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.

Key findings and recommendations publication

The Angela Project team has collated some of their key findings and recommendations to create a publication, Good practice in young onset dementia – improving diagnosis and support for younger people with dementia.

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

Find out more

Download a copy

You can download a copy of Good practice in young onset dementia – improving diagnosis and support for younger people with dementia below

Download here

Request a copy

You can request a copy of Good practice in young onset dementia – improving diagnosis and support for younger people with dementia below

Request here