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The Experience of Transitioning to a Caregiving Role for a Family Member with Alzheimer's Disease or Related Dementia

Background: Alzheimer's disease is a chronic, debilitating disease that currently affects an estimated 5.5 million Americans. The majority are being cared for at home by family caregivers, who are known to have higher levels of burden than any other group of caregivers.; Purpose: The purpose of this phenomenological study was to explore the lived experiences of people who transition to the role of caregiver for a family member with Alzheimer's disease or a related dementia.; Methods: The study used purposeful sampling. Eight women and two men (mean age, 66.3 years) participated. Data were collected through in-depth semistructured interviews, along with observational field notes. Data were analyzed using a hermeneutic phenomenological approach.; Results: The average duration of caregiving reported by participants was five years. Seven themes were uncovered: something is wrong; journey to diagnosis: ambiguity and negative emotions; shifting roles and relationships: losses and challenges; seeking knowledge and support: solutions and frustrations; adapting to the topsy-turvy world of caregiving: finding purpose; preserving self without guilt; and finding a way out.; Conclusions: The study findings have implications for nursing education, research, and practice, with participants expressing needs for better communication and access to resources. The findings also suggest the importance of health care planning early in the disease process, and of raising awareness about nurses as a resource for family members

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Key Information

Type of Reference
Jour
Type of Work
Journal article
ISBN/ISSN
1538-7488
Resource Database
Cmedm
Publication Year
2017
Issue Number
9
Journal Titles
The American Journal Of Nursing
Volume Number
117
Start Page
24
End Page
32