ArticlePloS one2021
Key components of post-diagnostic support for people with dementia and their carers: A qualitative study.
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers, 4 of them syntheses that pooled it.
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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.
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.
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Who cites it
41 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Access to healthcare services and adherence to treatments for people with dementia among ethnic minority groups: a scoping review.Frontiers in dementia · 2026Pooled it
- Reimagining Dementia Care: A Complex Intervention Systematic Review on Optimising Social Prescribing (SP) for People Living With Dementia (PLWD) in the United Kingdom.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Reimagining Dementia Care: A Complex Intervention Systematic Review on Optimising Social Prescribing (SP) for Carers of People Living With Dementia (PLWD) in the United Kingdom.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Chinese diaspora caregivers' experiences in dementia care in high-income countries: A systematic review.Dementia (London, England) · 2023Pooled it
- Implementing a home-based personalised cognitive rehabilitation intervention for people with mild-to-moderate dementia: GREAT into Practice.BMC geriatrics · 2023Trial
- Understanding the Dementia Care Triad: Findings From a Longitudinal Qualitative Study With People Living With Dementia, Their Carers, and Their Healthcare Professionals.Dementia (London, England) · 2026Article
- Cost-effectiveness of a community-based dementia support model: evidence from a real-world economic evaluation.Cost effectiveness and resource allocation : C/E · 2026Article
- Lecanemab appropriate use recommendations for clinical practice in the UK.Journal of neurology, neurosurgery, and psychiatry · 2026Review
- Role of peer-tutors with dementia in Recovery College dementia courses: an ethnographic account.The Gerontologist · 2026Article
- Recommendations to Improve Healthcare Service Provision for Cognitive Impairment in People With Parkinson's Disease: A Mixed Methods Study of the Lived Experience Expert Perspective.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Improving Access to Cognitive Interventions for People With Dementia in Australian Community-Based Settings.Australasian journal on ageing · 2026Review
- Article
- Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium.Frontiers in medicine · 2026Article
- Patient and family perceptions of rural primary care interprofessional memory clinics for diagnosis and management of dementia: a mixed methods study.BMC health services research · 2025Article
- Living well with dementia: a qualitative interview study on family caregivers' call for more person- and family-centered dementia support.BMC geriatrics · 2025Article
- "Diagnosis in the Prime of Your Life": Facilitator Perspectives on Adapting the Living Well with Dementia (LivDem) Post-Diagnostic Course for Younger Adults.Behavioral sciences (Basel, Switzerland) · 2025Article
- Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.Alzheimer's research & therapy · 2025Article
- Implementing Arts on Prescription at Home for People Living With Dementia: A Hybrid-Effectiveness Feasibility Study.Journal of geriatric psychiatry and neurology · 2025Article
- 'It opens up a whole new world for everybody': how carers of people with dementia view the online empowered conversations communication course.Aging & mental health · 2025Article
- "How can you think about losing your mind?": A reflexive thematic analysis of adapting the LivDem group intervention for couples and families living with dementia.Dementia (London, England) · 2025Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundThere has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support.
methodsWe adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel.
resultsTwenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time.
conclusionsOur work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.
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