Perceptions of change over time in early-stage Alzheimer's disease

Abstract

Emerging models of subjective experience, awareness and coping in early-stage dementia may usefully be enhanced by incorporating a temporal perspective. As an initial step in this direction, we undertook a prospective one-year follow-up of participants with a diagnosis of early-stage Alzheimer's disease whose accounts had contributed to the development of Clare's phenomenological model of awareness incorporating the continuum model of coping in early-stage dementia. All 12 participants from the original study completed a follow-up interview one year later. Interpretative phenomenological analysis was used to identify emergent themes. All participants continued to demonstrate some awareness of difficulties with memory, but individuals varied in their evaluations of the extent and implications of these changes, with the majority tending towards more normalizing explanations. Many were nevertheless making practical adjustments to their activities, and the need to renegotiate relationships was a prominent issue. Subsequently, the data were examined for evidence of the themes identified in the original study, the initial model was reapplied, and changes in individual coping style over time were explored through case study analysis. The range of processes and coping styles observed across participants 12 months earlier was still apparent, with some indication of increased polarization between self-maintaining and self-adjusting styles of coping. A small number of participants showed significant changes in coping style, with changes occurring in both directions. The findings suggest that expression of awareness interacts with coping style, illustrating the need to consider both factors in combination in order to better understand individual expressions of awareness of change.