First Advisor

David L. Morgan

Term of Graduation

Spring 1992

Date of Publication

6-1992

Document Type

Dissertation

Degree Name

Doctor of Philosophy (Ph.D.) in Urban Studies

Department

Urban Studies and Planning

Language

English

Subjects

Caregivers, Alzheimer's disease -- Patients -- Home care, Alzheimer's disease -- Patients -- Long-term care

DOI

10.15760/etd.3220

Physical Description

1 online resource (4, vii, 169 pages)

Abstract

Elderly people with irreversible cognitive declines such as Alzheimer's Disease (AD) make many demands on those who must care for them, whether those caregivers are family members or the paid staff of nursing homes. When family members no longer have the capacity to meet these demands, a move to a nursing home or other formal care facility becomes the only solution. Such a shift does not, however, mean the end of family caregiving. Instead, the family's caregiving activities must be integrated with the ongoing efforts of the formal care staff. Currently, relatively little is known about 1) what families experience in making that shift and 2) the relationship between family caregivers and paid staff in formal care settings.

Recognizing this as a time of transition for these family caregivers, three research questions were identified: 1) What do family caregivers to AD individuals experience as they shift their caregiving from home to formal care settings? 2) How does caregiving in formal care differ from caregiving at home?, and 3) How do family caregivers perceive the relationships that develop between families and formal care staff? Specific attention was also paid to the experiences of both spouses and adult children.

A qualitative approach provides an especially useful methodology. Grounding the study in the world and experiences of caregivers is not only appropriate for increasing knowledge but also practical for exploring new areas.

Two specific bodies of data were investigated. First, transcripts of a series of 30 focus groups with 179 caregivers who were providing care either at home or in formal care settings were analyzed. Second, ten follow-up interviews were done with 12 caregivers who had previously been involved in the focus groups while they were providing care at home and who had since placed their family member in formal care.

There comes a time to make the decision that results in the transition to formal care. Both spouses and adult children overwhelmingly identified physical exhaustion and often emotional exhaustion as the pervasive common theme. After reaching this state, the caregivers identified turning points that had contributed to the placement decision. While the literature has often pointed to the importance of crises in caregiving decisions, the findings of this study, while not negating this, also call attention to the pivotal nature of events. These kinds of events turn out to be more like turning points than crises.

Caregivers in this study identified five themes that were influential in their decision-making process. In order of their importance to the caregivers, they were: events, the health care system, caregiver care receiver relationship, support, and options and availability. By themselves, these factors did not necessarily predict placement but, in combination, there was a profound effect leading to placement. Themes of family and surviving remained consistent throughout all phases of the transition to formal care.

A male spouse caregiver was more likely to make a decision for placement following a turning point event that centered on an incontinence problem, while a female spouse caregiver was more often moved to action by an AD safety issue. The health care system was usually a negative influence and served to delay the placement decision. Within the caregiver-care receiver relationship, the influence of past experiences and perceptions was extremely powerful, but support did not receive the degree of influence that the caregiving literature has suggested. Finally, even if a family had its care receiver's name on a waiting list, it was rare that an opening was available at the time of need.

A real paradox happens at the time of the placement process. Caregivers are "trying to hold on while letting go." Immediately, family caregivers noted shifts in three major areas: control, involvement and personal reorganization. They noted an intense "roller coaster" effect. Most often their first mention was of guilt. Caregivers found the new experience of confronting a unit of AD residents an overwhelming beginning experience.

In reflecting on the evolving process of participating in formal care, caregivers frequently noted the development of a caregiving relationship with staff. The individuals whom the family caregivers mentioned most often were the aides. Even though a complex organizational environment exists in a nursing home, family caregivers expect sensitive and professional behavior toward not only the resident but also toward themselves. Their bottom line was that staff delivered quality care, which they equated with caring about the resident rather than merely taking care of them.

The findings from this study have implications for theory development, family caregivers, formal care staff, and health care policy.

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Persistent Identifier

http://archives.pdx.edu/ds/psu/18575

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