title: 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.
authors.affiliation: University of Calgary, Primary Care Research and Development Group, Department of Family Medicine, 1635, 1632 - 14 Ave, NW, Calgary, AB, T2N 1M7, Canada. sslaught@ucalgary.ca
authors.forename: Susan
authors.initials: S
authors.lastname: Slaughter
authors.forename: Dixie
authors.initials: D
authors.lastname: Cole
authors.forename: Eileen
authors.initials: E
authors.lastname: Jennings
authors.forename: Marlene A
authors.initials: MA
authors.lastname: Reimer
mesh_terms: D000368:Aged; D002170:Canada; D032882:Comprehension; D003704:Dementia / Q000175:diagnosis / Q000523:psychology; D032984:Ethics, Research; D005190:Family / Q000523:psychology; D005260:Female; D015577:Geriatric Assessment; D017408:Guidelines as Topic; D006805:Human Experimentation / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000523:psychology; D016743:Mental Competency / Q000523:psychology; D009730:Nursing Assessment / Q000941:ethics; D010344:Patient Advocacy / Q000941:ethics; D018579:Patient Selection / Q000941:ethics; D028662:Principle-Based Ethics; D012108:Research Personnel / Q000941:ethics; D018570:Risk Assessment / Q000941:ethics; D020458:Third-Party Consent / Q000941:ethics; D035862:Vulnerable Populations / Q000523:psychology