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.
If you are interested in talking to our researchers about the RD-TALK research activities, please let us know at contact@raredementiasupport.org
Rare Dementia (RD) – TALK is funded by the National Institute for Health & Care Research (Grant reference NIHR203680).
Get involved
BELIDE Better Living with Non-memory led dementias
This study is open to anyone caring for someone in the early to mid stages of frontotemporal dementia (FTD), posterior cortical atrophy (PCA), or primary progressive aphasia (PPA). The study is a randomised clinical trial investigating whether a new online education course called “Better Living with mon-memory led dementia” or BELIDE can help you take better care of yourself and the person you support while helping you learn more about dementia.
IWARF Improving Wellbeing Associated with Rare Familial dementias
This study, introduced in the video below, is open to anyone from a family affected by familial frontotemporal dementia (fFTD) and familial Alzheimer’s disease (fAD).With separate interventions for fAD and fFTD co-designed with people from the different families and with separate pathways within the programme depending on your genetic status, this research presents an opportunity for you as someone from a family affected by familial dementia to engage in research specifically designed with your support needs in mind.
Whether you are gene positive, gene negative, or don’t know your genetic status, if you are interested in finding out more please do get in touch via the contact@raredementiasupport.org email address and read the information sheet below.