The experiences of daughters caring for a parent with Alzheimer's disease in the home: A phenomenological study

Abstract

Background An estimated 5.8 million Americans of all ages are living with Alzheimer’s Disease (AD) dementia as of 2019, which includes an estimated 5.6 million people age 65 and older. Of the 5.8 million people who have AD dementia, 81% are age 75 or older. Alzheimer’s disease is the 6th leading cause of death in the United States. By 2050, the number of people age 65 and older with AD dementia may grow to a projected 13.8 million, barring the development of medical breakthroughs to prevent, slow, or cure AD. Method The study used purposeful and snowball sampling. 12 daughters participated. Data were collected through in‐depth semi structured interviews. Data were analyzed using a Colaizzi’s (1978) descriptive phenomenological approach. Result Caregiving years ranged from 1‐10 years with a mean of 5 years. The average duration of caregiving reported by participants was 5 years. Six themes were uncovered: (a) Where Are You When I Need You? (b) Safety First (c) I Don’t Know What to Say or How to Say It (d) They Are Beautiful People, but They Aren’t Trained (e) Letting Go of Who They Were and (f) It Affects Every Area of My Life. Conclusion The study findings have implications for nursing education, research, and practice, and indicate a need for better support for daughters caring for their parent with AD in the home. They are struggling as they manage their parents’ care.