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Good practice in young onset dementia
What was The Angela Project?
The Angela Project was a three-year research study carried out in 2016-late 2019 by the universities of Bradford, Northampton, Surrey and UCL, funded by the Alzheimer’s Society, and in partnership with Dementia UK and YoungDementia UK.
It was the largest study of young onset dementia ever carried out in the UK and was designed to look at how post-diagnostic support for people living with young onset dementia and the accuracy of diagnosis can be improved.
The study was dedicated to Angela who was diagnosed with dementia at 51 years of age. She had symptoms for three years before getting a confirmed diagnosis. Many other people experience diagnostic delays like Angela.
Largest research study ever into young onset dementia services
During the study, views were gathered from professionals and over 230 people living with, or caring for, someone with young onset dementia making it the largest study of its kind. 500 sets of case notes were audited and the team talked to commissioners and service providers to understand more about what helped and hindered them in providing young onset dementia services.
The survey also looked at good practice and the key needs of people living with young onset and their family members and whether services met these needs; as well as the barriers and facilitators to good practice in post-diagnostic support for younger people.
Whilst the research is now complete, the team is continuing to look for ways that their findings can be put into everyday practice by creating accessible resources for different audiences and uses.
The Angela Project research papers
Helpful post‐diagnostic services for young onset dementia: Findings and recommendations from The Angela Project (May 2021) – click here
Living with Young Onset Dementia and actively shaping dementia research through PPI – The Angela Project (2020) – click here
Young-onset dementia: scoping review of key pointers to diagnostic accuracy (2019) – click here
Receiving a diagnosis of young onset dementia: a scoping review of lived experiences (2019) – click here
The nature of positive post-diagnostic support as experienced by people with young onset dementia (2020) – click here
Receiving a diagnosis of young onset dementia: evidence-based statements to inform best practice (2020) – click here
International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified e‐Delphi approach (June 2020) – click here
Services for people with young onset dementia: The ‘Angela’ project national UK survey of service use and satisfaction (2020) – click here
Key needs videos
As part of The Angela Project, the team analysed what needs helpful services met which led to a set of eight needs that seem to be central to helpful support. We have created three short films to highlight these key areas