From 'needing to know' to 'needing not to know more': an interpretative phenomenological analysis of couples' experiences with early-onset Alzheimer's disease

Abstract

Objectives: To explore the experiences and adjustment modes of couples during the period between the initial signs of the Alzheimer's disease (AD) and the years following diagnosis, particularly in the case of early-onset AD.

Design: A dyadic interpretative phenomenological analysis was conducted with married couples in which one member of each couple received a diagnosis of probable early-onset AD (before 65 years of age).

Participants: Sixteen young couples, followed by the National Reference Centre for Young Persons with AD, agreed to participate. For seven of the couples, the caregiver was a woman. The mean age was 57.4 (SD = 4.2) for the caregivers and 57.3 (SD = 4.1) for the persons with AD.

Methods: The semi-structured interviews were conducted in the couples' homes. Each interview was conducted with both spouses to capture their interactions in the context of individual and shared experiences.

Results: Two higher-order themes emerged from the analyses: the 'need to know' and, after the diagnosis, the 'need not to know more'. Indeed, the first signs mark the beginning of a period of doubt and a search for understanding. This pursuit of knowledge progresses to the recognition of more intense and severe signs that encourage couples to seek medical attention. Both reassuring and destabilising, the diagnosis is a breaking point that modifies how the changes and painful effects associated with disease are experienced. Couples employ strategies to minimise their suffering and consequently their knowledge about the disease.

Conclusions: These results show that the couples oscillate between the need to know and the fear of knowing. To protect themselves, they use strategies to reduce their suffering and to distance the disease. The use of these avoidance strategies indicates that certain times in the course of disease management are less appropriate for couples to accept the assistance offered by formal caregivers.

Keywords: Alzheimer's disease; acceptance; caregiving; dyadic interviews; qualitative analysis.