Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.

<h4>Background</h4>There are 900,000 people with dementia in England and Wales. Existing models of post-diagnostic support are unsustainable and unaffordable. The PriDem programme developed a new model of primary care-based dementia care, whereby a Clinical Dementia Lead (CDL) would faci...

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Main Authors: Emily Spencer, Katie Flanagan, Marie Poole, Federica D'Andrea, Maud Hevink, Jane Wilcock, Kate Walters, Louise Robinson, Greta Rait, Sarah Griffiths, PriDem Study project team
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2025-01-01
Series:PLoS ONE
Online Access:https://doi.org/10.1371/journal.pone.0317811
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author Emily Spencer
Katie Flanagan
Marie Poole
Federica D'Andrea
Maud Hevink
Jane Wilcock
Kate Walters
Louise Robinson
Greta Rait
Sarah Griffiths
PriDem Study project team
author_facet Emily Spencer
Katie Flanagan
Marie Poole
Federica D'Andrea
Maud Hevink
Jane Wilcock
Kate Walters
Louise Robinson
Greta Rait
Sarah Griffiths
PriDem Study project team
author_sort Emily Spencer
collection DOAJ
description <h4>Background</h4>There are 900,000 people with dementia in England and Wales. Existing models of post-diagnostic support are unsustainable and unaffordable. The PriDem programme developed a new model of primary care-based dementia care, whereby a Clinical Dementia Lead (CDL) would facilitate systems-level change.<h4>Aim</h4>To assess barriers and facilitators to implementation of the PriDem intervention.<h4>Methods</h4>7 general practices participated in a qualitative process evaluation, as part of the mixed-methods feasibility and implementation study. Practices were located within 4 Primary Care Networks in the North East and South East of England. 26 healthcare professionals, 14 people with dementia and 16 carers linked to participating general practices participated in semi-structured individual and small group interviews. Additional qualitative data were generated through nonparticipant observations and researcher fieldnotes from CDL intervention supervision sessions. Data were analysed using abductive codebook thematic analysis informed by Normalisation Process Theory (NPT).<h4>Results</h4>Six themes were generated: 1) The rocky ground of primary care; 2) The power of people; 3) Tension between adaptability and fidelity; 4) Challenging the status quo: reimagining care planning; 5) One size doesn't fit all; 6) Positive effects on people and systems: towards sustainability. Through the lens of NPT we can understand the contextual challenges facing primary care, the mechanisms (e.g., work undertaken by individuals) to overcome those challenges, as well as the potential outcomes of such an approach, in terms of longer-term sustainability of changes made.<h4>Conclusions</h4>Despite the pressures facing primary care within England and Wales, meaningful change can be made to practice in the care of people with dementia. The presence of motivated and engaged staff are critical to implementation, as is ensuring understanding of complex interventions, so that fidelity can be maintained. People with dementia and carers benefitted from improved care systems. Commissioners should consider the benefits of a CDL-led approach.
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spelling doaj-art-b179416b906a4fcf83ee90a5e0a579d82025-08-20T03:16:46ZengPublic Library of Science (PLoS)PLoS ONE1932-62032025-01-01203e031781110.1371/journal.pone.0317811Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.Emily SpencerKatie FlanaganMarie PooleFederica D'AndreaMaud HevinkJane WilcockKate WaltersLouise RobinsonGreta RaitSarah GriffithsPriDem Study project team<h4>Background</h4>There are 900,000 people with dementia in England and Wales. Existing models of post-diagnostic support are unsustainable and unaffordable. The PriDem programme developed a new model of primary care-based dementia care, whereby a Clinical Dementia Lead (CDL) would facilitate systems-level change.<h4>Aim</h4>To assess barriers and facilitators to implementation of the PriDem intervention.<h4>Methods</h4>7 general practices participated in a qualitative process evaluation, as part of the mixed-methods feasibility and implementation study. Practices were located within 4 Primary Care Networks in the North East and South East of England. 26 healthcare professionals, 14 people with dementia and 16 carers linked to participating general practices participated in semi-structured individual and small group interviews. Additional qualitative data were generated through nonparticipant observations and researcher fieldnotes from CDL intervention supervision sessions. Data were analysed using abductive codebook thematic analysis informed by Normalisation Process Theory (NPT).<h4>Results</h4>Six themes were generated: 1) The rocky ground of primary care; 2) The power of people; 3) Tension between adaptability and fidelity; 4) Challenging the status quo: reimagining care planning; 5) One size doesn't fit all; 6) Positive effects on people and systems: towards sustainability. Through the lens of NPT we can understand the contextual challenges facing primary care, the mechanisms (e.g., work undertaken by individuals) to overcome those challenges, as well as the potential outcomes of such an approach, in terms of longer-term sustainability of changes made.<h4>Conclusions</h4>Despite the pressures facing primary care within England and Wales, meaningful change can be made to practice in the care of people with dementia. The presence of motivated and engaged staff are critical to implementation, as is ensuring understanding of complex interventions, so that fidelity can be maintained. People with dementia and carers benefitted from improved care systems. Commissioners should consider the benefits of a CDL-led approach.https://doi.org/10.1371/journal.pone.0317811
spellingShingle Emily Spencer
Katie Flanagan
Marie Poole
Federica D'Andrea
Maud Hevink
Jane Wilcock
Kate Walters
Louise Robinson
Greta Rait
Sarah Griffiths
PriDem Study project team
Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.
PLoS ONE
title Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.
title_full Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.
title_fullStr Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.
title_full_unstemmed Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.
title_short Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study.
title_sort delivering systems level change to improve post diagnostic dementia support qualitative findings from the pridem study
url https://doi.org/10.1371/journal.pone.0317811
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