At a crossroads in care: the experience of individuals with Down syndrome and dementia

Abstract

The awareness that people with Down syndrome are at risk of dementia at a younger age, even in their forties or fifties, brings to the fore a group previously excluded from research. Literature documents the experiences of people with Down syndrome and, separately, that of people with dementia. This includes knowledge of individual experiences through self-advocacy, inclusion in service development, policy and research, and the drive for a more person-centred way of providing support. We do not have the same knowledge about the experience of individuals who have both Down syndrome and dementia. Research literature suggests that people with Down syndrome are already marginalised before a diagnosis of dementia, due to society’s interpretation of their intellectual disability. The first quantitative stage of this longitudinal, mixed method study demonstrates the awareness of carers and actions taken post-diagnosis, highlighting the social exclusion experienced by people with Down syndrome. The second more substantive, qualitative stage considers factors that impact on the experience of individuals with Down syndrome and dementia. My observation identifies factors that highlight the process of further social and cultural marginalisation after a diagnosis of dementia. Findings are initially based on a thematic analysis of my transcribed data to develop case studies, followed by cross case analysis. Emerging issues from both stages of the research suggest commonality of experience in relation to the lack of a shared diagnosis, lack of recognition of sense of Self or identity, failure to recognise the importance of adapting communication to enable social interaction, a readiness to define a person by their situation rather than as an individual, and my observations of the impact of staff. I suggest that care and support for people with Down syndrome and dementia is at a crossroads, with an absence of shared learning between intellectual disability services and dementia services. I demonstrate how far I have been able to synthesise my approach to methodology and methods of data collection to enable the inclusion of a group previously excluded from research, incorporating both verbal and non-verbal exchanges as dementia progressed. Despite individuals with Down syndrome and dementia not being visible in service development and policy, it has been evidenced that their participation in research is not only possible, it is essential, as this group continues to enjoy a longer life expectancy that brings with it an associated risk of dementia.