The Angela Project

Here you will find a collection of young onset dementia research studies related to The Angela Project.  The Angela Project was a three-year long research study; the largest study of young onset dementia carried out in the UK.  The key findings and recommendations can be found in this publication, Good practice in young onset dementia – improving diagnosis and support for younger people with dementia.

Some of the links we provide are to the abstract only.  For a full paper it may be necessary to subscribe to the site or to pay a fee.

You may also find it useful to visit the Support after diagnosis research web page. It contains a collection of completed research studies relating to post-diagnostic support.

Title – Establishing and sustaining high-quality services for people with young onset dementia: the perspective of senior service providers and commissioners
Summary  2023 study aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset and their families/supporters.  Click here

Title – Good practice in needs-based post-diagnostic support for people with young onset dementia: findings from the Angela Project
Summary – 2022 Evidence on post-diagnostic support for people with young onset dementia is scarce. This study aimed to provide insight into ‘what works’ from the perspectives of people with young onset dementia and their supporters. Click here

Title – Helpful post‐diagnostic services for young onset dementia: Findings and recommendations from The Angela Project
Summary – 2021 first large scale UK study to report on specific features of helpful services from the perspective of people with young onset dementia and their families. The results of this led to a three-tiered set of recommendations for good practice. Clickhere

Title – Living with young onset dementia and actively shaping dementia research – The Angela Project 
Summary – 2020 article, Keith Oliver shares his experience of receiving a diagnosis of dementia and how he has since been involved in research projects, highlighting the benefits of Patient and Public Involvement for both the person living with dementia, as well as for the research group. Keith concludes by encouraging better Patient and Public Involvement practice in all projects, emphasising the benefits to all those involved in research. Clickhere

Title – The nature of positive post-diagnostic support as experienced by people with young onset dementia 
Summary – 2020 study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers. The findings suggest that positive services may collectively create an enabling-protective circle that supports young people with dementia to re-establish and maintain a positive identity in the face of young onset dementia. Clickhere 

Title – Receiving a diagnosis of young onset dementia: evidence-based statements to inform best practice
Summary – 2020 study was designed to improve the understanding of personal experience of younger people undergoing investigation for dementia. In this study, young people with dementia and their supporters have highlighted key components of the referral, assessment, and diagnosis that they deem to be absolutely essential or very important for informing best practice based on their own personal experience. Clickhere

Title – International consensus on quality indicators for comprehensive assessment of dementia in young adults using a modified eDelphi approach
Summary – 2020 paper reports the findings from an international Delphi study with secondary care clinical experts, that identified key elements that support clinical decision-making. Consensus was reached on 48 essential components of a high-quality diagnostic workup for young onset dementia as determined by clinical experts. The results are consistent with previous literature reviews which identified the need for a systematic approach to clinical history taking, examination and investigation in young onset dementia. Clickhere

Title – Services for people with young onset dementia: The Angela Project national UK survey of service use and satisfaction
Summary – 2020 paper reports the findings from a large-scale, UK-wide survey of people living with young onset dementia and family carers. The aim was to gather baseline information on current young onset dementia service delivery and explore how patterns of care link to quality of care, user satisfaction and costs, in order to inform commissioning and service provision. The findings highlight the variation in routes to assessment and diagnosis and in ongoing care management arrangements.Clickhere 

Title – Young-onset dementia: scoping review of key pointers to diagnostic accuracy
Summary – 2019 review evaluates the current evidence about best practice in diagnosis to guide thorough assessment of the complex presentations of young onset dementia with a view to upskilling professionals in the field. The evidence presented supports the view that a multi-disciplinary/multi-specialist assessment within a specialist service or centre is necessary for establishing a young onset diagnosis. Integration between specialists and partnership with a broad range of services (including third sector) is vital to help connect patients and their families with support at home and in their community. Clickhere

Title – Receiving a diagnosis of young onset dementia: a scoping review of lived experiences 
Summary – 2019 review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults. Clickhere

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