{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T18:37:29Z","timestamp":1792089449290,"version":"4.4.0"},"reference-count":18,"publisher":"BMJ","issue":"11","funder":[{"DOI":"10.13039\/501100007602","name":"Programme Grants for Applied Research","doi-asserted-by":"publisher","award":["RP-PG-0610-10108"],"award-info":[{"award-number":["RP-PG-0610-10108"]}],"id":[{"id":"10.13039\/501100007602","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2019,10,3]]},"published-print":{"date-parts":[[2019,11]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Research 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 \u2018dyads\u2019 (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?<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Secondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings<\/jats:title>\n                    <jats:p>At 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 \u2018managing\u2019, time constraints, adjusting to a diagnosis of dementia and burden of study procedures.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Successful 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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2019-030829","type":"journal-article","created":{"date-parts":[[2019,11,20]],"date-time":"2019-11-20T05:16:44Z","timestamp":1574227004000},"page":"e030829","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":34,"title":["Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia"],"prefix":"10.1136","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3502-2691","authenticated-orcid":false,"given":"Becky","family":"Field","sequence":"first","affiliation":[{"name":"School of Health and Related Research, Faculty of Medicine Dentistry and Health, University of Sheffield, Sheffield, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gail","family":"Mountain","sequence":"additional","affiliation":[{"name":"School of Health and Related Research, Faculty of Medicine Dentistry and Health, University of Sheffield, Sheffield, UK"},{"name":"Centre for Applied Dementia Studies, University of Bradford, Bradford, West Yorkshire, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jane","family":"Burgess","sequence":"additional","affiliation":[{"name":"Research and Development Department, North East London NHS Foundation Trust Goodmayes Hospital, Ilford, Essex, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Di Bona","sequence":"additional","affiliation":[{"name":"School of Health and Related Research, Faculty of Medicine Dentistry and Health, University of Sheffield, Sheffield, UK"},{"name":"Engagement and Experience Team, Sheffield Health and Social Care NHS Foundation Trust, Sheffield, Sheffield, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel","family":"Kelleher","sequence":"additional","affiliation":[{"name":"Research and Development Department, Humber Teaching NHS Foundation Trust, Willerby, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqueline","family":"Mundy","sequence":"additional","affiliation":[{"name":"Engagement and Experience Team, Sheffield Health and Social Care NHS Foundation Trust, Sheffield, Sheffield, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Wenborn","sequence":"additional","affiliation":[{"name":"Research and Development Department, North East London NHS Foundation Trust Goodmayes Hospital, Ilford, Essex, UK"},{"name":"Division of Psychiatry, University College London, London, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2019,11,19]]},"reference":[{"key":"2025121400453638000_9.11.e030829.1","unstructured":"Alzheimers\u2019 Disease International . World Alzheimer Report 2016|Alzheimer\u2019s Disease International, 2016. Available: http:\/\/www.alz.co.uk\/research\/world-report-2016 [Accessed 22 Sep 2016]."},{"key":"2025121400453638000_9.11.e030829.2","unstructured":"Global Action Against Dementia . G8 dementia Summit Declaration, 2013. Available: https:\/\/www.mendeley.com\/research-papers\/g8-dementia-summit-declaration\/?utm_source=desktop&utm_medium=1.17.10&utm_campaign=open_catalog&userDocumentId=%7Bf2ec44e5-4e4c-42e2-9ec0-4161c44a1e8a%7D [Accessed 31 Jul 2017]."},{"key":"2025121400453638000_9.11.e030829.3","unstructured":"Department of Health . Prime Minister\u2019s challenge on dementia 2020. London, 2015. Available: http:\/\/www.dh.gov.uk\/en\/Publicationsandstatistics\/Publications\/PublicationsPolicyAndGuidance"},{"key":"2025121400453638000_9.11.e030829.4","first-page":"1","article-title":"Strategies to improve recruitment of people with dementia to research studies","volume":"0","author":"Bartlett","year":"2018","journal-title":"Dementia"},{"key":"2025121400453638000_9.11.e030829.5","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610214001203"},{"key":"2025121400453638000_9.11.e030829.6","doi-asserted-by":"crossref","first-page":"767","DOI":"10.1002\/gps.2671","article-title":"Clinicians as recruiters to dementia trials: lessons from the EVIDEM-E project","volume":"26","author":"Lowery","year":"2011","journal-title":"Int J Geriatr Psychiatry"},{"key":"2025121400453638000_9.11.e030829.7","doi-asserted-by":"publisher","DOI":"10.1002\/gps.4034"},{"key":"2025121400453638000_9.11.e030829.8","doi-asserted-by":"crossref","DOI":"10.1186\/s13063-015-1150-y","article-title":"Community occupational therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID] programme): study protocol for a randomised controlled trial","volume":"17","author":"Wenborn","year":"2016","journal-title":"Trials"},{"key":"2025121400453638000_9.11.e030829.9","unstructured":"Alzheimer\u2019s Disease International . Participation in dementia trials and studies: challenges and recommendations. Paper prepared for Global Action Against Dementia by Alzheimer\"s Disease International member charities. 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Research protocol for a complex intervention to support hearing and vision function to improve the lives of people with dementia. Pilot Feasibility Stud 2017;3.doi:10.1186\/s40814-017-0176-1","DOI":"10.1186\/s40814-017-0176-1"},{"key":"2025121400453638000_9.11.e030829.17","unstructured":"The Dementia Engagement and Empowerment Project (DEEP) . Deep guides | deep, 2016. 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