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.