a family-owned business for 15 years. He was diagnosed with AD shortly after his 58th birthday. He was still going into work each day, although his duties had been significantly restricted, when the couple began attending the Early Alzheimer's Support Group meetings. During group meetings, Mrs. Sandborn reported that the two had,always had a very harmonious relationship and rarely disagreed during their 32-year marriage. Shc noted, however, that her husband had begun to make uncharacteristically sharp and critical remarks. She was confused and hurt by his behavior. She attempted to discuss the situation with him to find out the reason for his critical comments. Her husband was not able to explain his behavior, however. Next, she attempted to change her own behavior to be more accommodating. Thktactic also failed. During the group mect- ings, other spouses told Mrs. Sandborn that their partners had also exhib- ited personality changes. Mrs. Sandborn, however, had great difficulty accepting the fact that her husband's behavior was due to AD and was not something that she could eventually "figure out" and reverse. The couplc attended the monthly "alumni group" meetings after the initial eight-week sessions were completed. Over several months, as her husband's impair- ment in other areas became more pronounced, Mrs. Sandborn sadly ac- knowledged that her relationship with her husband had undergone irrevers- ible changes and that their previous relationship had disappeared forever.
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Grief
As is evident from the above discussion, spousal caregivers experience a series of significant losses during the early stage of their mate's illness. The loss of a oartner. of a companion. of future plans, of freedom and access to outside activities and interests are all included. Anticipatory grief is often intense during this stage as each new decline has not only immedi- ate consequences but also 6reshadows additional and more-profound future losses. Additionally, caregivers of persons with early AD are often faced with disenfranchised grief, grief that is not "openly acknowledged, publically mourned, or socially supported" (Doka, 1989, p. 4). During the early stage of AD, friends and family members who do not have daily meaningful contact with the person may have no indication of the Alz- heimer's diagnosis. Furthermore, spouses are often reluctant to inform others of their partner's illness. Some caregivers report that they believe informing others would be a violation of their spouse's privacy. Other caregivers note that they wish to protect their children from painful news. As a result, these spousal caregivers often grieve in isolation or with minimal support.
Case Example
Mr. and Mrs. Cole were both in their mid-70s when Mr. Cole was diagnosed with AD. In addition to memory impairment, Mrs. Cole re- ported that her husband's symptoms included increased lethargy and a lack of initiative. She had trouble getting him out of bed in the morning. The two had participated in a morning "walking club" for years but now she had to insist that he get up and join the group. Once with the group, hc was friendly and jovial. However, shortly after their return home, Mr. Cole would return to bed. Mrs. Cole complained that she felt lonely even though her husband was with her every day. She also spoke angrily of the fact that with others her husband was lively, but when at home, he re- treated. Shc felt that he had begun to desert her. When she made vague remarks to some of the walking club members that her husband was "having some difficulties," they downplayed hcr remarks, stating that he seemed fine.
RECOMMENDATIONS
When working with spousal caregivers of persons with early AD, it is important to recognize that the process of understanding, accepting, and
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coming to terms with the demands of the illness may be long and slow. It is also essential to realize that the caregiver is faced not only with the task of providing care but with the emotional challenge of losing their primary relationship and future expectations based upon that relationship. Social workers can play a pivotal role in helping spousal caregivers make the painful transition during this early stage from an equal partncr in a marital relationship to a care provider.
The first step is to assess the well spouse's ability to understand and incorporate the reality of the Alzheimer's diagnosis. The clinician should not assume that bccause the spouse has been informed of the Alzheimer's diagnosis, she has accepted the diagnosis or its implications. Providing the caregiver with information about the disease or recommendations for the future will do no good, if the caregiver is unable to hear or accept this information. Caregiving spouses may be able to integrate only small pieces of information at a time. For this reason, effective communication with the caregiver often requires continued reiteration and processing over time. During the early stage of AD the well spouse does not need detailed information about the course of the illness. It is crucial, however, that they understand that AD is progressive and degenerative. Follow-up appoint- ments or home visits may be necessary to help the caregiver accept and integratc information about the reality and course of their partner's illness.
The spouse's ability to accept the reality of the Alzheimer's diagnosis may be seriously compromised by other family membcrs' denial of the symptoms. Those family members who do not have daily contact with the patient may bc unaware of the subtle changes that have occurred. At times, such family members accuse the well spouse of being overly anxious and critical, and refuse to accept that an accurate diagnosis has been made. Such sentiment can undermine the caregiver's nascent acceptance of the illness. Therefore, it is important to assess the ability, not only of the spouse, but also of family members, to accept the diagnosis. The issue of othcr family member's reactions should first be addressed with the well spouse. If the spouse indicates that disagreement or conflict does exist, initiating a family conference to include all relevant family members and the diagnosing physician can be extremely helpful. The physician's role at the conference is to review tests that were completed, to explain the results of the tests, and to answer questions about the symptoms and course of the disease. The social worker's role is to help the family process this informa- tion, express feelings and grief related to the diagnosis, and begin formu- lating a basic care plan.
Even caregivers who havc accepted the reality of their spouse's AD may have great difficulty in letting go of their previous marital relation-
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ship. At times, well spouses hold onto old expectations of their partner. Caregivers' expressions of anger or hurt may be warning signs that they have not yet adjusted their understanding of the marital relationship. Ef- fective intervention includes continued education and counseling, as need- ed, to hclp the caregiver recognize and accept their spouse's behavior as symptomatic of the disease process rathcr than a result of a willful dcci- sion. Linking such spouses with other early AD caregivers allows the spouse to recognize in other's stories a similar decline in their loved one's behavior and relationship participation. This, in turn, enables the caregiver to begin the process of acknowledging and expressing their grief.
CONCLUSION
Caregiving for persons with early AD is an endeavor which has re- ceived insufficient attention from researchers and program developers. However, the needs experienced by caregivers at this early stage are often complex and intense. The challenges of the early caregiving experience are often heightened by a dearth of outside supports and services. Early caregiving spouses are confronted with additional challenges as they struggle to understand and accept the gradual deterioration of their marital relation- ship and their expectations of the fhture based upon that relationship. Social workers can play a crucial role in assisting this underserved popula- tion in effectively adjusting to the demands of early stage caregiving and, thus, preparing the way for a healthier caregiving career.
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