Making sense of a diagnosis of Alzheimer's disease : partners' experiences

Abstract

Objectives This study aimed to explore the personal experiences and meanings that people develop in response to their partner being diagnosed with Alzheimer's disease, and how these inform the ways in which they cope with and manage their situation in the early stages. Method In-depth interviews were conducted with four women whose partners had received a diagnosis of early-stage Alzheimer's disease from specialist services within the past six months. Interpretative Phenomenological Analysis was used to identify themes running within their accounts. Results Three key themes emerged from the analysis: `Receiving confirmation of a diagnosis of Alzheimer's disease', `Making sense of the diagnosis' and "Staying on an even keel'. `Receiving confirmation of a diagnosis ofAlzheinzer's disease' came at the end of a chain of events for participants. By the time they had been through the process of searching for an explanation for their husband's cognitive difficulties and consulted with professionals, most had half-expecteda diagnosis, although it provoked some strong emotional responsesT. hey described a range of strategies to 'make sense of the diagnosis', including making social comparisons, interpreting professional and social discourses about Alzheimer's disease, making comparisons with previous phases of their life, and attempting to understand and empathise with their partner's experience. The core theme that emerged from participants' accounts was an emphasis on 'staying on an even keel' and protecting their partners' sense of competence and selfhood. They engaged in a range of idiosyncratic intra-personal and interpersonal adjustments to achieve this goal, including re-evaluating their life story and redefining themselves or their partners as `old', re-defining social boundaries to avoid social stigma, and subtly taking on an increasingly powerful position within the relationship in a way that their partners would not be aware of. Conclusions The results are discussed in relation to current clinical debates about the ethics and practicalities of diagnostic disclosure as well as how services can better engage with and respond to the psychosocial needs of family caregivers in the early stages of dementia.