PriDem: Primary care led support in dementia: Developing best practice
Research type
Research Study
Full title
Primary care led post diagnostic dementia care: developing evidence-based, person-centred sustainable models for future care (PriDem)
IRAS ID
238921
Contact name
Lyndsey Dixon
Contact email
Sponsor organisation
Northumberland, Tyne & Wear NHS Foundation Trust
Clinicaltrials.gov Identifier
To be registered with NTW,
Duration of Study in the UK
1 years, 8 months, 30 days
Research summary
Research Summary
In England, post diagnostic dementia care is poorly coordinated with marked geographical differences. A recent Alzheimer’s Society report (‘Dementia 2015: aiming higher to transform lives’) found that 49% people with dementia received insufficient support after diagnosis. We will use the World Alzheimer Report (WAR, 2016) holistic definition of post diagnostic care, beginning from diagnosis and continuing throughout the illness.\n\nSince people with dementia and their families receive most of their care, most of the time from their GP, it has been recommended that future post diagnostic dementia care should be led by primary care (WAR, 2016). This should allow more appropriate use of expert resource and maintain better quality of care, whilst meeting the needs of a rapidly ageing population. \n\nWe will develop and test core and desirable components of primary care led, post diagnostic dementia care that will be cost effective, person-centered and sustainable. This will be achieved through a series of workstreams (WS):\n\nWS1: Understanding current practice \nWS2: Stakeholder views \nWS3: Developing and refining evidence based components of post diagnostic care\nWS4: Feasibility and implementation phase\nWS5: Cost impact \nWS6: Pathways to impact \n\nThis application concerns WS2 and 3 only; a brief overview of these workstreams is provided below.\n\nWS2 will explore the views and experiences of service providers and commissioners, frontline staff, people with dementia and their families, on current post diagnostic dementia care and future models of good practice (NICE 2018).\n\nWS3 will draw on the findings of WS1 and 2 to identify core and desirable components of primary care led, post diagnostic care. We will use a co-design approach and follow Medical Research Council (MRC) guidance on complex intervention development.
Summary of Results
The 2016 World Alzheimer Report recommended the urgent need for research into efficient, integrated and person-centred models of dementia care and support. It concluded that the current specialist-led model of dementia care could not meet demand and urged a task-shifted, task-shared approach, with greater involvement of primary care. Directly addressing this, in England we developed the Primary care-based post diagnostic Dementia Care (PriDem) programme (https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbb1JNOfLSjgycIwlAh-2BnAVt93PNu-2BM6EuE7matG1kuWX8m73_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJ6GbcRd-2FZ77GaK-2Be3bdZhuAiCXVTK0sZC638GfmisNNm-2FCYv4HmwPv9M1FdaG0DVqWORqUbkRqCY4ztcEVRz4VapM-2BHM6eoR00RugfsPGdAlMwpw0WrTcwoALj1ejKo4eWW80Gcxzn7wQGq0Y8KWNymwLHEqhu-2F-2BOzhwAb0i4pzA-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7Cb6ccb061c4cc48d5cc1908daa602e5ca%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638004828617312153%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=zBI%2Fm%2F5VkVa%2FsSyDnlM2ZTOm2k1QDf6d1pQvVXjMjok%3D&reserved=0 The aim of PriDem was to develop, set up and assess person-centred and sustainable models of post diagnostic dementia care and support in primary care. Our research would be unique in that it would be co-created with a patient, public and professional stakeholder group, the Dementia Care Community (DCC) bringing together people living with dementia, their families and health and social care professionals [1].
Phase 1: learning lessons from existing international research We began by pulling together findings from previous research via a systematic review of research trials of post-diagnostic dementia care interventions where primary care was substantially involved. We included 23 papers (10 trials of 9 interventions delivered in 4 countries) [2]. A Primary care case management model, usually specialist nurse led, showed the most promise in terms of patient/carer outcomes and health care costs [2].
Next we sought to find key factors which encouraged successful set up of such primary care approaches. Our mixed methods review included 49 evaluations of a wide range of primary care models [3]. Key enabling factors included: having clinical dementia expertise within or easily accessible to primary care, primary care leadership, key stakeholder engagement and commitment and sufficient funding [3]. Finally we questioned whether lessons could be learnt from the primary care management of other long term, complex conditions, such as Parkinson’s disease, via a review of reviews [4]. Having formal collaboration and service integration between services, for example a shared care pathway, was one of the important factors [4].
Phase 2: learning from national examples of ‘good practice’
A decade after England’s national dementia strategy was introduce, we mapped post diagnostic dementia care and support provision in England via an e-survey of dementia commissioners [5]. Findings from 82 service commissioners with representation from each region in England revealed: i) considerable geographical inequalities in services, with most focusing on information provision and support within the first two years after diagnosis and ii) fragile services due to short term funding. Despite an increasingly diverse population, few areas reported services for minority groups [5]. A follow up interview study one year into the Covid pandemic revealed potential worsening of these inequalities [6].
Building on our survey, we interviewed key professionals in England and Wales to get more in depth answers [7, 8]. We talked to: 61 commissioners and service managers; 68 health, social care and voluntary sector frontline staff and 48 service users (17 people living with dementia and 31 carers). Participants had varied views as to whether a primary care approach was appropriate, achievable and/or desirable. Potential benefits of a task-shifted approach were continuity and familiarity for both patients and staff and a more holistic approach to dementia care; challenges included the capacity, ability and inclination of primary care to deliver such services. Conceptual challenges including uncertainties around the nature and length of post diagnostic support and identification of which tasks could be shifted to primary care [7]. Barriers to implementation comprised an unsupportive, rigid care infrastructure and limited capacity and capability in primary care [8].
Notwithstanding, we identified many examples of post diagnostic dementia care and support, either led by primary care or where primary care was integrated into a secondary care led model. With the aim of identifying what comprised a model of good practice, six sites were selected for a case study evaluation. The service models included: a specialist dementia (Admiral) nurse based in primary care; dementia specialist GPs and secondary care led memory clinics with formal, integrated shared care support with primary care. There was no one perfect model but all sites delivered good quality care in certain areas. Analysis revealed 20 distinct core components of post-diagnostic support, from diagnosis to end of life, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support; the first and last were cross-cutting themes [9].
Phase 3: co-development of the PriDem intervention: a task shared model of post diagnostic dementia care Drawing on the key findings from Phases 1 and 2, we used the Theory of Change approach to co-develop our PriDem intervention [10] via workshops, meetings and task groups with the research team, people living with dementia and their families and professionals (n=124) [1]. The approach is very like the shared care model adopted in England for other long term illness care (e.g. diabetes and cancer). The model places clinical expertise in primary care via a dementia specialist nurse [4-6]. His/her role is three fold: tailored care and support for complex cases; building primary care knowledge and confidence, and developing formal shared care systems [12] to ensure integrated, sustainable services targeted at providing the PriDem core components of care [11]. We are now in testing the new model in primary care and assessing whether it is acceptable and works in practice and feasibility alongside an economic evaluation.References
1. Brunskill G, Wheatley A, Bamford C, Booi L, Costello J, Herbert J, et al. How do we meaningfully engage stakeholders in developing a best practice approach to post-diagnostic dementia support? . Journal of Dementia Care. 2022;30(2):24-7.
2. Frost R, Walters K, Aw S, Brunskill G, Wilcock J, Robinson L, et al. Effectiveness of different post-diagnostic dementia care models delivered by primary care: a systematic review. British Journal of General Practice. 2020;70(695):e434. 10.3399/bjgp20X710165
3. Frost R, Rait G, Aw S, Brunskill G, Wilcock J, Robinson L, et al. Implementing post diagnostic dementia care in primary care: a mixed-methods systematic review. Aging & Mental Health. 2020:1-14. 10.1080/13607863.2020.1818182
4. Frost R, Rait G, Wheatley A, Wilcock J, Robinson L, Harrison-Dening K, et al. What works in managing complex conditions in older people in primary and community care? A state-of-the-art review. Health and Social Care in the Community. 2020;28:1915-27. 10.1111/hsc.13085
5. Frost R, Walters K, Robinson L, Harrison-Dening K, Knapp M, Allan L, et al. Mapping post diagnostic dementia care in England: an e-survey. Journal of Integrated Care. 2020. 10/1108/JICA-02-2020-0005
6. Wheatley A, Poole M, Robinson L. Changes to postdiagnostic dementia support in England and Wales during the COVID-19 pandemic: a qualitative study. BMJ Open. 2022;12(2):e059437. 10.1136/bmjopen-2021-059437
7. Wheatley A, Bamford C, Brunskill G, Harrison-Dening K, Allan L, Rait G, et al. Task-shifted approaches to post diagnostic dementia support: a qualitative study exploring professional views and experiences. BMJ Open. 2020;10:e3040348. 10.1136.bmjopen-2020-040348
8. Wheatley A, Bamford C, Brunskill G, Booi L, Dening KH, Robinson L, et al. Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice. Age and Ageing. 2021. 10.1093/ageing/afab114
9. Bamford C, Wheatley A, Brunskill G, Booi L, Allan L, Banerjee S, et al. Key components of post-diagnostic support for people with dementia and their carers: A qualitative study. PLOS One. 2021;16(12):e0260506. https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbbXX7Bv9IXL-2FE-2BBhtv7RcXIBFVYu6lxqD0pxg-2Bp5ypW6xGWL5ewrlQfAdiuBaGUJvA-3D-3DbwEP_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YJ6GbcRd-2FZ77GaK-2Be3bdZhuQkqDxNH3avQ5A2SyrLcdPThWc39QMDAAu3e-2FkSiYwBxZ-2BjpV2bNsvlMSbfi5vwvj0GVRg-2F7xfBtnMDxicx8C1r4ZMNCx1WhEfcnvAnZ5ekxYWwqxsCcV8mStUwuAN39adz-2BOUskRv623-2Fle-2BNzItvg-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7Cb6ccb061c4cc48d5cc1908daa602e5ca%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638004828617312153%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=GV8yUeAz89wKAEcoqJohyKZrfv6Xuu17fTuifbUfxwE%3D&reserved=0
10. Bamford C, Wilcock J, Brunskill G, Wheatley A, Dening KH, Manthorpe J, et al. Improving primary care based post-diagnostic support for people living with dementia and carers: developing a complex intervention using the theory of change. PloS One. submitted.REC name
Wales REC 3
REC reference
18/WA/0349
Date of REC Opinion
7 Nov 2018
REC opinion
Further Information Favourable Opinion