Evidence map›Paper›PMID 38928955›Full record

ArticleInternational journal of environmental research and public health2024

"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?

Jennifer Rhiannon Roberts, Gill Windle, Catherine Anne MacLeod, Mary Pat Sullivan, Paul M Camic, Joshua Stott, Emilie Brotherhood, Kiara Jackson, Sebastian Crutch, Rare Dementia Support (RDS) Research Team

Abstract read
In one paragraph

Article in International journal of environmental research and public health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Jennifer Rhiannon RobertsDSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.ORCID 0000-0002-8538-997X
Gill WindleDSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.
Catherine Anne MacLeodDSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.ORCID 0000-0002-9314-7380
Mary Pat SullivanFaculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON P1B 8L7, Canada.
Paul M CamicDementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London WC1N 3AR, UK.ORCID 0000-0002-4444-6544
Joshua StottDepartment of Clinical, Educational and Health Psychology, University College London (UCL), London WC1E 6BT, UK.
Emilie BrotherhoodDementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London WC1N 3AR, UK.ORCID 0000-0002-6244-7735
Kiara JacksonDSDC Wales Research Centre, School of Health Sciences, Bangor University, Ardudwy, Normal Site, Bangor LL57 2PZ, UK.ORCID 0000-0002-1746-3082
Sebastian CrutchDementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London WC1N 3AR, UK.
Rare Dementia Support (RDS) Research Team

Funding

ESRC NIHR ES/S010467/1
6 · The paper itself

Abstract

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.

Indexed as

DementiaAgedAged, 80 and overCaregiversFemaleHumansMaleMiddle AgedSurveys and QuestionnairesWalesdementiadementia strategydiagnosislived experiencepost-diagnostic supportpublic healthrarer dementiasrural

Identifiers

PMID38928955
PMCPMC11203760

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.