‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services

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There is growing interest in eliciting the views of younger people with dementia (i.e. those under 65 years of age) within health and social care research. The often erroneous view that these individuals are not capable of expressing their views and experiences has now been seriously challenged. The present paper draws on the findings from 14 qualitative in-depth interviews with younger people with dementia conducted in the South-west of England, and considers some of the issues involved in interviewing people with dementia. Purposive and snowballing techniques were used to recruit participants. Data were transcribed and subjected to comparative textual analysis to index, code and analyse the data for emergent themes. Four major themes emerged: (1) the general experience of having dementia; (2) dementia diagnosis; (3) the importance of age; and (4) risk and danger issues. The results indicate that the majority of participants were articulate and insightful about their experiences and needs. The present paper concludes by arguing that the challenge for health and social care professionals is to engage with and consult such individuals about their experiences and what they want from dementia care services, and the authors consider some of the issues involved in interviewing people with dementia.

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