Family Caregiving Experiences with Alzheimer's Disease: A Collective Case Study

This collective case study was designed to explore the perspectives of families who are involved in caring for someone with Alzheimer's disease and the cognitive impairment it entails. The collective design (i.e., extension of the study to multiple cases) facilitated understanding and interpretation of these phenomena associated with family caregiving experiences with Alzheimer's disease through not only within-case but also cross-case analyses. Advances in health care and medical technology have resulted in increased life expectancy, which means more people are expected to live longer. Parallel to these predictions for increases in the aging population over the next 50 years, the demand for community and family resources for elder caregiving is expected to increase, creating a need to explore the array of caregiving resources available to support the needs of frail elders. Especially important to explore are the contributions of families to the caregiving process. The inductive research process used for this study involved listening to the stories of four Alzheimer's families by means of personal, in-depth interviews with multiple family members. To make sense of the rich narrative data that were gathered, the family was used as the unit of analysis. Systematic qualitative analyses were conducted for each family, using a constant comparative process beginning with local integration of the data and continuing through the production of case reports. Finally, the analyses were extended to interpretation of cross-case observations. The data revealed family processes and patterns related to the caregiving situations in these families, and thematic elements were identified within families as well as across families.

Families shared their experiences related to the critical issues identified in the caregiving literature -- decision making, relationship changes, and stress -- and the themes that emerged provided valuable insights regarding the overall challenges and rewards of family caregiving experiences with Alzheimer's disease. These families were using creativity and humor to find ways to cope with the impact of the elder care giving process on roles and relationships, and they were influenced by intergenerational legacies with an emphasis primarily on either connection or conflict. Themes that emerged across families included protectiveness as integral to the decision-making processes and intergenerational legacies primarily of either connection or conflict in family relationships in general. The families' perceptions of relational issues and experiences of loss associated with the Alzheimer's disease process were influenced by their perceptions of ambiguity. Stressful caregiving events were perceived as either overwhelming burden or opportunity for relational growth and development. The most stressful times in the caregiving process were the transitions required in the nature of care giving as the needs of the care recipient changed and, thus, the demands on caregivers changed.

Because formal resources simply may not be available or affordable to meet the elder caregiving demand during the next 50 years, family science professionals need to consider strategies to help preserve and nurture the informal resources of family and friends. The present study offered the opportunities to gain perspective about some of the resources on which these families had drawn as they faced the perceived challenges and rewards of being involved with a complex and potentially very demanding caregiving process.