The Experience of Transitioning to the Caregiving Role for a Family Member with Alzheimer\u27s Disease or a Related Dementia

Alzheimer\u27s disease is a chronic, debilitating disease that currently affects approximately 5.1 million Americans (Alzheimer\u27s Association 2007). The majority of these individuals are being cared for at home by family caregivers who are known to suffer from more depression and burden than any other group of caregivers. The purpose of this hermeneutic phenomenological study was to explore the lived experience of transitioning to the role of caregiver for a family member with Alzheimer\u27s disease or a related dementia. The study followed purposeful sampling and eight women and two men with a mean age of 66.3 participated in the study. These caregivers reported being in the caregiving role for an average of 5 years. In depth semi-structured interviews along with observation field notes were the sources of data collection. Data were analyzed using the hermeneutic phenomenological approach based on the Utrecht School of Phenomenology (Cohen, Kahn, and Steeves, 2000). Seven themes were uncovered through data analysis including (a) something is wrong; (b) a journey to diagnosis: ambiguity and negative emotions; (c) shifting roles and relationships: losses and challenges; (d) seeking knowledge and support: solutions and frustrations; (d) adapting to the topsy-turvy world of caregiving: finding purpose; (e) preserving self without guilt; and (e) finding a way out. Findings have implications for nursing curricula and practice as participants expressed a need for opportunities for communication and access to resources. The findings also suggest the need for health care planning early in the disease process. Policy implications include the need for public education on dementia and expanded coverage for family leave, respite care, and adult day programs. Further research is recommended to explore the experiences of caregivers during the early diagnosis period and the ethics and patterns of health care decision-making