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'We’re happy as we are': the experience of living with undiagnosed dementia

Henley, Josie, Hillman, Alex ORCID:, Jones, Ian Rees ORCID:, Woods, Bob, MacLeod, Catherine Anne, Pentecost, Claire and Clare, Linda 2023. 'We’re happy as we are': the experience of living with undiagnosed dementia. Ageing and Society 43 (9) , pp. 2041-2066. 10.1017/S0144686X21001495

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It is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the Cognitive Function and Ageing Studies-Wales (CFAS-Wales) cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Centre for Trials Research (CNTRR)
Social Sciences (Includes Criminology and Education)
Wales Institute of Social & Economic Research, Data & Methods (WISERD)
Publisher: Cambridge University Press
ISSN: 0144-686X
Date of First Compliant Deposit: 22 September 2021
Date of Acceptance: 14 September 2021
Last Modified: 12 Nov 2023 21:03

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