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Lookup NU author(s): Claire BamfordORCiD, Dr Alison WheatleyORCiD, Dr Greta BrunskillORCiD, Dr Laura Booi, Dr Louise Allan, Professor Dame Louise Robinson
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Background 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. The aim of this study was to identify the components of post-diagnostic dementia support. Methods We adopted an exploratory 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. 48 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. Results 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 person with dementia or dyad at a particular time. Conclusions 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 countries and care systems.
Author(s): Bamford C, Wheatley A, Brunskill G, Booi L, Allan L, Bannerjee S, Harrison Dening K, Manthorpe J, Robinson L, on behalf of the PriDem study team
Publication type: Article
Publication status: Published
Journal: PLoS ONE
Year: 2021
Volume: 16
Issue: 12
Online publication date: 20/12/2021
Acceptance date: 10/11/2021
Date deposited: 06/12/2021
ISSN (electronic): 1932-6203
Publisher: Public Library of Science
URL: https://doi.org/10.1371/journal.pone.0260506
DOI: 10.1371/journal.pone.0260506
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