"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?

dementia dementia strategy diagnosis lived experience post-diagnostic support public health rarer dementias rural

Journal

International journal of environmental research and public health
ISSN: 1660-4601
Titre abrégé: Int J Environ Res Public Health
Pays: Switzerland
ID NLM: 101238455

Informations de publication

Date de publication:
30 May 2024
Historique:
received: 19 04 2024
revised: 21 05 2024
accepted: 28 05 2024
medline: 27 6 2024
pubmed: 27 6 2024
entrez: 27 6 2024
Statut: epublish

Résumé

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 assessed whether 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.

Identifiants

pubmed: 38928955
pii: ijerph21060709
doi: 10.3390/ijerph21060709
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : ESRC NIHR
ID : ES/S010467/1

Auteurs

Jennifer Rhiannon Roberts (JR)

DSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.

Gill Windle (G)

DSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.

Catherine Anne MacLeod (CA)

DSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.

Mary Pat Sullivan (MP)

Faculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON P1B 8L7, Canada.

Paul M Camic (PM)

Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London WC1N 3AR, UK.

Joshua Stott (J)

Department of Clinical, Educational and Health Psychology, University College London (UCL), London WC1E 6BT, UK.

Emilie Brotherhood (E)

Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London WC1N 3AR, UK.

Kiara Jackson (K)

DSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.

Sebastian Crutch (S)

Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London WC1N 3AR, UK.

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