Strategies to Improve Research Participation By Older People With Cognitive Impairment: A Systematic Review

Lucinda Swan; Slavica Kochovska; Nola Ries; Imelda Gilmore; Deborah Parker; Craig Sinclair; Caitlin Sheehan; Aileen Collier; Elizabeth Lobb; Linda Sheahan; Linda Brown; Michael Chapman; Wei Lee; Ingrid Amgarth-Duff; Timothy To; Meera R Agar; Annmarie Hosie

doi:10.1093/geront/gnae188

Strategies to Improve Research Participation By Older People With Cognitive Impairment: A Systematic Review

Gerontologist. 2025 May 10;65(6):gnae188. doi: 10.1093/geront/gnae188.

Authors

Lucinda Swan^{1

2}, Slavica Kochovska^{3

4}, Nola Ries⁵, Imelda Gilmore³, Deborah Parker³, Craig Sinclair⁶, Caitlin Sheehan^{3

7}, Aileen Collier^{8

9}, Elizabeth Lobb^{3

7}, Linda Sheahan^{3

10

11}, Linda Brown³, Michael Chapman^{12

13}, Wei Lee^{3

14}, Ingrid Amgarth-Duff^{15

16}, Timothy To¹⁷, Meera R Agar³, Annmarie Hosie^{1

3}

Affiliations

¹ Faculty of Medicine, Nursing, Midwifery and Health Sciences, University of Notre Dame Australia, Darlinghurst, New South Wales, Australia.
² St Vincent's Health Network Sydney, Darlinghurst, New South Wales, Australia.
³ IMPACCT (Improving Palliative, Aged and Chronic Care through Research and Translation), Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia.
⁴ Faculty of Science, Medicine and Health, University of Wollongong, New South Wales, Australia.
⁵ Faculty of Law, University of Technology Sydney, Ultimo, New South Wales, Australia.
⁶ School of Psychology, University of New South Wales, Kensington, New South Wales, Australia.
⁷ Palliative Care Department, Calvary Health Care Kogarah, Kogarah, New South Wales, Australia.
⁸ Research Centre for Palliative Care Death and Dying, Flinders University, Adelaide, South Australia, Australia.
⁹ Northern Adelaide Local Health Network, Adelaide, South Australia, Australia.
¹⁰ Clinical Ethics Service, South Eastern Sydney Local Health District, Randwick, New South Wales, Australia.
¹¹ Sydney Health Ethics, University of Sydney, Camperdown, New South Wales, Australia.
¹² Department of Palliative Care, Canberra Health Services, Canberra Hospital, Garran, Australian Capital Territory, Australia.
¹³ School of Medicine, Australian National University, Australian Capital Territory, Australia.
¹⁴ HammondCare North, Greenwich, NSW 2065, Australia.
¹⁵ Wesfarmers Centre of Vaccines and Infectious Diseases, The Kids Research Institute Australia, Nedlands, WA, Australia.
¹⁶ Centre for Child Health Research, University of Western Australia, Nedlands, WA, Australia.
¹⁷ College of Medicine and Public Health, Flinders Health and Medical Research Institute, Adelaide, South Australia, Australia.

PMID: 39693265
DOI: 10.1093/geront/gnae188

Abstract

Background and objectives: Older people with cognitive impairment are unrepresented in clinical research. Our objective was to review evidence for strategies to support their research inclusion and participation.

Research design and methods: Systematic review of published reports of inclusion and participation strategies for older people with cognitive impairment in clinical research (PROSPERO CRD42020212092). 5 databases were searched in September 2020, March 2023, and April 2024. Screening, full-text review, and data extraction were independently performed. The risk of bias was assessed using Scottish Intercollegiate Guidelines Network Methodology Checklists. Outcomes were participant characteristics, recruitment and consent processes, retention, experience, involvement of others, adverse events, and other reported outcomes.

Results: Of 4,564 identified sources, 12 studies were included. 9 compared recruitment strategies; 3 examined consent processes. Of 4,208 participants (mean age 78.3 years), 61% were female. Median (interquartile range) monthly recruitment rate was 10.3 (5.6-14.8). Participants had mild cognitive impairment, dementia, and/or delirium, and two-thirds of the studies involved proxies or study partners. Community outreach or population screening had higher recruitment compared with primary care referral and/or screening. Formal capacity and consent methods achieved lower rates of consent compared with informal. A memory and organizational aid increased participants' ability to provide informed consent compared with standard assessment. Few studies reported participants' or recruiters' subjective experience, and no studies reported participant retention or adverse events.

Discussion and implications: Targeted, tailored, and multi-pronged recruitment and consent strategies to support the inclusion of older people with cognitive impairment appear promising. Higher-quality studies are needed to confirm this finding.

Keywords: Analysis—Systematic review; Cognition; Decision making; Dementia; Ethics (research, practice, policy, individual choices).

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Publication types

Systematic Review

MeSH terms

Aged
Aged, 80 and over
Biomedical Research*
Cognitive Dysfunction* / psychology
Female
Humans
Informed Consent
Male
Patient Participation*
Patient Selection*