This CLAHRC project was a major piece of work to inform the national/international dementia research agenda and was done as part of a collaboration with the Dementia Priority Setting Partnership.
- Download the CLAHRC bite of this piece of work.
- Kelly S et al. Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda. Age and Ageing. 2015: 44: 985–993
doi: 10.1093/ageing/afv143 download a pdf
The Dementia Priority Setting Partnership is a collaboration with the Alzheimer’s Society and other dementia stakeholders representing patients, carers, clinicians, health and social care professionals. The process was independently facilitated and chaired by the James Lind Alliance. The James Lind Alliance is a not-for-profit organisation and is now part of the National Institute for Health Research (NIHR) Evaluation, Trials and Studies Coordinating Centre (NETSCC). This work has involved substantial successful collaboration with external organisations with interest in dementia and with research funders. The project has had a direct impact on a number of major funding calls relating to dementia and a number of projects directly relating to the questions identified have been funded.
The work involved people with dementia, their carers’, clinicians and other health and social care professionals by identifying, prioritising and disseminating unanswered research questions relating to dementia. Unanswered questions relating to dementia prevention, treatment, diagnosis and care were collected from all stakeholders. After formatting the extensive amount of data into research questions and checking against published evidence, 146 unanswered questions were identified. After an interim prioritisation stage involving voting by stakeholder representatives and a final face to face prioritisation workshop, a top 10 priorities for dementia research were identified.
Nine of the top ten priorities related to care of people with dementia and this information has been used to inform the wider research agenda that until more effective treatments are found for dementia, care of people with dementia and their carers is also an important area for research.
The top 10 priorities and the longer list of 146 unanswered questions have been widely disseminated through conference presentations, technical and lay summary reports through the Alzheimer’s Society, steering group and partner organisations. Full details of the questions and process were supplied to NIHR for consideration in their funding streams and made publicly available on the NICE UK Database of Uncertainties about the Effects of Treatments (UK DUETS).The impact of this work has led to the following:
- Ireland HSC Public Health Agency 2013 (2 rounds, £2 million and £1 million in second round) – relating to staff training, quality of care, coordination of care, information and communication and management of behaviours in people with dementia. The call involves detailed reference to the Dementia PSP project. A number of projects have now been funded.
- NIHR Health Services and Delivery Research theme 2014 – relating to organisation and delivery of dementia care: specifically, memory clinics and allied services; integrated community and intermediate care; care homes – understanding differences in care home settings and impact on costs, quality and outcomes for people with dementia; hospitals – which models of acute care and staffing lead to better quality care and shorter length of stay for people with dementia. The call involves detailed reference to the dementia PSP project.
- The priorities have also influenced other NIHR calls including the 2015 calls relating to multimorbidities in older people (across all NIHR themes 2015) and improving sleep for people with dementia living in the community (NIHR HTA 2014) covering behavioural and pharmaceutical approaches.
- Alzheimer’s Society funded projects (April 2015):
- Junior fellowship (up to £225k) – Being obliged, willing and prepared to care: A study on how to support current and prospective carers.
- Clinical Research Training Fellowships (up to £225k) – Adapting cognitive behavioural therapy for people with dementia; Understanding the experience of eating and drinking difficulties from the perspective of people living with dementia in residential care homes.
- Projects (up to £400k) – Dissemination and implementation in dementia care: a systematic review.
- Edwina systematic review (Lee Hooper et al UEA) Effectiveness of interventions to improve, maintain or facilitate oral food and/or drink intake in people with dementia: a systematic review.
- The WHO is currently conducting its own research prioritisation process in dementia. The Dementia PSP priorities were submitted to that process and some have been included in the top 50 priorities recently circulated for voting.
Extensive collaboration with the Alzheimer’s Society and a wide range of stakeholders in dementia and positive impact of patient and public involvement.
The NIHR CLAHRC contribution partially funded a researcher who conducted the analysis and development of research questions, liaised with relevant stakeholders, disseminated the questions including presentations, writing technical and lay summary reports, and dissemination to NIHR and UK DUETS