Consent and assent to participate in research from people with dementia
Abstract
Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.
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In interviews that happened in-person, ongoing assent (or dissent) was observed during the interview process.
“In interviews that happened in-person, ongoing assent (or dissent) was observed during the interview process [25].”
From Towards defining quality in home care for persons living with dementia (2022) · cites this paper as [25]
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- Authors
- Slaughter, S., Cole, D., Jennings, E., & Reimer, M. A.
- Affiliations
- University of Calgary (CA)
- Calgary Health Region (CA)
- University of Manitoba (CA)
- Corresponding author
- Slaughter, Susan
- ORCID
- Slaughter, Susan
- Venue
- Nursing Ethics
- Publisher
- SAGE Publications
- Published
- 2007-01
- Volume
- 14
- Issue
- 1
- Pages
- 27-40
- ISSN
- 0969-7330 (ISSN-L)
- 1477-0989
- OpenAlex
- W2064863415
- Cited by
- 150
- References
- 45
- Citations by year
- 2026: 3 · 2025: 4 · 2024: 7 · 2023: 10 · 2022: 9 · 2021: 13 · 2020: 10 · 2019: 6 · 2018: 12 · 2017: 10 · 2016: 11 · 2015: 11 · 2014: 9 · 2013: 10 · 2012: 7
- FWCI
- 2.67
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Nursing Ethics (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- Alzheimer Society
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
- Keywords
- informed consent, research participation, dementia, assent, dissent, vulnerable populations, research ethics, research recruitment, data collection, authorized representatives, minimal risk research
- MeSH terms
- Aged, Canada, Dementia, Family, Female, Humans, Human Experimentation, Informed Consent, Nursing Assessment, Patient Advocacy, Research Personnel, Geriatric Assessment, Mental Competency, Guidelines as Topic, Risk Assessment, Patient Selection, Third-Party Consent, Principle-Based Ethics, Comprehension, Ethics, Research, Vulnerable Populations
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