Improving diagnosis and support for younger people with dementia
Research type
Research Study
Full title
The Angela Project: Improving diagnosis and post-diagnostic support for younger people living with dementia and their family members/supporters
IRAS ID
212815
Contact name
Janet Carter
Contact email
Sponsor organisation
University College London
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Dementia in younger people affects up to 42,000 people in the UK. The first signs of young onset dementia often differ from later onset. The average time to diagnosis is over 4 years, as clinicians often do not immediately recognise the symptoms. In addition, in some areas of the country specialist treatment, care and support is limited or not available.
This 3 year project aims to develop guidelines that will improve diagnose dementia in younger people and improve the experience of receiving a diagnosis. It will gather good examples of post-diagnostic age-appropriate and condition-appropriate support that will help spread good practice more evenly across the UK.
To develop the best practice guidelines, two panels will be asked for their opinions. One will be a panel of leading experts and the other will consist of younger people with dementia and their family members/supporters. Examples of clinical case notes of YPD diagnosed in the last year will be compared to a 'quality indicators' template. This will show where there are gaps in the way younger people with dementia are currently diagnosed.
Concerning post-diagnostic support, we will ask younger people with dementia and family members for their examples of good care and support following diagnosis and about the support they receive from health and social services, family and friends. We will interview some younger people with dementia and family members to understand more about these examples and how they meet their needs. Furthermore, we will interview those who provide and commission young onset dementia services across the UK. We will ask them about barriers to providing good services and what would help them provide better services.
Ultimately, we intend to produce guidance for improved diagnosis and post-diagnostic support that will help YPD get the right help and support much earlier.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
17/SC/0296
Date of REC Opinion
26 Jun 2017
REC opinion
Favourable Opinion