Sangam: A Confluence of Knowledge Streams

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

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dc.creator Bamford, C
dc.creator Wheatley, A
dc.creator Brunskill, G
dc.creator Booi, L
dc.creator Allan, L
dc.creator Banerjee, S
dc.creator Harrison Dening, K
dc.creator Manthorpe, J
dc.creator Robinson, L
dc.date 2022-03-04T12:22:44Z
dc.date 2021-12-20
dc.date.accessioned 2022-05-26T21:09:26Z
dc.date.available 2022-05-26T21:09:26Z
dc.identifier 1932-6203
dc.identifier e0260506
dc.identifier http://hdl.handle.net/10026.1/18887
dc.identifier 10.1371/journal.pone.0260506
dc.identifier 1932-6203
dc.identifier.uri http://localhost:8080/xmlui/handle/CUHPOERS/228928
dc.description <jats:sec id="sec001"> <jats:title>Background</jats:title> <jats:p>There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support.</jats:p> </jats:sec> <jats:sec id="sec002"> <jats:title>Methods</jats:title> <jats:p>We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel.</jats:p> </jats:sec> <jats:sec id="sec003"> <jats:title>Results</jats:title> <jats:p>Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time.</jats:p> </jats:sec> <jats:sec id="sec004"> <jats:title>Conclusions</jats:title> <jats:p>Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.</jats:p> </jats:sec>
dc.language en
dc.language en
dc.publisher Public Library of Science
dc.relation ISSN:1932-6203
dc.relation E-ISSN:1932-6203
dc.rights 2022-03-05
dc.rights Not known
dc.title Key components of post-diagnostic support for people with dementia and their carers: A qualitative study
dc.type Journal Article


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