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

Josie Henley Orcid Logo, Alex Hillman, Ian Rees Jones Orcid Logo, Bob Woods Orcid Logo, Catherine Anne MacLeod Orcid Logo, Claire Pentecost Orcid Logo, Linda Clare Orcid Logo

Ageing and Society, Volume: 43, Issue: 9, Pages: 2041 - 2066

Swansea University Author: Alex Hillman

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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...

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Published in: Ageing and Society
ISSN: 0144-686X 1469-1779
Published: Cambridge University Press (CUP) 2023
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URI: https://cronfa.swan.ac.uk/Record/cronfa58445
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spelling v2 58445 2021-10-21 ‘We're happy as we are’: the experience of living with possible undiagnosed dementia f11d092bdec20565cc6c7ef500084caf Alex Hillman Alex Hillman true false 2021-10-21 CSSP 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. Journal Article Ageing and Society 43 9 2041 2066 Cambridge University Press (CUP) 0144-686X 1469-1779 Dementia; undiagnosed dementia; service non-use; older adults; family care-givers 30 9 2023 2023-09-30 10.1017/s0144686x21001495 http://dx.doi.org/10.1017/s0144686x21001495 COLLEGE NANME Criminology, Sociology and Social Policy COLLEGE CODE CSSP Swansea University ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001. The CFAS Wales study was supported by the ESRC (RES-060-25-0060) and the Higher Education Funding Council for Wales as ‘Maintaining function and well-being in later life: a longitudinal cohort study’. 2023-09-05T15:43:25.2854390 2021-10-21T14:50:09.0561831 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Josie Henley 0000-0002-2709-900x 1 Alex Hillman 2 Ian Rees Jones 0000-0002-1682-9134 3 Bob Woods 0000-0002-6781-651x 4 Catherine Anne MacLeod 0000-0002-9314-7380 5 Claire Pentecost 0000-0003-2048-5538 6 Linda Clare 0000-0003-3989-5318 7 58445__21536__f2f60ac2f9ca4f37a92bdcd0eac0b063.pdf 58445.pdf 2021-11-15T13:35:29.6639266 Output 219175 application/pdf Accepted Manuscript true Released under the terms of a Creative Commons Attribution Non-Commercial No Derivatives License (CC-BY-NC-ND) true eng https://creativecommons.org/licenses/by-nc-nd/4.0/
title ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
spellingShingle ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
Alex Hillman
title_short ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
title_full ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
title_fullStr ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
title_full_unstemmed ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
title_sort ‘We're happy as we are’: the experience of living with possible undiagnosed dementia
author_id_str_mv f11d092bdec20565cc6c7ef500084caf
author_id_fullname_str_mv f11d092bdec20565cc6c7ef500084caf_***_Alex Hillman
author Alex Hillman
author2 Josie Henley
Alex Hillman
Ian Rees Jones
Bob Woods
Catherine Anne MacLeod
Claire Pentecost
Linda Clare
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description 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.
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