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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.
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.
Aim 2
Assess people affected by rarer dementia's level of access to digital programmes and create resources to make access easier.
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.
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.
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).