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Original Research

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

Czekanski, Kathleen PhD, RN, CNE

AJN The American Journal of Nursing: September 2017 - Volume 117 - Issue 9 - p 24–32
doi: 10.1097/01.NAJ.0000524517.60352.84
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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.

This qualitative study explored the lived experiences of people who transitioned to the role of caregiver for a family member with dementia, with the aim of understanding the caregiver's transition experience, the meaning caregivers attributed to their experience, and strategies they identified as effective in facilitating their transition.

Kathleen Czekanski is the dean of the School of Nursing and Health Sciences at La Salle University, Philadelphia. Contact author: czekanski@lasalle.edu. The author and planners have disclosed no potential conflicts of interest, financial or otherwise.

Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.