Close
It has been a busy year for the Angela Project! Firstly by finalising our research design and obtaining ethical approval, we have now set up all our NHS sites across the UK, and have started data collection for multiple aspects of the project.
Our Patient and Public Involvement (PPI) group of people living with young onset dementia (YOD) and supporters have played a pivotal role in informing the research design, and all aspects, of the project. The project team meet with the PPI members three times a year. Additionally, our Project Steering Committee of national and international experts in the area of YOD, have acted as a 'critical friend' to the project, providing us with supportive feedback at regular intervals during the project.
The Angela Project's PPI October 2017 Meeting held at Dementia UK Headquarters, London.
The research activities that are currently active are:
- The Improving Support and Service Use Survey which aims to improve the services and support for younger people with dementia and their family members/supporters after diagnosis (please visit https://bradford.onlinesurveys.ac.uk/the-improving-support-and-service-use-survey if you would like to take part).
- The focus groups with younger people with dementia to identify positive examples of services and support and the needs they meet have started in January 2018.
- The Delphi-PRO with international and national experts to develop quality indicators that will highlight all the important elements that clinicians should take into account when delivering diagnosis for young onset dementia.
- The Delphi-EXP with younger people with dementia and their supporters to determine the best way to carry out and deliver a diagnosis from the users' perspective, has recently started, and data collection will continue until June/July 2018.
Key study dates and events for the future:
- Follow-up interviews with younger people with dementia and their family members/supporters - Expected to begin in June 2018
- Case note audit - Expected to begin in June 2018
- Interviews with service providers and commissioners - Expected to begin in January 2019
- Development of best practice guidelines for young onset dementia diagnosis - Expected to begin in January 2019
- Development of best practice guidelines on post-diagnostic support for younger people with dementia and their families/supporters - Expected to begin in June 2019
- Dissemination of findings - Expected to begin in October 2019