ArticleBMC geriatrics2023
Situating support for people living with rarer forms of dementia.
Article in BMC geriatrics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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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.
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Who cites it
7 citing papers in PubMed.
- The Impact of Caring on Psychological Wellbeing: A Qualitative Study in Carers of People Living With Behavioural-Variant Frontotemporal Dementia.Journal of geriatric psychiatry and neurology · 2026Article
- Barriers and facilitators to accessing support for people affected by rare dementias who are from culturally, ethnically and linguistically diverse backgrounds.International journal for equity in health · 2025Article
- iSupport for rare dementias: a mixed-methods non-randomised feasibility study of an online self-help programme for carers.Pilot and feasibility studies · 2025Article
- Designing an overview Theory of Change for a multi-component support community for people affected by rare dementia.Frontiers in dementia · 2025Article
- "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?International journal of environmental research and public health · 2024Article
- "A torch, a rope, a belly laugh": engaging with the multiple voices of support groups for people living with rare dementia.Frontiers in dementia · 2024Article
- The Road Less Travelled: A Micro-Costing Analysis of an Online Pre-Death Grief and Loss Programme for Carers of People with a Rare Dementia.Inquiry : a journal of medical care organization, provision and financingArticle
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAwareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery.
methodsAdopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps.
resultsRecognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated.
conclusionsThe social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions.
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