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Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study

Sally Stapley Orcid Logo, Claire Pentecost Orcid Logo, Alex Hillman, Ian Rees Jones Orcid Logo, Robin Morris Orcid Logo, Catherine Quinn Orcid Logo, Madhumathi Ravi Orcid Logo, Jeanette Thom Orcid Logo, Linda Clare Orcid Logo

Ageing and Society, Pages: 1 - 20

Swansea University Author: Alex Hillman

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DOI (Published version): 10.1017/s0144686x24000333

Abstract

'Living well' is an important concept across national dementia strategies, where qualitative research has contributed to understandings of living well for people with dementia. Longitudinal, qualitative approaches are fewer but can explore potential changes in accounts of living well, psyc...

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Published in: Ageing and Society
ISSN: 0144-686X 1469-1779
Published: Cambridge University Press (CUP) 2025
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URI: https://cronfa.swan.ac.uk/Record/cronfa69989
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spelling 2025-09-03T15:54:06.4570092 v2 69989 2025-07-17 Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study f11d092bdec20565cc6c7ef500084caf Alex Hillman Alex Hillman true false 2025-07-17 SOSS 'Living well' is an important concept across national dementia strategies, where qualitative research has contributed to understandings of living well for people with dementia. Longitudinal, qualitative approaches are fewer but can explore potential changes in accounts of living well, psychological coping and adaptation to dementia, and if or how people with dementia maintain continuity in their lives. The aim of this longitudinal qualitative study was to gauge what is important for 'living well' with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later and analysed using longitudinal thematic analyses. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintain living well over time, where individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising specific areas which had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well over time including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to 'live well'. Journal Article Ageing and Society 0 1 20 Cambridge University Press (CUP) 0144-686X 1469-1779 Alzheimer’s; living well; longitudinal; occupation; qualitative; quality of life; social relationships 4 4 2025 2025-04-04 10.1017/s0144686x24000333 COLLEGE NANME Social Sciences School COLLEGE CODE SOSS Swansea University Another institution paid the OA fee ‘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 and Care 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 the Alzheimer’s Society, grant number 348, AS-PR2-16-001. 2025-09-03T15:54:06.4570092 2025-07-17T10:51:13.0453616 Faculty of Humanities and Social Sciences School of Social Sciences - Criminology, Sociology and Social Policy Sally Stapley 0000-0001-5538-8717 1 Claire Pentecost 0000-0003-2048-5538 2 Alex Hillman 3 Ian Rees Jones 0000-0002-1682-9134 4 Robin Morris 0000-0001-7767-5258 5 Catherine Quinn 0000-0001-9553-853x 6 Madhumathi Ravi 0000-0002-9542-0336 7 Jeanette Thom 0000-0002-6575-3711 8 Linda Clare 0000-0003-3989-5318 9 69989__34785__e05b65a134ed4beaabc8c93afb56982e.pdf 69989.VOR.pdf 2025-07-17T11:31:01.2085693 Output 260942 application/pdf Version of Record true ©The Author(s), 2025. Published by Cambridge University Press. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (CC BY). true eng http://creativecommons.org/licenses/by/4.0
title Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
spellingShingle Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
Alex Hillman
title_short Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
title_full Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
title_fullStr Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
title_full_unstemmed Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
title_sort Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study
author_id_str_mv f11d092bdec20565cc6c7ef500084caf
author_id_fullname_str_mv f11d092bdec20565cc6c7ef500084caf_***_Alex Hillman
author Alex Hillman
author2 Sally Stapley
Claire Pentecost
Alex Hillman
Ian Rees Jones
Robin Morris
Catherine Quinn
Madhumathi Ravi
Jeanette Thom
Linda Clare
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institution Swansea University
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publisher Cambridge University Press (CUP)
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hierarchy_top_title Faculty of Humanities and Social Sciences
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department_str School of Social Sciences - Criminology, Sociology and Social Policy{{{_:::_}}}Faculty of Humanities and Social Sciences{{{_:::_}}}School of Social Sciences - Criminology, Sociology and Social Policy
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description 'Living well' is an important concept across national dementia strategies, where qualitative research has contributed to understandings of living well for people with dementia. Longitudinal, qualitative approaches are fewer but can explore potential changes in accounts of living well, psychological coping and adaptation to dementia, and if or how people with dementia maintain continuity in their lives. The aim of this longitudinal qualitative study was to gauge what is important for 'living well' with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later and analysed using longitudinal thematic analyses. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintain living well over time, where individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising specific areas which had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well over time including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to 'live well'.
published_date 2025-04-04T18:02:02Z
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