Living within a limited freedom
: the perceptions and experiences of early dementia from the perspectives of people with the diagnosis and the diagnosticians

  • Dorothy Weaks

Student thesis: Doctoral Thesis


This thesis explores the impact of an early diagnosis of dementia on the person receiving that diagnosis and also on medical practitioners delivering the diagnosis, with the aim of developing a new understanding of what happens in the first six months of the post-diagnostic period. This study draws on a social constructionist perspective and utilises a reflexive ethnographic case study methodology to situate the experience of the person with the diagnosis within the context of everyday social relationships. A critical review of research into the process of giving a diagnosis, and the subjective experiences of people with dementia, is provided. Data were collected from five participants who had been diagnosed with Alzheimer’s disease, their family members, and 19 doctors involved in treatment. The results of the study highlight the complexity of the diagnostic task for doctors, the immediate experiences of people with dementia in the post-diagnostic period, and the key therapeutic tasks and processes involved in supporting enduring relationships during this time. In addition, the findings of the study draw attention to the importance of “telling” the diagnosis as a means of sustaining a positive sense of self.

The evidence generated by this study demonstrates that people with supportive social interactions can engage in positive strategies and resist the social stigma attached to the experience of dementia. For those without access to positive social interactions the implications are more negative and they are likely to struggle with the inability to integrate the diagnosis and its effects into their everyday lives. The implications of these findings for the provision of post-diagnostic counselling for people with dementia are discussed. This thesis offers an evidence base from which to develop policy and practice guidance around the disclosing of a diagnosis of dementia and the delivery of support required to ensure that people with early dementia can have the opportunity to develop and experience a valued social identity.
Date of AwardMay 2006
Original languageEnglish
SponsorsNHS Tayside
SupervisorJohn McLeod (Supervisor)

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