Texas Aging and Longevity Center

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:
                    1. Did the research candidate make a choice?
                    2. Did the research candidate show understanding?
                    3. Did the research candidate show reasoning?
                    4. 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. 

1. Centers for Disease Control and Prevention. (2018). Alzheimer’s disease. Retrieved from: https://www.cdc.gov/aging/aginginfo/alzheimers.htm  
2. Centers for Disease Control and Prevention. (2018). Alzheimer’s disease: Promoting health and independence for an aging population at a glance. Retrieved from: https://www.cdc.gov/chronicdisease/resources/publications/aag/alzheimers.htm