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Dementia-friendly communities: The involvement of people living with dementia.

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cam.issuedOnline2022-01-28
dc.contributor.authorMathie, Elspeth
dc.contributor.authorAntony, Arthur
dc.contributor.authorKillett, Anne
dc.contributor.authorDarlington, Nicole
dc.contributor.authorBuckner, Stefanie
dc.contributor.authorLafortune, Louise
dc.contributor.authorMayrhofer, Andrea
dc.contributor.authorDickinson, Angela
dc.contributor.authorWoodward, Michael
dc.contributor.authorGoodman, Claire
dc.contributor.orcidMathie, Elspeth [0000-0002-5871-436X]
dc.contributor.orcidAntony, Arthur [0000-0001-8617-5714]
dc.contributor.orcidKillett, Anne [0000-0003-4080-8365]
dc.contributor.orcidDarlington, Nicole [0000-0002-2505-1256]
dc.contributor.orcidBuckner, Stefanie [0000-0001-6820-7057]
dc.contributor.orcidLafortune, Louise [0000-0002-9018-1217]
dc.contributor.orcidMayrhofer, Andrea [0000-0002-0606-2865]
dc.contributor.orcidGoodman, Claire [0000-0002-8938-4893]
dc.date.accessioned2022-05-16T18:00:22Z
dc.date.available2022-05-16T18:00:22Z
dc.date.issued2022-05
dc.date.updated2022-05-16T18:00:22Z
dc.description.abstractBACKGROUND: Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement. METHODS: This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters. FINDINGS: All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and 'ad hoc' conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs. CONCLUSION: The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.
dc.identifier.doi10.17863/CAM.84616
dc.identifier.eissn1741-2684
dc.identifier.issn1471-3012
dc.identifier.other10.1177_14713012211073200
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/337198
dc.languageen
dc.language.isoeng
dc.publisherSAGE Publications
dc.publisher.urlhttp://dx.doi.org/10.1177/14713012211073200
dc.subjectdementia
dc.subjectdementia friendly communities
dc.subjectinvolvement
dc.subjectpeople living with dementia
dc.subjectpublic engagement
dc.subjectDementia
dc.subjectEngland
dc.subjectFocus Groups
dc.subjectHumans
dc.subjectResearch Design
dc.subjectSurveys and Questionnaires
dc.titleDementia-friendly communities: The involvement of people living with dementia.
dc.typeArticle
prism.endingPage1269
prism.issueIdentifier4
prism.publicationNameDementia (London)
prism.startingPage1250
prism.volume21
pubs.funder-project-idNational Institute for Health Research (NIHR) Policy Research Programme (PRP) (PR-R15-0116-21003)
rioxxterms.freetoread.startdate2022-01-28
rioxxterms.licenseref.startdate2022-01-28
rioxxterms.licenseref.urihttps://creativecommons.org/licenses/by/4.0/
rioxxterms.versionVoR
rioxxterms.versionofrecord10.1177/14713012211073200

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