The DOI matches its Crossref record; 45 of the 45 references it cites were found in a registry or an index.
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.
Overview
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
In the citing paper
“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]
Citations
Cites
Principles of Biomedical Ethics
(2012) · Thieves of Virtue · doi:10.7551/mitpress/9079.003.0009 · Cited by 13,453
The Global Deterioration Scale for assessment of primary degenerative dementia
Reisberg, ., Ferris, S. H., de Leon, M. J., & Crook, T. H. (1982) · American Journal of Psychiatry · doi:10.1176/ajp.139.9.1136 · Cited by 5,122
A history and theory of informed consent
Kapp, M. B. (1986) · Journal of Legal Medicine · doi:10.1080/01947648609513478 · Cited by 2,328
Gandevia, B., & Tovell, A. (1964) · PubMed · Cited by 2,069
Deciding for others: the ethics of surrogate decision making
(1990) · Choice Reviews Online · doi:10.5860/choice.28-0985 · Cited by 1,134
Informed Consent and the Capacity for Voluntarism
Roberts, L. W. (2002) · American Journal of Psychiatry · doi:10.1176/appi.ajp.159.5.705 · Cited by 268
Kim, S. Y. H., Caine, E. D., Currier, G. W., Leibovici, A., & Ryan, J. M. (2001) · American Journal of Psychiatry · doi:10.1176/appi.ajp.158.5.712 · Cited by 255
Dewing, J. (2002) · Dementia · doi:10.1177/147130120200100204 · Cited by 251
Defining and Describing Benefit Appropriately in Clinical Trials
King, N. M. P. (2000) · The Journal of Law Medicine & Ethics · doi:10.1111/j.1748-720x.2000.tb00685.x · Cited by 226
Weijer, C. (2000) · The Journal of Law Medicine & Ethics · doi:10.1111/j.1748-720x.2000.tb00686.x · Cited by 190
Research works printed but not linked: 15
- Canadian Study of Health and Aging Working Group, 1994, CMAJ, 150, 899
- Statistics Canada, 2000, Projections of population and families for Canada, the provinces and territories
- Gwyther LP, 1997, Alzheimer Dis Assoc Disord, 11, 18
- Alzheimer Society of Canada, 2004, Alzheimer care ethical guidelines: participation in research
- Lawton MP, 1997, Alzheimer Dis Assoc Disord, 11, 91
- Dresser R., 2001, Georgia Law Rev, 35, 661
- 2003, Tri-council policy statement: ethical conduct for research involving humans
- National Advisory Council on Aging, 2004, The NACA position on Alzheimer disease and related dementias
- Malloy DW, 1998, Capacity to decide
- Ki SYH, 2002, Am J Psychiatry, 158, 712
- 2003, Dependent Adults Act
- 2003, Personal Directives Act
- Weisstub DN, 1998, Health Law Can, 18, 95
- Dresser R., 1994, Rutgers Law Rev, 46, 609
- Hunter K, 2003, J Wound Ostomy Continence Nurs, 30, 241
Cited by
Sorted by citations
Items 101–150 of 150
Barsan, K., Swindle, J., Boscart, V., Chacinski, D., Hoben, M., Hopper, T. L., McGilton, K. S., & O’Rourke, H. M. (2024) · Journal of Advanced Nursing · doi:10.1111/jan.16112 · Cited by 5
Ongoing Consent in Situations of Cognitive Vulnerability
Sankary, L. R., & Ford, P. J. (2019) · doi:10.1093/oso/9780198824343.003.0001 · Cited by 4
Hernández‐Marrero, P., Pereira, S. M., Araújo, J., & Carvalho, A. S. (2018) · Emerald Group Publishing Limited eBooks · doi:10.1108/s2398-601820180000004010 · Cited by 4
A methodological approach to accessing informal dementia care
Fletcher, J. R. (2019) · Working with Older People · doi:10.1108/wwop-09-2019-0022 · Cited by 4
Patient participation in everyday life in special care units for persons with dementia
Helgesen, A. K. (2013) · BIBSYS Brage (BIBSYS (Norway)) · Cited by 4
Vlckova, K. H., Gonella, S., Bavelaar, L., Mitchell, G., & Sussman, T. (2023) · International Journal of Nursing Practice · doi:10.1111/ijn.13224 · Cited by 3
Real-time location system implementation in dementia care: Stakeholder perspectives
Grigorovich, A., Harvey, K., Levy, A., Haslam‐Larmer, L., Shum, L. C., Iaboni, A., & McMurray, J. (2025) · The Gerontologist · doi:10.1093/geront/gnaf244 · Cited by 3
Díaz, B. C., & Solís-Albanese, E. (2023) · Salud Ciencia y Tecnología · doi:10.56294/saludcyt2023219 · Cited by 3
Waiting for home: The experience of delayed discharge for people with dementia
Sakamoto, M., Phinney, A., & Thompson, G. N. (2022) · International Journal of Older People Nursing · doi:10.1111/opn.12516 · Cited by 4
The Effects of Question Type on Conversational Discourse in Alzheimer's Disease
Petryk, M., & Hopper, T. L. (2009) · Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders · doi:10.1044/nnsld19.4.126 · Cited by 3
What is the meaning of family-centred Admiral Nursing for carers?
Hibberd, P. (2011) · Northumbria Research Link (Northumbria University) · Cited by 3
Berner, N., Hohmann, A., Yilmaz, B., & Teupen, S. (2024) · International Journal of Qualitative Methods · doi:10.1177/16094069241232346 · Cited by 2
Salai, A.-M., Cook, G. A., & Holmquist, L. E. (2023) · Lecture notes in computer science · doi:10.1007/978-3-031-42280-5_11 · Cited by 2
Reducing patient distress: a model for dementia care
Hackman, E., Tomlinson, L., Mehrez, A., & Mackereth, P. (2013) · British Journal of Nursing · doi:10.12968/bjon.2013.22.sup2.s13 · Cited by 2
Considerations in Evaluating Technologies in Memory Care Units
Lazar, A., Thompson, H. J., & Demiris, G. (2015) · Lecture notes in computer science · doi:10.1007/978-3-319-20913-5_11 · Cited by 2
Research in Adults with Diminished Capacity
Dickert, N. W., & Largent, E. A. (2021) · Oxford University Press eBooks · doi:10.1093/oxfordhb/9780190947750.013.38 · Cited by 2
Kosch, T., Grote, T., Schmidt, A., & Woźniak, P. W. (2022) · Nordic Conference on Human-Computer Interaction · doi:10.1145/3546155.3546662 · Cited by 2
Dovetails: personhood, citizenship, and craft between children and older adults
Collingham, H., Wallace, J., Brewster, J., Whittingham, R., Prost, S., Marshall, J., Kindleysides, M., & Benson, W. (2024) · Design for Health · doi:10.1080/24735132.2024.2333661 · Cited by 2
Forskning med patienter uden handleevne: Lovgivning og etiske overvejelser
Guldager, R., Larsen, K. B., & Poulsen, I. (2017) · Klinisk Sygepleje · doi:10.18261/issn1903-2285-2017-02-07 · Cited by 2
Constant Observation for Older Adults in Acute Care: A Mixed Methods Study
Moghabghab, R. (2017) · TSpace (University of Toronto) · Cited by 2
A SUITCASE OF MEMORIES: A SENSORY ETHNOGRAPHY OF TOURISM AND DEMENTIA WITH OLDER PEOPLE
Mullins, J. M. (2018) · ORCA Online Research @Cardiff (Cardiff University) · doi:10.13140/rg.2.2.35036.95366 · Cited by 2
Ethical Issues in Dementia—Global Challenges
Sousa, A. D., & D’Souza, R. F. (2021) · Springer eBooks · doi:10.1007/978-981-16-3864-0_16 · Cited by 1
Researching the social aspects of dementia from a social work perspective
Mali, J., & Štambuk, A. (2024) · Advances in Methodology and Statistics · doi:10.51936/aczv5975 · Cited by 1
Exploring the Relationship between Risk Assessment Tools and Sub-Epidermal Moisture Measurement
Molloy, S. (2015) · doi:10.25419/rcsi.10820141 · Cited by 1
Adams, A., Lole, L., Oorloff, A., & Duffy, C. (2023) · International Journal of Older People Nursing · doi:10.1111/opn.12535 · Cited by 1
Malvern, R. (2018) · Summit (Simon Fraser University) · Cited by 1
Howell, B. M., & Shogren, K. A. (2019) · doi:10.1093/oso/9780198824343.003.0003 · Cited by 1
Consent, Assent and Dissent in Dementia Care and Research
O’Neill, D. J. (2012) · Elsevier eBooks · doi:10.1016/b978-0-12-416049-1.00008-8 · Cited by 1
Exploring person-centered care and mealtimes for residents with dementia in specialized care units
Wu, S. (2015) · Summit (Simon Fraser University) · Cited by 1
Anton, B. (2009) · Cambridge Quarterly of Healthcare Ethics · doi:10.1017/s0963180109090252 · Cited by 1
de Boer (2017) · doi:10.26481/dis.20171019bdb · Cited by 1
Ethical Aspects of Dementia Care
Landau, R. (2012) · Oxford University Press eBooks · doi:10.1093/obo/9780195389678-0181 · Cited by 1
Dementia and guardianship: challenges in social work practice in a health care setting
Mills, M. H. (2015) · The Sydney eScholarship Repository (The University of Sydney)
Etisk utfordrende å forske på demens
Hauvik, S. (2012) · Sykepleien Forskning · doi:10.4220/sykepleiens.2012.0150
Otępienie a zgoda na udział w medycznych badaniach naukowych — wybrane zagadnienie etyczne
Zurzycka, P. Z., & Radzik, T. (2015) · Problemy Pielęgniarstwa · doi:10.5603/pp.2015.0046
Understanding the impact of pre-existing dementia on stroke rehabilitation
Longley, V. (2018) · Research Explorer (The University of Manchester)
Serota, A. (2020) · UWSpace (University of Waterloo)
Supporting older people living in care homes: A qualitative network approach
Ferguson, J. M. (2020) · Stirling Online Research Repository (University of Stirling)
BUTLER, C. (2022) · Cronfa (Swansea University) · doi:10.23889/suthesis.62146
Cardiac Interventions in the Absence of Assent: An Ethical Dilemma
Kersey, C. B., Ashinne, B., Keenan, J. E., & Kirkpatrick, J. N. (2023) · The American Journal of Cardiology · doi:10.1016/j.amjcard.2023.07.019
Learning about the effectiveness of chaplaincy care for residents with more severe dementia
van der Geugten, W., Goossensen, A., Roding-Schilt, A., de Groot, J., Körver, J., & Jacobs, G. (2025) · Practical Theology · doi:10.1080/1756073x.2025.2559217
Arias, J. J., Wright, M. S., & Tyler, A. M. (2025) · Cambridge University Press eBooks · doi:10.1017/9781108985055.027
Götzelmann, T., Strech, D., & Kahrass, H. (2021) · Figshare · doi:10.6084/m9.figshare.14329588
Götzelmann, T., Strech, D., & Kahrass, H. (2021) · Figshare · doi:10.6084/m9.figshare.14329594
Götzelmann, T., Strech, D., & Kahrass, H. (2021) · Figshare · doi:10.6084/m9.figshare.14329591
Joanisse, C., Harrisson, S., & O’Sullivan, T. L. (2026) · Recherche en soins infirmiers · doi:10.3917/rsi.164.0101
Kontos, P., Bar, R. J., Grigorovich, A., Sethi, B., Changfoot, N., Skinner, M. W., Herron, R., Aleong, R., Norris, M., Colobong, R., et al. (2026) · BMJ Open · doi:10.1136/bmjopen-2025-112152
Påverkar taktil beröring välbefinnandet hos personer med demens
Hänninen, N., & Torstensson, N. (2011) · Borås Academic Digital Archive (University of Borås)
Metadata
- 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
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review