TY - JOUR

T1 - “It’s a Postcode Lottery”: How Do People Affected by Dementia in Wales Experience Their Diagnosis and Post-Diagnostic Support, and How May These Be Improved?

AU - Roberts, Jennifer

AU - Windle, Gill

AU - MacLeod, Catherine

AU - Sullivan, Mary Pat

AU - Camic, Paul

AU - Stott, Joshua

AU - Brotherhood, Emilie

AU - Jackson, Kiara

AU - Crutch, Sebastian

PY - 2024/5/30

Y1 - 2024/5/30

N2 - National dementia strategies are government policies that guide the provision of appropriate support for people living with dementia. These strategies, developed through extensive stakeholder engagement, should be tailored to the cultural and demographic needs of a country. Using a mixed methods survey design, this study explored the aims of the Dementia Action Plan (2018–2022) for Wales (UK) around assessment, diagnosis, and post-diagnostic support, and assessedwhether these are being realized. Further, it sought to gain insight from people living with dementia and their carers around how the experience may be improved for others in the future, as the development of the next iteration of the Action Plan is anticipated. Respondents included 71 people, affected by typical and rarer types of dementia, living in both rural and urban areas. Findings suggest both positive and negative experiences, reflecting a ‘postcode lottery’ of service provision. Attainable recommendations for improvement were made by respondents, which would ultimately likely be cost-effective and reduce strain on formal services. The findings reported in this paper concur with those reported by people living with dementia in other countries, indicating their relevance for policymakers beyond Wales.

AB - National dementia strategies are government policies that guide the provision of appropriate support for people living with dementia. These strategies, developed through extensive stakeholder engagement, should be tailored to the cultural and demographic needs of a country. Using a mixed methods survey design, this study explored the aims of the Dementia Action Plan (2018–2022) for Wales (UK) around assessment, diagnosis, and post-diagnostic support, and assessedwhether these are being realized. Further, it sought to gain insight from people living with dementia and their carers around how the experience may be improved for others in the future, as the development of the next iteration of the Action Plan is anticipated. Respondents included 71 people, affected by typical and rarer types of dementia, living in both rural and urban areas. Findings suggest both positive and negative experiences, reflecting a ‘postcode lottery’ of service provision. Attainable recommendations for improvement were made by respondents, which would ultimately likely be cost-effective and reduce strain on formal services. The findings reported in this paper concur with those reported by people living with dementia in other countries, indicating their relevance for policymakers beyond Wales.

KW - dementia

KW - public health

KW - dementia strategy

KW - rarer dementias

KW - rural

KW - lived experience

KW - diagnosis

KW - post-diagnostic support

U2 - 10.3390/ijerph21060709

DO - 10.3390/ijerph21060709

M3 - Article

VL - 21

JO - International Journal of Environmental Research and Public Health

JF - International Journal of Environmental Research and Public Health

SN - 1660-4601

IS - 6

M1 - 709

ER -