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.

dc.contributor.author	Rapaport, P.
dc.contributor.author	Burton, A.
dc.contributor.author	Leverton, M.
dc.contributor.author	Herat-Gunaratne, R.
dc.contributor.author	Beresford-Dent, Jules
dc.contributor.author	Lord, Kathryn
dc.contributor.author	Downs, Murna G.
dc.contributor.author	Boex, S.
dc.contributor.author	Horsley, R.
dc.contributor.author	Giebel, C.
dc.contributor.author	Cooper, C.
dc.date.accessioned	2020-10-21T11:05:17Z
dc.date.accessioned	2020-11-04T14:38:33Z
dc.date.available	2020-10-21T11:05:17Z
dc.date.available	2020-11-04T14:38:33Z
dc.date.issued	2020-01
dc.identifier.citation	Rapaport P, Burton A, Leverton M et al (2020) "I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives. BMC Geriatrics. 20: 5.
dc.identifier.uri	http://hdl.handle.net/10454/18151
dc.description	Yes
dc.description.abstract	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.
dc.description.sponsorship	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).
dc.language.iso	en	en
dc.rights	© 2020 The Authors. This is an Open Access article distributed under the Creative Commons CC-BY license (https://creativecommons.org/licenses/by/4.0/)
dc.subject	Dementia
dc.subject	Psychosocial intervention
dc.subject	Qualitative
dc.subject	Independence
dc.subject	Support systems
dc.subject	Functioning
dc.title	"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives
dc.status.refereed	Yes
dc.date.application	2020-01-03
dc.type	Article
dc.type.version	Published version
dc.identifier.doi	https://doi.org/10.1186/s12877-019-1406-6
dc.rights.license	CC-BY
dc.date.updated	2020-10-21T10:05:29Z
refterms.dateFOA	2020-11-04T14:39:12Z
dc.openaccess.status	openAccess
dc.date.accepted	2019-12-22