Trial reportPloS one2016
Black African and Caribbean British Communities' Perceptions of Memory Problems: "We Don't Do Dementia.".
Trial report in PloS one, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 6 of them syntheses that pooled 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.
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.
Who cites it
35 citing papers in PubMed, 6 syntheses or guidelines pooled it, 96 citations in OpenAlex.
- What Works Well for People With Dementia and Their Supporters From South Asian, African and Caribbean Communities in the UK: A Narrative Synthesis Systematic Review and Expert Consultations.International journal of geriatric psychiatry · 2025Pooled it
- The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review.Frontiers in public health · 2025Pooled it
- Promotors and barriers to the implementation and adoption of assistive technology and telecare for people with dementia and their caregivers: a systematic review of the literature.BMC health services research · 2022Pooled it
- Socio-Economic Disparities in Access to Diagnostic Neuroimaging Services in the United Kingdom: A Systematic Review.International journal of environmental research and public health · 2021Pooled it
- Access to Health Services in Older Minority Ethnic Groups with Dementia: A Systematic Review.Journal of the American Geriatrics Society · 2021Pooled it
- What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys.PloS one · 2018Pooled it
- The IDEMCare Study-Improving Dementia Care in Black African and Caribbean Groups: A feasibility cluster randomised controlled trial.International journal of geriatric psychiatry · 2018Trial
- Article
- Memory and thinking problems that aging Latinos in New York City would bring to a doctor's attention.PloS one · 2026Article
- A thematic analysis of Lay knowledge and beliefs about dementia among first-generation Black African immigrants from West Africa living in London: Informed by a grounded theory approach.Journal of public health research · 2025Article
- Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review.Journal of racial and ethnic health disparities · 2025Article
- A multiperspective investigation of the underrepresentation of minoritized ethnic participants in dementia research and proposed strategies to improve inclusive recruitment practices.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- "It may just be aging": illness representations of Brazilians with Alzheimer's disease.Cadernos de saude publica · 2025Article
- Religious participation is associated with fewer dementia diagnoses among Black people in the United States.American journal of human biology : the official journal of the Human Biology Council · 2024Article
- Understanding dementia in minority ethnic communities: The perspectives of key stakeholders interviewed as part of the IDEAL programme.Dementia (London, England) · 2024Article
- Improving Conversations about Parkinson's Dementia.Movement disorders clinical practice · 2024Article
- Dementia-Friendly Communities: Exploring Terms used to Describe Dementia, Attitudes and Reactions Towards People with Dementia in Ilembe District, South Africa.Dementia (London, England) · 2023Article
- Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study.International journal of geriatric psychiatry · 2023Article
- The Development and Validation of the Threat of Dementia Scale.International journal of aging & human development · 2022Article
- Societal and equity challenges for Brain Health Services. A user manual for Brain Health Services-part 6 of 6.Alzheimer's research & therapy · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
objectivesWe aimed to identify and explore the barriers to help-seeking for memory problems, specifically within UK Black African and Caribbean communities.
methodWe purposively recruited participants from community groups and subsequent snowball sampling, to achieve a maximum variation sample and employed thematic analysis. Our qualitative semi-structured interviews used a vignette portraying a person with symptoms of dementia, and we asked what they or their family should do. We stopped recruiting when no new themes were arising. RESULTS AND SIGNIFICANCE: We recruited 50 people from a range of age groups, country of origin, time in the UK, religion and socio-economic background. Some of the barriers to presentation with dementia have been reported before, but others were specific to this group and newly identified. Many people recognised forgetfulness but neither that it could be indicative of dementia, nor the concept of dementia as applying to them. Dementia was viewed as a white person's illness. Participants felt there was little point in consulting a doctor for forgetfulness. Many thought that seeing a GP was only for severe problems. Some said that their culture was secretive and highly valued privacy of personal affairs and therefore did not want to discuss what they regarded as a private and stigmatising problem with a GP. Participants did not appreciate their GP could refer to memory services who have more time and expertise. They were concerned about harm from medication and compulsory institutionalisation. Care should be from the family. Any intervention should emphasise the legitimacy of seeing a doctor early for memory concerns, that dementia is a physical illness which also occurs in the Black community, that help and time are available from memory services whose role is to prolong independence and support families in caring.
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What OpenQuestion holds
Registered trials
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.