Knowledge Is Power: Utilizing Human-Centered Design Principles with People Living with Dementia to Co-Design a Resource and Share Knowledge with Peers

Int J Environ Res Public Health. 2023 Oct 18;20(20):6937. doi: 10.3390/ijerph20206937.

Abstract

This paper describes the process used by a group of people living with young-onset dementia to inform the development and delivery of a post-diagnosis peer guide. It draws on the four stages of human-centered design and applies them in a new context of supporting resilience for people following a diagnosis of dementia. (1) Discover: The group discussed in-depth their perspectives on what it takes to be resilient while living with dementia and how this can be maintained. (2) Define: The group decided to collate practical information and knowledge based on their personal experiences into a booklet to support the resilience of others following a diagnosis of dementia. (3) Develop: The booklet was designed and developed together with input from other people living with dementia, facilitated by the authors. (4) Deliver: The group guided the professional production of the booklet 'Knowledge is Power'. Over 8000 copies have been distributed to memory clinics, post-diagnostic support organizations and people living with dementia across Wales. A bilingual English-Scottish Gaelic adaptation and an adaptation for people in England have since been developed. The success of 'Knowledge is Power' highlights the importance of working alongside people with dementia to share knowledge and support their resilience.

Keywords: co-design; dementia; diagnosis; lived experience; peer support; post-diagnosis support; public health; resilience; wellbeing; young onset.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Dementia*
  • England
  • Humans
  • Peer Group
  • Wales

Grants and funding

The authors disclosed receipt of the following financial support for the co-design work, authorship and/or publication of this article: We thank the Wales Centre of Ageing and Dementia Research (CADR), a collaboration between Bangor, Swansea and Aberystwyth Universities https://www.cadr.cymru (accessed on 17 July 2023) funded by Health and Care Research Wales. CADR supported the group to undertake this work with facilitation from the authors and funded a graphic designer for professional production. Printing costs were funded by both CADR and DEEP (Dementiavoices.org.uk). This work is also supported by the Rare Dementia Support Impact project (The impact of multicomponent support groups for those living with rare dementias (ES/S010467/1)) and is funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, the NIHR or the Department of Health and Social Care. Rare Dementia Support is generously supported by the National Brain Appeal (https://www.nationalbrainappeal.org/, accessed on 17 July 2023).