Psychosocial support for people affected by Rare Dementias: Developing digital provision and understanding the role of existing TALKing therapy services.
For this research study, we are focusing on five 'rarer'/under-researched types of dementia that are either genetic (inherited from a parent) or non-memory led (initial difficulties with language, vision or personality changes, rather than memory). Compared to typical dementias (e.g., typical Alzheimer's disease), rarer dementias pose additional challenges, including:
Unusual/unexpected symptoms that are harder for patients and carers to understand and manage;
Mostly affecting people of working-age (often with significant financial and family-care commitments);
In genetic dementias, the impact of caring for a relative with dementia while also being at risk of developing the condition and passing it on to children.
Rarer dementias create additional distress for the person and their carers. However, dementia services are not
designed for them and don’t meet their needs. NHS plans, clinicians and patient groups say this needs to change.
Rarer dementias directly affect around 115,000 people in the UK (including 59,000 people with dementia, 45,000 carers and 11,000 at genetic risk of rare dementias). They are spread around the country. So, to improve service access, the government recommends digitally-provided support (e.g., online talking-groups, interactive websites). However, we don’t yet know if this works in rarer dementias.
This research study aims to:
Evaluate how useful existing talking-therapy services are in rarer dementia prevention and care.
Assess people affected by rarer dementia's level of access to digital programmes and create resources to make access easier.
Adapt a digital programme used in typical dementias to improve thinking and learning and see whether it works in people with rarer dementias.
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.
Test whether our digital programmes are cost-effective.
This 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.
Patient and Public Involvement (PPI)
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).
This study is funded by the National Institute for Health & Care Research (Grant reference NIHR203680).