The Angela Project legacy:
five years on

By Jan Oyebode
Professor of Dementia Care, University of Bradford

What was The Angela Project?

‘The Angela Project: improving diagnosis and post-diagnostic support for younger people living with dementia and their caregivers’ was a major research project on care for young onset dementia. Funded by Alzheimer’s Society, it ran from 2016-19. In this blog Jan outlines the history of the project with a focus on its outcomes, how they are being used and what we need to do next..

The Angela Project grew directly from the Young Dementia Network. The three clinical-academics who proposed the project, secured the funding and ran the studies are all founder members of the Young Dementia Network; our discussions within Young Dementia Network led to our collaboration.

Dr Janet Carter is an old age psychiatrist who led the overall project, Professor Jackie Parkes is a mental health nurse, and I am a clinical psychologist, so between us we were quite a multi-disciplinary team. We were joined by Heather Gage, a health economist, three excellent researchers (Jenny La Fontaine, Vasileios Stamou and Mary O’Malley) and some brilliant experts-by-experience including Keith Oliver and Jane Twigg.

The Angela Project had several parts which are summarised in the doughnut below. The lefthand side shows the workstream on diagnosis and the righthand side shows the workstream on post-diagnostic support.

What came out of The Angela Project?

The project led to a number of outcomes:

• It set standards for good practice in assessment and diagnosis
• Over 400 case notes were audited against the standards that had been set. This found that evidence of good practice in assessment and diagnosis was lacking
• Developed a picture of the services used by people with young onset dementia, the costs of care and people’s satisfaction with their services
• Identification of the types of services people with young onset dementia find helpful and why
• Identification of the factors that lead to specialist young onset services being set up and sustained

The headline findings were incorporated into a booklet of key findings and recommendations which is published on the Young Dementia Network website.

10 papers have been published in academic journals.

In addition, we produced eight short videos of people living with young onset dementia or supporting someone with young onset dementia talking about each of the key needs that positive services met.

Five years on, what still stands?

Some aspects of the information we produced may now be out of date, practice may have changed and the services people receive may have changed. To know this, we would have to repeat the case note audit and re-run the survey of people living with young onset dementia and their supporters which we used to find out about service use, cost and satisfaction.

Other aspects remain as relevant now as they were five years ago. These include the standards for assessment and diagnosis, the attributes of positive services and the steps to establishing and sustaining services. Within the past year, we have been invited to speak about the project and its finding to audiences in Wales, Scotland and different parts of England from the North West to the South East. We have heard that NHS Trusts are using our findings to inform them as they seek to improve their young onset dementia services.

One ‘child’ of the project has been an edited book, ‘Young onset dementia reconsidered: a solution-focused approach‘. This was jointly edited by myself and George Rook who lives with young onset dementia. The members of The Angela Project research team wrote chapters, alongside a range of other people with specialist knowledge and expertise.

We organised the whole book around the three key areas that came out from The Angela Project as very important to people with young onset dementia:

• to maintain or regain autonomy or control over life (as much as is possible)
• to have opportunities to express individual identity
• to have meaningful connections with family, friends and wider society

The Angela Project has had a lasting legacy that is informing improvement to services that support people living with young onset dementia.

We hope this short account may inspire others to collaborate to put in those big bids that can lead to evidence that can be used towards further improvement.

• Professor Jan Oyebode is Professor of Dementia Care at the Centre for Applied Dementia Studies, University of Bradford, having spent her earlier career as a clinical psychologist in the NHS. Her current research interests focus on relationships, coping with life with dementia, and family caring, including how culture, younger age and type of dementia impact on these. Jan is a member of the Young Dementia Network Steering Group and leads the Research and Evidence workstream.

June 2025