Recruitment of Individuals With Dementia and Their Carers for Social Research: Lessons Learned From Nine Studies
Many health and social care research studies report difficulties recruiting sufficient numbers of participants, adding to time and money expenditures and potentially jeopardizing the generalizability of findings. The current article reports the effectiveness and resource requirements of recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. The use of service providers to aid recruitment yielded mixed results, but was lengthy in terms of research time. Online and social media were low cost but not reliably effective in terms of recruitment potential. Despite using multiple strategies to maximize recruitment, significant challenges were encountered achieving the required sample sizes; in most cases these challenges resulted in delays in the recruitment phase. Implications for researchers in the fields of dementia and general social/health research are discussed.
[Res Gerontol Nurs. 2018; 11(3):119–128.]
- Austin-Wells V., McDougall G.J., Becker H. (2006). Recruiting and retaining an ethnically diverse sample of older adults in a longitudinal intervention study. Educational Gerontology, 32, 159–170.
10.1080/03601270500388190Crossref, Google Scholar
- Beattie E., Burgener S., Horner B. (2010). Examining perceived stigma in veterans with dementia. Unpublished funding proposal to Department of Veteran's Affairs, Australia. Google Scholar
- Beattie E., Dowling G., O'Reilly M., Merrilees J., Moskovitz J., Mastick J. (2010). Life enhancing activities for family caregivers (LEAF). Unpublished funding proposal to Atlantic Philanthropies USA. Google Scholar
- Beattie E., Horner B., Moyle W., Burgener S., Wellman D. (2013). Examining perceived stigma in persons with progressive memory loss such as dementia: An Australian study. Brisbane, Australia: Dementia Collaborative Research Centre. Google Scholar
- Beattie E., Kimlin M., O'Reilly M. (2010). Vitamin D deficits in community dwelling people with dementia and their carers. Unpublished funding proposal to Queensland University of Technology Institute of Health and Behavioural Innovation. Google Scholar
- Beattie E., MacAndrew M., McCrow J., Stirling C., Bramble M., Bucher H. (2011). Caregiver strategies for managing wandering in people with dementia in the community. Unpublished proposal for unfunded research. Google Scholar
- Beattie E., McCrow J., Dyce C., Fielding E., Isenring E. (2014). Nutritional challenges for the family caregiver and person with dementia dyad. Journal of Aging Research and Clinical Practice, 3, 41–46. Google Scholar
- Beattie E., O'Reilly M., Moyle W., Chenoweth L., Fetherstonhaugh D., Horner B., Fielding E. (2015). Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study. International Psychogeriatrics, 27, 1739–1747.
10.1017/S1041610215000435Crossref, Google Scholar
- Black B.S., Wechsler M., Fogarty L. (2013). Decision making for participation in dementia research. American Journal of Geriatric Psychiatry, 21, 355–363.
10.1016/j.jagp.2012.11.009Crossref, Google Scholar
- Brooks D., Fielding E., MacAndrew M., Jeavons S. (2016). Transitioning to residential care: Advice from carers to carers. Retrieved from http://dementiakt.com.au/resource/taking_care_of_yourself Google Scholar
- Burgener S.C., Buckwalter K., Perkhounkova Y., Liu M.F., Riley R., Einhorn C.J., Hahn-Swanson C. (2015). Perceived stigma in persons with early-stage dementia: Longitudinal findings. Dementia, 14, 589–608.
10.1177/1471301213508399Crossref, Google Scholar
- Cohen-Mansfield J. (2002). Recruitment rates in gerontological research: The situation for drug trials in dementia may be worse than previously reported. Alzheimer Disease and Associated Disorders, 16, 279–282.
10.1097/00002093-200210000-00010Crossref, Google Scholar
- Dangour A.D., Allen E., Richards M., Whitehouse P., Uauy R. (2010). Design considerations in long-term intervention studies for the prevention of cognitive decline or dementia. Nutrition Reviews, 68, S16–S21.
10.1111/j.1753-4887.2010.00330.xCrossref, Google Scholar
- Dibartolo M.C., McCrone S. (2003). Recruitment of rural community-dwelling older adults: Barriers, challenges, and strategies. Aging & Mental Health, 7, 75.
10.1080/1360786031000072295Crossref, Google Scholar
- Dowling G.A., Merrilees J., Mastick J., Chang V.Y., Hubbard E., Moskowitz J.T. (2014). Life enhancing activities for family caregivers of people with frontotemporal dementia. Alzheimer Disease and Associated Disorders, 28, 175–181.
10.1097/WAD.0b013e3182a6b905Crossref, Google Scholar
- Eichler T., Thyrian J.R., Hertel L., Köhler L., Wucherer D., Dreier A., Hoffmann W. (2014). Rates of formal diagnosis in people screened positive for dementia in primary care: Results of the Delphi trial. Journal of Alzheimer's Disease, 42, 451–458.
10.3233/JAD-140354Crossref, Google Scholar
- Fielding E., Beattie E., Gresham M., Neville C., Readford M. (2012). Building better respite: Hearing the voices of carers. Australian Journal of Dementia Care, 1(4), 16–18. Google Scholar
- Fielding E., Beattie E., O'Reilly M., McMaster M. (2016). Achieving a national sample of nursing homes: Balancing probability techniques and practicalities. Research in Gerontological Nursing, 9, 58–65.
10.3928/19404921-20151019-03Link, Google Scholar
- Fielding E., Beattie E., Readford M., Neville C., Gresham M. (2012). Summary of “Respite care in dementia: Carer perspectives”: Report on full study. Brisbane, Australia: Dementia Collaborative Research Centre: Carers and Consumers. Google Scholar
- Fielding E., McMaster M., Brooks D., O'Reilly M., MacAndrew M., Beattie E. (2016). Residential placement transitions. Brisbane, Australia: Dementia Collaborative Research Centre: Carers and Consumers. Google Scholar
- Gaugler J.E., Wall M.M., Kane R.L., Menk J.S., Sarsour K., Johnston J.A., Newcomer R. (2010). The effect of incident and persistent behavioral problems on change in caregiver burden and nursing home admission of persons with dementia. Medical Care, 48, 875–883.
10.1097/MLR.0b013e3181ec557bCrossref, Google Scholar
- Gonzalez E.W., Gardner E.M., Murasko D. (2007). Recruitment and retention of older adults in influenza immunization study. Journal of Cultural Diversity, 14, 81–87. Google Scholar
- Grill J.D., Galvin J.E. (2014). Facilitating Alzheimer's disease research recruitment. Alzheimer Disease and Associated Disorders, 28, 1–8.
10.1097/WAD.0000000000000016Crossref, Google Scholar
- Kolanowski A., Mulhall P., Yevchak A., Hill N., Fick D. (2013). The triple challenge of recruiting older adults with dementia and high medical acuity in skilled nursing facilities. Journal of Nursing Scholarship, 45, 397–404.
10.1111/jnu.12042Crossref, Google Scholar
- Lowery D.P., Warner J., Cerga-Pashoja A., Thune-Boyle I., Iliffe S. (2011). Clinicians as recruiters to dementia trials: Lessons from the EVIDEM-E project. International Journal of Geriatric Psychiatry, 26, 765–769.
10.1002/gps.2671Crossref, Google Scholar
- Marcantonio E.R., Aneja J., Jones R.N., Alsop D.C., Fong T.G., Crosby G.J., Inouye S.K. (2008). Maximizing clinical research participation in vulnerable older persons: Identification of barriers and motivators. Journal of the American Geriatrics Society, 56, 1522–1527.
10.1111/j.1532-5415.2008.01829.xCrossref, Google Scholar
- Markgraf T.S., Wharton W., Cleary C., Lorenze K., Zeisse M., Daun M., Asthana S. (2009). Recruiting for Alzheimer's disease research: A systematic review of recruitment techniques and challenges among NIH-funded ADRCs. Alzheimer's & Dementia, 5, P242–P243.
10.1016/j.jalz.2009.04.233Crossref, Google Scholar
- McKeown J., Clarke A., Ingleton C., Repper J. (2010). Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19, 1935–1943.
10.1111/j.1365-2702.2009.03136.xCrossref, Google Scholar
- McMurdo M.E., Roberts H., Parker S., Wyatt N., May H., Goodman C., Dyer C. (2011). Improving recruitment of older people to research through good practice. Age & Ageing, 40, 659–665.
10.1093/ageing/afr115Crossref, Google Scholar
- Mody L., Miller D.K., McGloin J.M., Freeman M., Marcantonio E.R., Magaziner J., Studenski S. (2008). Recruitment and retention of older adults in aging research. Journal of the American Geriatrics Society, 56, 2340–2348.
10.1111/j.1532-5415.2008.02015.xCrossref, Google Scholar
- Morrison K., Winter L., Gitlin L.N. (2016). Recruiting community-based dementia patients and caregivers in a nonpharmacologic randomized trial: What works and how much does it cost?Journal of Applied Gerontology, 35, 788–800.
10.1177/0733464814532012Crossref, Google Scholar
- National Health and Medical Research CouncilAustralian Research CouncilAustralian Vice-Chancellors' Committee. (2015). National statement on ethical conduct in human research. Retrieved from https://www.nhmrc.gov.au/guidelines-publications/e72 Google Scholar
- Neville C., Beattie E., Fielding E., MacAndrew M. (2015). Literature review: Use of respite by carers of people with dementia. Health and Social Care in the Community, 23, 51–63.
10.1111/hsc.12095Crossref, Google Scholar
- Nichols L., Martindale-Adams J., Burns R., Coon D., Ory M., Mahoney D., Winter L. (2004). Social marketing as a framework for recruitment: Illustrations from the REACH study. Journal of Aging & Health, 16, 157S–176S.
10.1177/0898264304269727Crossref, Google Scholar
- O'Dwyer S.T., Moyle W. (2014). Using Google Adwords to recruit family carers of people with dementia. Australasian Journal on Ageing, 33, 128–131.
10.1111/ajag.12100Crossref, Google Scholar
- O'Reilly M., Beattie E., Neville C., Fielding E., MacAndrew M. (2016a). Residential respite care transitions: Resources for family carers. Retrieved from http://dementiakt.com.au/resource/residential-respite-care-transitions-famcarers Google Scholar
- O'Reilly M., Beattie E., Neville C., Fielding E., MacAndrew M. (2016b). Residential respite care transitions: Resources for residential aged care facilities. Retrieved from http://dementiakt.com.au/resource/residential-respite-care-transitions-racf Google Scholar
- O'Reilly M., Fielding E., Beattie E. (2014, December19). Getting the most out of respite care: Respite care guide. Retrieved from http://dementiakt.com.au/resource/respitecareguide Google Scholar
- O'Reilly M., Fielding E., MacAndrew M., Beattie E. (2016). A person-centred model of residential respite care transition support: The Transition Support-Person Centred Care Program for family caregivers and care recipients with dementia. Canberra, Australia: Australian Department of Social Services. Google Scholar
- Pesonen H.M., Remes A.M., Isola A. (2011). Ethical aspects of researching subjective experiences in early-stage dementia. Nursing Ethics, 18, 651–661.
10.1177/0969733011408046Crossref, Google Scholar
- Prince M., Bryce R., Ferri C. (2011). World Alzheimer Report 2011: The benefits of early diagnosis and intervention. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2011.pdf Google Scholar
- Provencher V., Mortenson W.B., Tanguay-Garneau L., Bélanger K., Dagenais M. (2014). Challenges and strategies pertaining to recruitment and retention of frail elderly in research studies: A systematic review. Archives of Gerontology and Geriatrics, 59, 18–24.
10.1016/j.archger.2014.03.006Crossref, Google Scholar
- Schulz R., Martire L.M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12, 240–249.
10.1097/00019442-200405000-00002Crossref, Google Scholar
- Shatenstein B., Kergoat M.J., Reid I. (2008). Issues in recruitment, retention, and data collection in a longitudinal nutrition study of community-dwelling older adults with early-stage Alzheimer's dementia. Journal of Applied Gerontology, 27, 267–285.
10.1177/0733464807311655Crossref, Google Scholar
- Sullivan-Bolyai S., Bova C., Deatrick J.A., Knafl K., Grey M., Leung K., Trudeau A. (2007). Barriers and strategies for recruiting study participants in clinical settings. Western Journal of Nursing Research, 29, 486–500.
10.1177/0193945907299658Crossref, Google Scholar
- Szabo S.M., Whitlach C.J., Orsulic-Jeras S., Johnson J.D. (2016). Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice). Dementia. Advance online publication.
10.1177/1471301216659608Crossref, Google Scholar
- Tarlow B.A., Mahoney D.F. (2000). The cost of recruiting Alzheimer's disease caregivers for research. Journal of Aging & Health, 12, 490–510.
10.1177/089826430001200403Crossref, Google Scholar
- Tsai P.F., Chang J.Y., Chowdhury N., Beck C., Roberson P.K., Rosengren K. (2009). Enrolling older adults with cognitive impairment in research: Lessons from a study of tai chi for osteoarthritis knee pain. Research in Gerontological Nursing, 2, 228–234.
10.3928/19404921-20090731-03Crossref, Google Scholar
- Whitebird R.R., Kreitzer M.J., Lewis B.A., Hanson L.R., Crain A.L., Enstad C.J., Mehta A. (2011). Recruiting and retaining family caregivers to a randomized controlled trial on mindfulness-based stress reduction. Contemporary Clinical Trials, 32, 654–661.
10.1016/j.cct.2011.05.002Crossref, Google Scholar
- Wimo A., Guerchet M., Ali G.C., Wu Y.T., Prina A.M., Winblad B., Prince M. (2017). The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimer's & Dementia, 13, 1–7.
10.1016/j.jalz.2016.07.150Crossref, Google Scholar
- Yu F. (2013). Improving recruitment, retention and adherence to 6-month cycling in Alzheimer's disease. Geriatric Nursing, 34, 181–186.
10.1016/j.gerinurse.2012.12.014Crossref, Google Scholar