“We’re happy as we are”: the experience of living with possible undiagnosed dementia.

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It is estimated that a third of people in the United Kingdom (UK) 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 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.

Keywords

  • dementia, undiagnosed dementia, service non-use, older adults, family care-givers
Original languageEnglish
Pages (from-to)2041 - 2066
Number of pages26
JournalAgeing and Society
Volume43
Issue number9
Early online date16 Nov 2021
DOIs
Publication statusPublished - Sept 2023

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