posted on 2024-06-18, 15:15authored byCarol Rogan, Bernadette Rock, Emer Begley, Barry Boland, Kevin Brazil, Unai Diaz-Orueta, Sarah Donnelly, Michael Foley, Tony Foley, Caoimhe Hannigan, Louise Hopper, Fiona Keogh, Brian Lawlor, Iracema Leroi, Cora O'Neill, Laura O’Philbin, Maria PertlMaria Pertl, Dominic Trépel, Seán Kennelly
Background: Dementia research prioritisation allows for the systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack of information available in Ireland regarding priority areas for dementia research. To address this gap, a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers.
Methods: (1) An anonymous online survey of professionals, based on an existing WHO global survey: the global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under five criteria; (2) A mixed-methods exercise for people living with dementia and family carers: this involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.
Results: Eight of the top ten research priorities in the survey of professionals ( n=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops ( n=13) ranked 'better drugs and treatment for people with dementia', 'dementia prevention/ risk reduction' and 'care for people with dementia and carers' as their top priority areas.
Conclusions: Findings from this prioritisation exercise will inform and motivate policymakers, funders and researchers to support and conduct dementia-focused research and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.
Funding
Dementia Research Network Ireland is funded by the Health Research Board Ireland [DRNI-2021-1]
History
Data Availability Statement
Underlying data
Trinty’s Access to Research Archive: DRNI Survey Data.xlsx, https://doi.org/10.25546/101186 (Rogan et al., 2022).
Data is held under a Creative Commons Attribution-Share Alike license (CC-BY-SA).
The workshop data is under license by a third party and can not be shared openly. To request access to data from the facilitated workshops (involving people living with dementia and family carers), contact DRNI: info@dementianetwork.ie or The Alzheimer Society of Ireland: research@alzheimer.ie.
Comments
The original article and an updated version may be available on https://hrbopenresearch.org/
Published Citation
Rogan C et al. Dementia research in Ireland: what should we prioritise? [version 2; peer review: 2 approved]. HRB Open Res. 2023;6:12