ArticleBMJ open2019
Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis 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
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Recruiting Persons With Dementia: A Systematic Review of Facilitators, Barriers, and Strategies.American journal of Alzheimer's disease and other dementiasPooled it
- Exercise interveNtion outdoor proJect in the cOmmunitY - results from the ENJOY program for independence in dementia: a feasibility pilot randomised controlled trial.BMC geriatrics · 2023Trial
- Embedding patient and public involvement in dementia research: Reflections from experiences during the 'Journeying through Dementia' randomised controlled trial.Dementia (London, England) · 2022Trial
- An intervention to promote self-management, independence and self-efficacy in people with early-stage dementia: the Journeying through Dementia RCT.Health technology assessment (Winchester, England) · 2022Trial
- Clinician and Client Reports of the Negative Effects of Neuropsychological Assessment for Dementia.Journal of geriatric psychiatry and neurology · 2026Article
- Development of a Serious Game App (Digimenz) for Patients With Dementia: Prospective Pilot Study for Usability Testing in Inpatient Treatment and Long-Term Care.JMIR serious games · 2025Article
- Insights from recruiting individuals with mild dementia and care partners for a multi-site oral hygiene intervention.Aging and health research · 2025Article
- Implementing reablement for community dwelling people with dementia: A formative evaluation using single-case experimental design.Dementia (London, England) · 2025Article
- Engaging With a Community of Practice in Dementia: Impacts on Skills, Knowledge, Networks and Accessing Support.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life care.Palliative care and social practice · 2025Article
- How Do Researchers Identify and Recruit Dementia Caregivers? A Scoping Review.The Gerontologist · 2024Article
- The Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: a feasibility and acceptability study.Pilot and feasibility studies · 2024Article
- Reaching the unheard: overcoming challenges in health research with hard-to-reach populations.International journal for equity in health · 2024Review
- Forward with Dementia: process evaluation of an Australian campaign to improve post-diagnostic support.BMC health services research · 2023Article
- Using community-based geographical information system (GIS) to recruit older Asian Americans in an Alzheimer's disease study.BMJ open · 2023Review
- Recruitment of older adult-caregiver dyads during the COVID-19 pandemic: an example from a study to evaluate a novel activities of daily living (ADL) sensor system.Frontiers in dementia · 2023Article
- The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis.Journal of geriatric psychiatry and neurology · 2022Article
- What influences uptake of psychosocial interventions by people living with early dementia? A qualitative study.Dementia (London, England) · 2021Article
- Recruitment of Older Adults With Dementia for Research: An Integrative Review.Research in gerontological nursingReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
objectiveTo share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.
backgroundResearch publications always cite participant numbers but the effort expended to achieve the sample size is rarely reported, even when the study involved recruiting a hard to reach population. A multisite study of a psychosocial intervention for people with dementia illustrates the challenges. This study recruited 468 'dyads' (a person with dementia and a family carer together) from 15 sites but the time taken to achieve this was longer than originally estimated. This led to a study extension and the need for additional sites. Recruitment data revealed that certain sites were more successful than others, but why? Can the knowledge gained be used to inform other studies?
methodsSecondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.
findingsAt all three sites, the pool of potential recruits funnelled to a few participants. It took two sites 18 months longer than the third to achieve recruitment numbers despite additional efforts. Explanations given by potential participants for declining to take part included ill health, reporting they were 'managing', time constraints, adjusting to a diagnosis of dementia and burden of study procedures.
conclusionsSuccessful recruitment of people with dementia to studies, as one example of a hard to reach group, requires multiple strategies and close working between researchers and clinical services. It requires a detailed understanding of the needs and perspectives of the specific population and knowledge about how individuals can be supported to participate in research. Experiences of recruitment should be disseminated so that knowledge generated can be used to inform the planning and implementation of future research studies.
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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.