Consenting Individuals With Dementia
For more complete information on consent and assent of individuals at the University of Texas at Austin, please see our IRB page.
- Cognitive impairments can hinder the ability of individuals with dementia to understand their rights and consent to participating in research. 1
- Often a caregiver will need to be involved in the research, depending upon the severity of the dementia.2
- Never assume consent and voluntary participation when only the caregiver says yes. The participant must consent if they are capable.
- Determine capacity of consent by considering the following:
- Did the research candidate make a choice?
- Did the research candidate show understanding?
- Did the research candidate show reasoning?
- Did the research candidate show an appreciation of the potential risks and benefits of the study
Consent Measures
- Several scales and measurements have been used to assess the capacity to consent individuals with dementia and screen individuals for dementia including the following: 2
- Mini-Mental State Exam
- MacArthur Competence Assessment Tool for Treatment
- Hopemont Capacity Assessment Interview
- Capacity to Consent to Treatment Instrument
- For more information, see the shortlist of capasity assessment tools outlined by Fields & Calvert (2015).
Assent
- While participants may be unable to provide informed consent, they may be able to assent, indicating affirmative agreement to participate either verbally or in writing.
- The interviewer can sign assent form if a verbal assent is provided.
- When using assent, the participant's legal authorized representative must provide signed consent on their behalf.