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

Published online by Cambridge University Press:  16 November 2021

Josie Henley Open the ORCID record for Josie Henley [Opens in a new window] ,
Alexandra Hillman Open the ORCID record for Alexandra Hillman [Opens in a new window] ,
Ian Rees Jones Open the ORCID record for Ian Rees Jones [Opens in a new window] ,
Bob Woods Open the ORCID record for Bob Woods [Opens in a new window] ,
Catherine Anne MacLeod Open the ORCID record for Catherine Anne MacLeod [Opens in a new window] ,
Claire Pentecost Open the ORCID record for Claire Pentecost [Opens in a new window]  and
Linda Clare Open the ORCID record for Linda Clare [Opens in a new window]
Josie Henley
Affiliation:
Centre for Trials Research, College of Biomedical and Life Sciences, Cardiff University, Cardiff, UK
Alexandra Hillman*
Affiliation:
Department of Criminology, Sociology, and Social Policy in the School of Social Sciences, Swansea University, Swansea, UK
Ian Rees Jones
Affiliation:
WISERD – Wales Institute of Social & Economic Research, & Data, Cardiff University, Cardiff, UK
Bob Woods
Affiliation:
Dementia Services Development Centre Wales, School of Health Sciences, Bangor University, Bangor, UK
Catherine Anne MacLeod
Affiliation:
Dementia Services Development Centre Wales, School of Health Sciences, Bangor University, Bangor, UK
Claire Pentecost
Affiliation:
REACH: The Centre for Research in Ageing and Cognitive Health, Alzheimer's Society Centre of Excellence, University of Exeter Medical School, Exeter, UK
Linda Clare
Affiliation:
REACH: The Centre for Research in Ageing and Cognitive Health, Alzheimer's Society Centre of Excellence, University of Exeter Medical School, Exeter, UK NIHR Applied Research Collaboration South-West Peninsula, University of Exeter, Exeter, UK
*
*Corresponding author. Email: a.e.hillman@swansea.ac.uk
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Abstract

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.

Keywords

dementiaundiagnosed dementiaservice non-useolder adultsfamily care-givers
Type
Article
Information
Ageing & Society , Volume 43 , Issue 9 , September 2023 , pp. 2041 - 2066
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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