TY - JOUR

T1 - Knowledge Is Power

T2 - Utilizing Human-Centered Design Principles with People Living with Dementia to Co-Design a Resource and Share Knowledge with Peers

AU - Roberts, Jennifer

AU - Jones, Catrin Hedd

AU - Windle, Gill

PY - 2023/10/18

Y1 - 2023/10/18

N2 - 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.

AB - 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.

KW - dementia

KW - young onset

KW - co-design

KW - peer support

KW - lived experience

KW - resilience

KW - wellbeing

KW - qdiagnosis

KW - post-diagnosis

KW - support

KW - public health

U2 - https://doi.org/10.3390/ijerph20206937

DO - https://doi.org/10.3390/ijerph20206937

M3 - Article

C2 - 37887675

VL - 20

JO - International Journal of Environmental Research and Public Health

JF - International Journal of Environmental Research and Public Health

SN - 1660-4601

IS - 20

M1 - 6937

ER -