Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Abstract

Objective: Diagnosis of a family member with a memory disorder creates significant psychosocial coping demands for the whole family. The aim of this study was to examine shared experiences of people with memory disorders and their family caregivers during the first years following diagnosis to construct a substantive theory. The study focused on factors related to mutual processes used for managing such life-altering situations.

Methods: A qualitative longitudinal research design informed by grounded theory was used. Experiences shared by eight people with memory disorders and their closest family caregivers were determined using semi-structured interviews (n = 23) in their homes. The study participants were recruited from a memory clinic at a tertiary care hospital.

Results: A core category, ‘Process of accepting memory disorder as part of family life,’ and related categories and subcategories were formulated from the data. The subcategories ‘Acknowledging available qualities and resources’, ‘Seeking meaningful social support’, and ‘Living for today’, were mutual components of the categories ‘Adjusting to altering self,’ and ‘Adapting to a new caregiver role.’ The contents of each subcategory comprise a continuum of positive and negative dimensions of adjustment and distress.

Conclusions: Accepting a memory disorder as part of family life is a mutual process involving concurrent and specific requirements of both people with memory disorders and family caregivers. Acknowledging the potential of the person diagnosed, opportunities for social support, and living for today, reinforce the process of managing life after a memory disorder diagnosis.