The Angela Project

In the summer of 2016, a UK based research team from University College London (PI), University of Northampton (Lead for Workstream 1), University of Bradford (Lead for Workstream 2), and the University of Surrey successfully acquired Alzheimer’s Society project grant funding to design, develop, and conduct research into improving diagnosis and post-diagnostic support for younger people living with dementia and their caregivers. Known to the team, the case of Angela, had inspired the initial idea from the University of Northampton for the project proposal. Like many younger people (under the age of 65), Angela had experienced her symptoms for over three years, prior to having her diagnosis of dementia confirmed at the age of 51. In addition, the results of an earlier national survey conducted by the team had highlighted that there are relatively few age appropriate activities, or short and long-term care, available for people of working age following a dementia diagnosis (Carter & Rodda, 2015). Finally, several of the project team are also members of the Young Dementia Network (YDN), which was also launched in 2016. The YDN is a community of people, including those with dementia, carers, researchers, service providers, and clinicians, who have witnessed first-hand the impact of dementia on younger people and their families. The ANGELA Project has two specific aims: to improve the accuracy of clinical diagnosis and post-diagnostic support for younger people with dementia (YPD). To achieve these aims, the team in Workstream 1 (UCL and Northampton) have reviewed the existing scientific evidence and gathered the opinions of a panel of leading experts in the field, including the views of people with dementia and carers, via a Delphi approach to develop a `gold standard’ for diagnosis. In addition, the team plan to audit a sample of clinical case notes to ascertain how they compare to the gold standard that has been developed. Ultimately, the intention is to produce clinical guidelines, which will assist practitioners through the correct steps in making a formal diagnosis. In Workstream 2 (Bradford and Surrey), the team are collecting examples of good practice of care and support following a diagnosis from young people with dementia and their families. This is via an online survey, focus groups, and individual interviews. They are also interviewing commissioners of YPD services across the UK, to ascertain what the barriers are to delivering good YPD specific services, and what would help them provide improved services for this patient group.