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 – Helpful post‐diagnostic services for young onset dementia: Findings and recommendations from The Angela Project (May 2021)
Summary – The 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 (2020)
Summary – In this article, Keith 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 – Young-onset dementia: scoping review of key pointers to diagnostic accuracy (2019)
Summary – This 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 (2019)
Summary –This 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
Title – The nature of positive post-diagnostic support as experienced by people with young onset dementia (2020)
Summary – This 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 (2020)
Summary – The 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 e‐Delphi approach (June 2020)
Summary –This 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 (2020)
Summary –This 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
Share young onset dementia research
Do you know of a young onset dementia research study for inclusion in this collection?