The value of support groups for caregivers of a patient with Alzheimer's disease: A family system's perspective




Stanley, Renee

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The purpose of this study was two-fold. First, to examine, within a framework of family systems theory, whether or not primary caregivers of a patient with Alzheimer's disease perceive support groups to be a valuable means for assisting them in dealing with their feelings of stress and burden; stress related symptoms; family relationships; and coping and adapting strategies. Second, to evaluate how this decision has been influenced by their particular family system, such as, type of boundaries: permeable, moderate, or rigid; and family rules and regulations, including those .for role expectations. A qualititative study was conducted with 20 primary caregivers of patients with Alzheimer's disease, who are currently attending various support groups in Dallas, Texas, and the greater Dallas area. The caregivers were siblings, daughters, and spouses of the patients. They were all from a similar socio-economic background. Data were analyzed according to qualitative methods (Bogden & Taylor, 1984), in order to develop concepts, insights, and understandings from patterns which emerged. The information gained, substantiated by the responses of the participants in in-depth interviews, revealed various patterns and themes. When re-analyzed within a framework of family systems theory, it was found that the family system played a major role in influencing the caregivers as follows. Those participitants who had described moderate boundaries perceived the support group as a valuable place for expressing feelings; sharing common experiences; receiving emotional support; and obtaining information on any topic pertaining to the patient. Caregivers who had reported rigid boundaries, related a tendency to resist outside assistance in any way, at times even from members of their own family. They stated a preference to keep the patient at horne, often under extremely difficult circumstances, and at tremendous costs to themselves. They consistently denied any personal needs, or the need for emotional support. This carried through to, and influenced, their perception of the value derived from attending a support group. Caregivers, who had reported extremely permeable boundaries, related that other family members tended to drift away, leaving the caregiver to feel "dumped on," and unsupported. Family relationships among this group of caregivers were often reported as conflictual, and they typically related their desire to seek the assistance of outside resources as much as possible. They were more open in expressing their feelings, and voiced their anger and resentment at other family members, as well as anger and impatience with the patient. Family rules and regulations, including those with regard to role expectations, were also found to influence the way in which the caregivers responded. It was concluded that: (a) support groups are not necessarily perceived as valuable by all caregivers, (b) some aspects are perceived as being more beneficial than others, (c) whether or not a person perceives a support group, or certain aspects of the group to be valuable, is influenced by their particular family background.



Care of the sick, Home nursing, Alzheimer's disease, Families