Development and evaluation of personalised post-diagnostic dementia support based in primary care: the D-PACT research programme

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Background Dementia affects nearly 1 million people in the United Kingdom and their unpaid carers physically, psychologically, socially and economically, highlighting that both need support. Post-diagnostic support is recognised as inadequate globally. In England, it is fragmented or absent apart from primary care – leaving many feeling unsupported as the condition progresses. The Dementia PersonAlised Care Team research programme began in 2018 to address evidence gaps on the effectiveness of dementia support roles and what constitutes ‘good’ support. Objective Dementia PersonAlised Care Team aimed to develop and evaluate an intervention comprising dementia support workers based in primary care, supporting people with moderate to severe dementia and their carers. Phase 1 focused on intervention development and feasibility testing. Phase 2 evaluated the dementia support workers’ value and impact. Our Peer Research Group contributed to the design, analysis and interpretation of data in both phases. Design and methods Phase 1 employed a realist approach to develop theory, the intervention and practitioner support package. This was informed by literature, consulting experts by experience, academics and practitioners and a formative evaluation. A pilot cluster randomised controlled trial tested the feasibility of recruitment, outcome measures and eligibility criteria. Phase 2 included a realist longitudinal mixed-methods evaluation to determine what worked, for whom and in what circumstances. High-volume qualitative data included realist interviews with participants with dementia and carers at two time points, interviews with dementia support workers and general practitioner staff/other practitioners, observations, dementia support worker case notes and reflections, and medical records. Quantitative measures of health- and quality of life-related outcomes, experience of care, carer well-being and support, and resource use were collected at three time points. A mixed-methods integration was conducted following separate qualitative, quantitative and economic analyses. Setting and participants Phase 1 recruited participants with dementia (some without capacity) and their carers (if present) from general practitioner practices in rural Devon and Greater Manchester. In phase 2, participants were recruited from practices in rural and coastal areas in Devon (high deprivation) and urban Greater Manchester (including areas with higher representation of South Asian communities). Intervention The Dementia PersonAlised Care Team intervention, developed in phase 1, delivers personalised, proactive and integrated dementia care via trained dementia support workers embedded in primary care. Drawing on coaching principles, dementia support workers empower decision-making and address psychosocial, health and practical needs through flexible, ongoing support. Support is tailored to individuals’ and carers’ needs. Consented participants were offered 12 months of support, which is flexibly stepped up or down based on need. Findings In phase 1, the Dementia PersonAlised Care Team intervention was tested in 10 general practitioner practices. COVID-19 necessitated switching to remote intervention delivery, recruitment and data collection. Intervention and recruitment strategy (including capacity assessment) were acceptable. However, only 51% (56/110) of the recruitment target was met, making a fully powered cluster randomised controlled trial unfeasible within the funding envelope. A mixed-methods longitudinal realist approach was therefore adopted for the evaluation (phase 2). In phase 2, 126 PwD and 121 carers were recruited from 13 practices – reaching 70% (126/180) of the recruitment target. Retention in the intervention was high (79%). However, participation in follow-up data collection was poor for all quantitative measures, for example, only 22% (28/126) of participants completed the Engagement and Independence in Dementia Questionnaire at 9–12 months. The longitudinal realist analysis identified four areas of positive impact linked to dementia support worker actions: living well, proactive care, reactive care and care transitions. Participants spoke about improved social engagement, medication management and holistic care outcomes despite the inevitable functional decline. Supervision and peer support for dementia support workers, along with joint work with practice teams, were key to delivering this care. Quantitative data showed either stable or declining trends except for carer perceptions of support, which improved over time. Realist-informed economic analysis identified 23 cases where dementia support workers likely prevented high-cost care escalation through early intervention, access to general practitioner records and ability to prompt general practitioners’ care. Resource use shifted towards increased primary/community care and reduced secondary care costs. At a caseload of 53 dyads at any one time, mean annual cost per dyad was estimated at £1222.48. Limitations Low data completion rates, individual variability and the non-randomised design significantly limited utility of quantitative findings. Conclusions This work demonstrated how gaps in post-diagnostic support for people with dementia and carers can be addressed through tailored, proactive support and dementia support workers being fully embedded in primary care. A comprehensive training and ongoing support package is essential for enabling dementia support workers to carry out their role. Future work Further implementation research is needed to test delivery in changing National Health Service contexts, including whether different roles can deliver personalised dementia support. Study registration This study is registered as ISRCTN90828574. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research Programme (NIHR award ref: RP-PG-0217-20004) and is published in full in Programme Grants for Applied Research ; Vol. 14, No. 17. See the NIHR Funding and Awards website for further award information.

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