Young onset dementia: Public involvement in co-designing community-based support

Andrea M Mayrhofer (Lead Author), Elspeth Mathie (Lead Author), Jane McKeown, Claire Goodman, Lisa Irvine, Nathalie Hall, Michael Walker

Research output: Contribution to journalArticlepeer-review

17 Citations (Scopus)
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Whilst the support requirements of people diagnosed with young onset dementia are well-documented, less is known about what needs to be in place to provide age-appropriate care. To understand priorities for service planning and commissioning and to inform the design of a future study of community-based service delivery models, we held two rounds of discussions with four groups of people affected by young onset dementia (n = 31) and interviewed memory services (n = 3) and non-profit service providers (n = 7) in two sites in England. Discussions confirmed published evidence on support requirements, but also reframed priorities for support and suggested new approaches to dementia care at the community level. This paper argues that involving people with young onset dementia in the assessment of research findings in terms of what is important to them, and inviting suggestions for solutions, provides a way for co-designing services that address the challenges of accessing support for people affected by young onset dementia.
Original languageEnglish
Pages (from-to)1051-1066
Number of pages16
JournalDementia-International Journal of Social Research and Practice
Issue number4
Early online date19 Aug 2018
Publication statusPublished - 1 May 2020


  • Age-appropriate dementia care
  • continuity
  • co-production
  • young onset dementia

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