Informed consent for research involving people with dementia: a grey area.
Research involving people with dementia has been flagged as a key priority by Alzheimer's International. Dementia has been an Australian National Health Priority since 2005, yet there are no clear guidelines for seeking and obtaining informed consent from people with dementia to participate in observational research. Informed consent is an ethical requirement for the conduct of research involving humans. Although many people with dementia are able to express a desire to be involved in research, the insidious progression of the disease reduces a person's ability to understand and appreciate the consequences of involvement. This paper explores the author's journey of seeking and obtaining informed consent for a mixed methods study which involved the observation of older people with dementia.
Cubit
Katrina
K
School of Nursing & Midwifery, University of Tasmania, Launceston, TAS, Australia.
D000374:Aggression / Q000523:psychology; D001315:Australia; D003704:Dementia / Q000523:psychology; D028744:Ethics Committees, Research; D017408:Guidelines as Topic; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000331:legislation & jurisprudence / Q000523:psychology; D016743:Mental Competency / Q000331:legislation & jurisprudence / Q000523:psychology; D033281:Nontherapeutic Human Experimentation / Q000941:ethics / Q000331:legislation & jurisprudence; D009735:Nursing Homes; D015399:Nursing Research / Q000941:ethics / Q000458:organization & administration; D018579:Patient Selection / Q000941:ethics; D012107:Research Design; D035842:Research Subjects / Q000331:legislation & jurisprudence / Q000523:psychology; D013648:Tasmania