PriDem: best practice in primary care led dementia support
Research type
Research Study
Full title
Primary care led post-diagnostic dementia care: Feasibility and implementation study of evidence-based, person-centred sustainable models for future care
IRAS ID
294881
Contact name
Greta Rait
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2021/05/07, Data Protection
Duration of Study in the UK
1 years, 4 months, 17 days
Research summary
Research Summary
Research continues to highlight the urgent need for good quality, accessible and equitable post diagnostic dementia care and support in England which has been further exacerbated by the coronavirus pandemic. Updated national guidance summarises evidence-based practice for post diagnostic dementia support but lacks practical advice on implementation. The Alzheimer’s Society funded PriDem programme (2018-2022) aims to develop and deliver accessible, feasible, sustainable primary care-based, post diagnostic dementia care and support to people with dementia and their families with the ultimate aim of reducing geographical inequalities. To date, PriDem has reviewed previous research and explored national practice through a survey, interviews and in-depth case studies. Following Medical Research Council recommendations, we used our key findings to co-design and develop the PriDem intervention.
The PriDem intervention will be situated within primary care networks, and include a Clinical Dementia Expert who will collaborate to improve local services. The Clinical Dementia Expert will work to build capacity by supporting non-specialists to deliver dementia care and support, improve systems for delivery of evidence based, post diagnostic support and provide personalised care and support plans to meet the complex needs of with people living with dementia and their informal carers.
The feasibility and implementation of the PriDem intervention, which will run for 12 months, will be trialled in four differing sites (Primary Care Networks) in England. In addition to working with practice staff, and the Clinical Dementia Expert, we will be recruiting patients living with dementia and their carers at the practices to provide feedback on the intervention and various quality of life measures.Summary of Results
Background: Over 900,000 people in the UK have dementia, but many do not receive the care they need after diagnosis. To address this, the PriDem intervention, a primary care led approach to post-diagnostic dementia care, was developed by researchers, NHS professionals, people with dementia and carers. The intervention involves a Clinical Dementia Lead (or CDL) with expertise in dementia care working with GP practice teams to deliver three key strands:
● Developing and strengthening care systems.
● Delivering care and support that is tailored to the needs and priorities of individuals.
● Building staff knowledge and confidence through training.
The evaluation study
Over 900,000 people in the UK have dementia, but many do not receive the care they need after diagnosis. To address this, the PriDem intervention, a primary care led approach to post-diagnostic dementia care, was developed by researchers, NHS professionals, people with dementia and carers. The intervention involves a Clinical Dementia Lead (or CDL) with expertise in dementia care working with GP practice teams to deliver three key intervention strands:
Evidence based PriDem adaptable templates support activities such as dementia reviews and care planning.
● Developing and strengthening care systems. ● ● Delivering care and support that is tailored to the needs and priorities of individuals. ● ● Building staff knowledge and confidence through training.The evaluation study:
To test the PriDem approach, two CDLs worked with 7 GP practices in the Southeast and Northeast of England for 12 months. We looked at whether the approach could improve access to personalised care planning, whether the intervention was feasible and acceptable and what the implementation challenges might be. To do this we:
● Carried out a case notes audit of the presence/absence of a personalised care plan for people on the dementia registers of the 7 practices, comparing pre-Covid 2018-19 (pre-intervention) to 2022-23 (postintervention).
● Completed health related quality of life questionnaires with people with dementia and carers registered with the 7 practices. ● Collected qualitative data, exploring how people with dementia, carers and professionals experienced the intervention.
Findings
Practice teams innovated in various ways, for instance adapting approaches to delivering annual dementia reviews and care planning. CDLs delivered formal and informal dementia training to a range of staff groups. The North East and South East CDL developed a comprehensive mapping document outlining local and national services and referral systems to support practice staff in making timely and tailored referrals.
After the intervention, the percentage of patients with personalised care plans increased from 37.4% to 64.7%. We observed changes in the areas of care and support covered, suggesting a move towards more holistic care planning.
Our qualitative findings showed how pressures experienced in primary can be a barrier to implementation, but that motivated staff champions can help drive change. Due to staffing challenges, in some practices the CDL was seen as more of an extra clinician, which did not help with sustainable change. Overall, those interviewed felt the intervention led to positive outcomes for patients, professionals and practices.
Highly engaged practices viewed change as meaningful and sustainable.
Conclusions
The PriDem approach is acceptable and can lead to meaningful and long-lasting improvements in dementia care and support. Future commissioning of such an approach should consider funding to support already stretched services. It should identify and support motivated and engaged staff who can champion the approach, use PriDem adaptable templates, and ensure staff understand the aims of this model. A larger scale implementation study would inform future NICE dementia guidelines, commissioning decisions and NHS England recommendations for personalised dementia care planning.REC name
Wales REC 4
REC reference
21/WA/0267
Date of REC Opinion
20 Sep 2021
REC opinion
Further Information Favourable Opinion