TY - CONF

T1 - Developing bi-lingual peer guides to living with dementia: the Knowledge is Power series

AU - Jones, Catrin Hedd

AU - Roberts, Jennifer

AU - Caulfield, Maria

AU - Windle, Gill

N1 - Conference code: 33rd

PY - 2023/10

Y1 - 2023/10

N2 - A diagnosis of dementia can be life-altering with post-diagnosis support advice often described as overwhelming or lacking. Recent research on resilience suggests that a sense of purpose and peer support contribute to a strengths-based approach. The Knowledge is Power series developed from discussions within a peer group of dementia advocates and educators working together to share important information and useful adaptations for people following a diagnosis of dementia to maintain or explore new interests. Human-centered design principles informed the creative process adopting four phases to Discover, Define, Develop, and Deliver the booklets. Members of Dementia Engagement and Empowerment Project (DEEP) groups across Wales were invited to suggest the content based on their own experiences and were instrumental in the booklet design and promotion. Academics and Graphic designers helped to format, translate, and distribute the booklets. Hard copies and online versions of the first bilingual Knowledge is Power 1 booklet in Wales (Welsh and English) have been distributed to health and social care practitioners, third-sector organisations, and members living with dementia. The second edition, “Knowledge is Power 2: Handy and helpful tips for day-to-day life with dementia” was completed in 2022. Feedback from the first edition informed a revised edition in 2023 with increasing demand for copies. A bilingual (Scottish Gaelic and English) booklet was subsequently created in Scotland highlighting the importance of providing information that is accessible and respects people's native language. Information on the process and feedback will be shared to support others that may wish to develop national post-diagnosis resources. This contributes to the process of co-creating support with rather than for people living with dementia.

AB - A diagnosis of dementia can be life-altering with post-diagnosis support advice often described as overwhelming or lacking. Recent research on resilience suggests that a sense of purpose and peer support contribute to a strengths-based approach. The Knowledge is Power series developed from discussions within a peer group of dementia advocates and educators working together to share important information and useful adaptations for people following a diagnosis of dementia to maintain or explore new interests. Human-centered design principles informed the creative process adopting four phases to Discover, Define, Develop, and Deliver the booklets. Members of Dementia Engagement and Empowerment Project (DEEP) groups across Wales were invited to suggest the content based on their own experiences and were instrumental in the booklet design and promotion. Academics and Graphic designers helped to format, translate, and distribute the booklets. Hard copies and online versions of the first bilingual Knowledge is Power 1 booklet in Wales (Welsh and English) have been distributed to health and social care practitioners, third-sector organisations, and members living with dementia. The second edition, “Knowledge is Power 2: Handy and helpful tips for day-to-day life with dementia” was completed in 2022. Feedback from the first edition informed a revised edition in 2023 with increasing demand for copies. A bilingual (Scottish Gaelic and English) booklet was subsequently created in Scotland highlighting the importance of providing information that is accessible and respects people's native language. Information on the process and feedback will be shared to support others that may wish to develop national post-diagnosis resources. This contributes to the process of co-creating support with rather than for people living with dementia.

M3 - Paper

T2 - Alzheimer's Europe- New opportunities in dementia care, policy and research

Y2 - 16 October 2023 through 18 October 2023

ER -