Experiences of Early and Late-Onset Alzheimer's Disease: Perceptions of Stigma and Future Outlook

Abstract

Diagnosis of Alzheimer’s disease is encouraged as a first step towards people planning for their future with the condition. Despite the proposed benefits of diagnosis, it is also widely recognised that Alzheimer’s disease can expose people to stigma. Therefore, this thesis explores the relationship between stigma and future outlook, from the perspective of people affected by early and late-onset Alzheimer’s disease. In order to recognise the physicality of the condition and how psychological and social factors influence experiences, a biopsychosocial perspective is employed throughout. People with Alzheimer’s disease (n=15 people with late-onset, 7 people with early-onset) and their supporters (n=22) completed questionnaires about perceived stigma. This was followed by 14 interviews with a subsample of participants, which explored stigma and future outlook in more depth. Perceived stigma reporting across participants was low in the questionnaires; whereas interviews revealed higher levels of stigma with people discussing mixed, unpredictable reactions from a range of sources. Participants expressed awareness of the unpredictable nature of their futures with the condition. The subsequent lack of control was managed through focusing on ‘one day at a time’ and avoiding looking too far ahead. Across reflections on stigma and future outlook there was a deliberate focus on positive experiences for people affected by early and late-onset Alzheimer’s disease. The similar management of experiences across participants minimised possible age-based differences. These findings are supported by socioemotional selectivity theory, which suggests people are motivated to maintain positive emotional states when facing ‘time-limiting’ conditions irrespective of age. The research suggests people’s experiences of stigma and future outlook interact, with stigma-driven assumptions about the future affecting how people manage their daily lives. The avoidance of looking ahead suggests that policy which encourages future planning should consider its utility and explore ways of helping people to manage both exposure to stigma, and planning for the future, whilst focusing on daily living.