Identity and perceptions of quality of life in Alzheimer's disease

Abstract

Background: With life expectancy on the rise and the baby boomer generation growing older, Alzheimer's disease (AD) will affect more individuals and families than ever before. Therefore, it is imperative that healthcare providers identify the objective and perceived factors which positively and negatively affect the experience of progressing through AD.

Aim: The goal of this exploratory qualitative research is to begin to develop an in-depth description of the perceptions related to life satisfaction in early-to mid-AD from the patient and caregiver perspectives.

Methods: A convenience sample of four community-dwelling AD patients and caregivers were recruited from a local Alzheimer's Association support group. Semi-structured interviews were conducted together with participants and caregivers.

Results: The major findings of this study uncovered a process by which 1) changes in activity occur in response to the diagnosis 2) dyads discover new ways in which to mutually adapt and cope and 3) the person with dementia remains meaningfully engaged in their lives with a generally positive perception of quality of life (QoL).

Conclusions: These preliminary findings are a promising line of research and have implications for Alzheimer's patients, their families, and person-centered care. By accounting for individual levels of baseline engagement and taking each patient's perspective into account, nurses have the ability to identify individual changes over time and positively impact the patient's QoL. Further studies with larger and more diverse samples are needed to expand upon this preliminary framework.

Keywords: Alzheimer's disease; Engagement; Identity; Meaningful activities; Quality of life.