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Lookup NU author(s): Dr Marie PooleORCiD, Maud Hevink, Professor Dame Louise Robinson
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Copyright: © 2025 Spencer et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Background: 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. Aim: To assess barriers and facilitators to implementation of the PriDem intervention. Methods 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). Results 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. Conclusions: 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.
Author(s): Spencer E, Flanagan K, Poole M, D'Andrea F, Hevink M, Wilcock J, Walters K, Robinson L, Rait G, Griffiths S, Burns A, Evans E, King D, Knapp M, Lewins RD, Banerjee S, Manthorpe J, Allen L, Tucker S, Wittenberg R
Publication type: Article
Publication status: Published
Journal: PLoS ONE
Year: 2025
Volume: 20
Online publication date: 28/03/2025
Acceptance date: 06/01/2025
Date deposited: 14/04/2025
ISSN (electronic): 1932-6203
Publisher: Public Library of Science
URL: https://doi.org/10.1371/journal.pone.0317811
DOI: 10.1371/journal.pone.0317811
Data Access Statement: Ethical approval for this study, as provided by Wales REC 4 of the National Research Ethics Service (21/WA/0267), prohibits us from sharing the full data. Extensive pseudonymised excerpts of data relevant to the analysis have been provided within the paper. While ethical approval is in place to share excerpts of pseudonymised data within published works, the nature of the data mean that transcripts being made available in their entirety could risk participants becoming identifiable. Data being made available in this way would also violate the agreement to which participants consented. Queries relating to data access can be addressed to the Clinical Trials Unit of the UCL Research Department of Primary Care and Population Health via priment@ucl.ac.uk.
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