Preservation of the Capacity to Appoint a Proxy Decision Maker

Implications for Dementia Research

When considering two research trials, Alzheimers patients were less able to provide consent for their own participation than they were capable of appointing a proxy to provide consent for them.

This original article examines two aspects of Alzheimers patients’ decision-making capabilities: 1) ability to consent to their own participation in research trials (e.g., understanding of research and activities required); and 2) ability to appoint a research proxy to provide surrogate consent. The Alzheimers patients who participated had a range of decision-making capacities. The patients considered two hypothetical research scenarios, a high-risk neurosurgical trial and a low-risk drug trial. After observing each participant on video, expert judges assessed decision-making capacity.

Key Findings:

  • Of a group tested for both their capacity to consent to the low-risk trial and capacity to appoint a proxy, only 41 percent were able to provide their own consent, while 62 percent were deemed capable of appointing a proxy.
  • Of the participants judged incapable of consenting to the high-risk trial, more than half retained the ability to appoint a proxy.

This original article compares the capacity of Alzheimers patients to provide their own consent to participate in research to their capacity to appoint a research proxy.

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