‘Coming out’ with Alzheimer's disease: Changes in awareness during a psychotherapy group for people with dementia

Abstract

This paper forms part of the second phase of a project looking at those changes that occurred for participants during a series of time-limited psychotherapy groups for people with dementia. Using the Assimilation of Problematic Experiences Scale (APES), the accounts of one participant (Robert) are analyzed across the course of the group. Robert moves from a position in which he wards off awareness that he has dementia of the Alzheimer's type, to being able to joke about having brain changes that are symptomatic of the illness. This change in his discourse about Alzheimer's disease was accompanied by an increase in Robert's levels of affect. However, reflecting on the changes that had occurred for him, Robert commented that before he came to the group he had been frightened, thinking that ‘I’m going crazy … what am I going to be like in another five years?’. For Robert, coming to the group had meant that this fear had been replaced by the knowledge that he was not alone. In the light of the move towards early diagnosis, the importance of this model of change in awareness as a means of increasing understanding of the process of emotional development is discussed. ‘… but I think that a lot of people who I have met who have come out about Alzheimer's were quite shocked because I said that. It did help, it may not have helped others, but I suppose that it helps overcome a feeling of being different.’ Janet, session six.