‘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 For Robert, coming to the group had meant that this fear had been replaced by the knowledge that he was not alone.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.

Acknowledgements

We would like to thank all those people who took part in the groups and the research, their caregivers, friends and relatives who supported our work. We would also like to thank Elizabeth Bartlett, Jane House and Sandy Preen, Kirsty Thorne and Jennifer Peak, Pat Lysaght and Liz Young, Suzanne Davis and Anna Littlechild for all their hard work in facilitating the groups. We would like to acknowledge the work of Andrea Hirons, Jo Cook and Sarah Rogers who gave us their time and support to analyze the sequence of problematic experiences. In addition, many other people have contributed to the project, and are due thanks: in particular Deirdre Sutton-Smith for her valuable supervision, Linda Clare, Mike Bender and Ann Marshall for their helpful comments, Gordon Taylor for his advice on statistics and to the team, behind the scenes, at Dementia Voice for their support. Finally, we would also like to thank the three anonymous referees for their comments, Bill Stiles for his encouragement and David Newman and Nigel Beail for giving us permission to use their table.