Dementia support workers will be embedded in GP practices to provide ongoing care for people with dementia and their families, rather than simply diagnosing and leaving them to cope alone. This matters because post-diagnosis care for dementia is currently fragmented and reactive, often leading to avoidable hospital admissions and poor quality of life. Despite the high societal costs of dementia, there has been little research into how to deliver effective, coordinated support after diagnosis. The project fills this gap by developing a practical, multidisciplinary intervention grounded in primary care. If successful, the approach could transform how the NHS supports the 586 people with moderate dementia and their carers who will take part in the trial. Instead of patients and families navigating services alone, a supervised dementia support worker would provide emotional and practical help, coordinate physical health care, and plan ahead to prevent crises. The trial will also assess cost-effectiveness, so the model could be rolled out across general practices if it saves money while improving wellbeing. The research includes a manual, training, and supervision framework to make the intervention reproducible.
View original technical description
Background: The burden of dementia for individuals with dementia (IwD) and their carers and family is substantial. The cost to society of care is great – but despite these costs post diagnostic care is recognised as inadequate with an imbalance between proactive care promoting quality of life and reactive care (including avoidable, iatrogenic and/or prolonged admissions). While some benefit has been derived from development of biomedical treatments, relatively little research has examined how best to provide post diagnostic support. Aim: To develop and evaluate a theoretically sound and practically feasible multidisciplinary complex intervention based in primary care for improving wellbeing and health-related quality of life for people with dementia and their carers/families. Overall design: Four linked work packages (WPs) to develop a theoretically sound and practically deliverable intervention (WP1), to develop the methodology for a definitive cluster randomised controlled trial (cRCT) (WP2), and to assess the effectiveness and cost-effectiveness of the intervention (WP3). PPI work carried out through a peer research group and an implementation work package (WP4) will be integrated throughout the five years. Public and patient involvement: A peer researcher group will be developed and supported. It will particularly contribute to WP1 and 2, and to dissemination. Intervention concept: Supervised dementia support workers (DSWs) will be located within general practices and integrated within the primary care team to support people with dementia and their carers with critical aspects of care: emotional and practical support; relationships and activities; physical health promotion and care; anticipatory care to prevent and reduce length of time away from the home. An intervention delivery platform will include a manual, training and supervision. Intervention development (WP1): Theory development using a critical realist framework incorporating 10-14 international expert interviews, interviews with individuals with lived experience, focused literature assessment (WP1a). Iterative testing and refining of intervention in practice though a feasibility study with embedded formative process evaluation, using clinical records, observation, 36 interviews and 20 recordings of interactions (WP1b). Development of trial procedures (WP2): Selection of outcomes: selection of outcome domains through iterative mapping against need and capacity of intervention to have impact; selection of measures based on review of psychometrics and stakeholder involvement (WP2a). Development of recruitment strategy through iterative testing in four practices aiming for 30% of eligible patients; decisions about inclusion criteria (e.g. severity, presence of carer/family, whether living in care home) (WP2b). Piloting trial procedures within the feasibility study, including recruitment of six practices, cluster randomisation, recruitment of 40 patients, outcome measure collection, follow up data collection (WP2c). Cluster randomised controlled trial (WP3): Final procedures and parameters will be based on WPs 1 and 2. Current proposal: Supervised DSWs based in general practice as developed in WP1 36 practices recruited from two areas and cluster randomised after baseline measures collected 586 IwD, with moderate cognitive or functional problems Sample size based on Bristol Activities of Daily Living Scale (BADLS) Flexible procedures used to approach, take consent and collect baseline measures from IwD (based on WP2b) Outcome measures to include functioning, quality of life, mental wellbeing, carer wellbeing as agreed in WP2a Follow up 10-12 months after baseline Parallel process evaluation (WP3b) Embedded cost effectiveness study (WP3c) Implementation (WP4): Consideration of implementation of the intervention during and after trial will be integrated into WPs 1 and 3. In years 3-5, in parallel
Plain English summaries and category classifications on this site are generated by AI and may not perfectly reflect the original research.
Is something wrong? Let us know