We conduct a series of studies aimed at understanding how caregivers and patients make decisions about dementia care, and research participation. The information gained in this work helps us in developing educational and support programs.Interview studies are generally conducted in a single session of less than an hour's time. They may be conducted at the participant's home or workplace, if that is most convenient.
Studies now open for participation
At which stage of Alzheimer's Disease does a person retain the ability to appoint a research proxy?“Capacity to Appoint a Proxy for Research Consent” aims to characterize the relationship between the capacity to give informed consent for research, and the capacity to appoint a proxy decision-maker for research consent. Using a well-validated measure of capacity for informed consent to research (the MacArthur Competence Assessment Tool Clinical Research Version) and a novel instrument for assessing abilities relevant to appointing a research proxy (Capacity to Appoint a Proxy Assessment), this study will determine whether a significant proportion of persons with Alzheimer's disease who are incapable of independent consent to research still retain the capacity to appoint a proxy for research decision-making.
- For more information about this study please contact Paige Brookstein by email at paige.brookstein@uphs.upenn.edu or by phone at 215-662-2872.
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