The Lived Experience of Early-Stage Alzheimer’s Disease: A Three-Year Longitudinal Phenomenological Case Study

Abstract

The purpose of this study was to explore how one person experienced the early years of dementia as she was living through the pre-clinical and early clinical stages of Alzheimer’s disease. Interviews were held on four occasions over a period of three years. The data were analyzed using the descriptive phenomenological psychological method, in which the researcher approached the data from a caring perspective. The lived experience of early-stage Alzheimer’s disease showed to be a complex transitional phenomenon that involves a dynamic process of personal adjustment. The process is set in motion as the participant receives the diagnosis and will eventually lead her towards a state of increased openness and receptiveness toward the disease. The results describe this process as it unfolds in the context of the overall experience, and the various adjustments that the participant undertakes. Some reflections concerning the plausible needs of patients with early-stage Alzheimer’s disease are included in the discussion.

Expressions of Sense of Self Among Individuals With Alzheimer’s Disease

“…Several of our participants expressed a fear of behaving improperly. Similar fears have previously been described (Corner & Bond, 2004;Hedman et al, 2013;Robinson et al, 2012).…”

“…A literature review revealed that people with AD use various coping strategies to address these perceived changes (De Boer et al, 2007;Roger et al, 2014). People with AD can include altered attributes and new experiences with AD when constructing Self 2 (Caddell & Clare, 2011;Sabat, 2003).…”

“…In studies of hoped for and feared attributes (Markus & Nurius, 1986), people with AD were found to hope for wrong diagnoses and the discovery of a cure for AD (Clare, 2002). Individuals worried about increasing memory loss and becoming a burden to their family (Robinson, Giorgi, & Ekman, 2012;Ryan, Bannister, & Anas, 2009), which could result in transfer to a nursing home (Fjelltun, Henriksen, Norberg, Gilje, & Normann, 2009). The fear of increasing memory loss could also prompt people with AD to avoid thinking about the future (Hedman et al, 2013).…”

Experiences of living with dementia: qualitative content analysis of semi‐structured interviews

“…Studies from Canada, the UK, and Sweden have shown that people with dementia felt guilt and shame for being a burden on their loved ones (Gillies , Robinson et al . , Ward‐Griffin et al . ).…”

Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies

“…These adjustments are necessary for a shift in the personal attitude toward the disease, where the participant moves from a state where intense efforts are made to resist and manage the disease to a state characterized by feelings of acceptance and reconciliation. (researcher; Robinson et al, 2012) That is my motto now. We all have only today.…”