Rare Dementia (RD) - TALK
This research programme will be the largest study of psychological wellbeing in people with rarer dementias and their carers, with ~10,300 participants contributing to at least one research activity.
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- Joshua Stott (Principal Investigator)
- Emilie Brotherhood (Co-Principal Investigator)
- Nick Fox (Co-Investigator)
- Jon Rohrer (Co-Investigator)
- Seb Crutch (Co-Investigator)
- Natalie Ryan (Collaborator)
- Aimee Spector (Co-Investigator)
- Aida Suarez Gonzalez (Carer Trial Lead)
- Emma Harding (At-genetic-risk Trial Lead)
- Amber John (MODIFY researcher)
- Céline El Baou (RD-TALK Research Assistant)
- Ollie Hayes (RD-TALK Research Assistant)
- Caroline Fearn (RD-TALK Research Assistant)
Two PPI-leads with personal experience of rarer dementias helped develop our proposal. They and all other patients/public involved will ensure relevance to people with rare dementias by shaping the project throughout (e.g., helping design digital programmes, develop surveys and share findings):
- Nikki Zimmermann (Co-Public & Patient Involvement Lead)
- Val Mansfield (Co-Public & Patient Involvement Lead)
The RD-TALK project is a collaboration between researchers based at UCL and UCLH and:
- Bangor University: Zoe Hoare, Andrew Brand, Steffan Hughes
- Swansea University: Deb Fitzsimmons, Andrea Tales, Katherine Cullen
- King’s College London: Monica Leverton
RD-TALK focuses on five types of dementia that are either genetic (inherited from a parent, such as familial Alzheimer’s disease or familial frontotemporal dementia) or non-memory led (initial difficulties with language (PPA), vision (PCA) or personality changes (bvFTD). Rarer dementias pose additional challenges compared to typical dementias (e.g., typical Alzheimer's disease). However, dementia services are not designed for them and don’t meet rare dementia needs. NHS plans, clinicians and patient groups say this needs to change.
The RD-TALK study has several aims to help change happen:
Aim 1
Evaluate how useful existing talking-therapy services are in rarer dementia prevention and care.
El Baou C, Saunders R, Buckman JEJ, et al. Effectiveness of psychological therapies for depression and anxiety in atypical dementia. Alzheimer's Dement. 2024; 20: 8844–8854. https://doi.org/10.1002/alz.14332.
Aim 2
Assess people affected by rarer dementia's level of access to digital programmes and create resources to make access easier.
Brotherhood, E. V., El Baou, C., Fearn, C., Hayes, O., Zimmermann, N., Tsipa, A., Crutch, S. J., Stott, J. Factors influencing the use of digital health and wellbeing resources in non-memory-led dementias: A quantitative survey study. JMIR Preprints. doi: 10.2196/preprints.85863
Aim 3
Adapt a digital programme used in typical dementias to improve thinking and learning and see whether it works in people with rarer dementias.
Lousley C, Stott J, Fearn C, et al. Cognitive stimulation in non-memory led dementias: A scoping review. Dementia. 2025;24(5):996-1019. doi:10.1177/14713012251342018.
Aim 4
Test whether digital programmes that we have developed can improve psychological wellbeing in:
- Carers of people with rarer dementias
- People at risk of genetic dementias.
Suarez-Gonzalez A, Brotherhood E, John A, et al. Better Living with Non-memory-led Dementia: study protocol for a randomised controlled trial of a web-based caregiver educational programme (BELIDE trial). BMJ Open 2025;15:e102518. doi: 10.1136/bmjopen-2025-102518.
Aim 5
Test whether our digital programmes are cost-effective.
Rare Dementia (RD) - TALK is funded by the National Institute for Health & Care Research (Grant reference NIHR203680).
Get involved
If you are interested in talking to our researchers about the RD-TALK research activities, please let us know here:
- Carer trial for PCA, PPA and bvFTD (rdc.betterlivingtrial@ucl.ac.uk)
- At-risk trial for fFTD and FAD (iwarf@ucl.ac.uk)