Living with young onset dementia and actively shaping dementia research – The Angela Project

Oliver, Keith, O'Malley, Mary, Parkes, Jacqueline, Stamou, Vasileios, La Fontaine, Jenny, Oyebode, Jan and Carter, Janet (2019) Living with young onset dementia and actively shaping dementia research – The Angela Project. Dementia, 19 (1). pp. 41-48. ISSN 1471-3012

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Abstract

Younger people living with dementia have been actively engaged in challenging society’s attitude to dementia. Despite their increased visibility though, there are substantial obstacles for younger people living with dementia in receiving a timely and accurate diagnosis and gaining access to appropriate support. Keith Oliver has been an active member of the Patient and Public Involvement Forum for the Angela Project, an Alzheimer’s Society funded project aimed at improving accuracy of diagnosis and post-diagnostic support for younger people living with dementia. 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.