Yes / Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. METHODS: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. RESULTS: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. DISCUSSION: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk. / This work was supported by the Alzheimer’s Society (UK) and was carried out within the UCL Alzheimer’s Society Centre of Excellence for Independence at home, NIDUS (New Interventions in Dementia Study) programme (Alzheimer’s Society Centre of Excellence grant 330). This project is also part-funded funded by The National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC).
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/18151 |
| Date | 21 October 2020 |
| Creators | Rapaport, P., Burton, A., Leverton, M., Herat-Gunaratne, R., Beresford-Dent, Jules, Lord, Kathryn, Downs, Murna G., Boex, S., Horsley, R., Giebel, C., Cooper, C. |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, Published version |
| Rights | © The Author(s). 2020 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
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