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.
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.
- Recruitment is now complete, and we are currently analyzing results.
How will Parkinsons disease researchers ethically enroll cognitively impaired patients with Parkinsons disease into research?
“Research Consent Capacity in Persons with Parkinsons disease” aims to show clinicians, investigators, patients and families how the cognitive and personality problems seen in persons with Parkinsons disease affect patients’ ability to make ethically challenging decisions and the decisions that they make. Parkinsons patients typically experience problems with their movement, but they also have problems with cognition. Using a well-validated measure of capacity for informed consent to research (the MacArthur Competence Assessment Tool Clinical Research Version), this study will determine the impact of cognitive and neuropsychiatric impairments on a patient’s ability to make a research enrollment decision. This project is enrolling normal controls as well as Parkinsons patients.
- For more information about this study, please contact Study Coordinator Liz Sullo by email at liz.sullo@uphs.upenn.edu or by phone at 215-573-9736.
“Quality of Life and Aging” aims to show how awareness of one’s symptoms and distress of one’s symptoms relates to quality of life. This study will enroll patients with mild to moderate Alzheimer’s disease, mild cognitive impairment, and older adults with normal cognition. The goal of the study is to understand the relationship between performance on an objective metacognitive assessment, clinician ratings of subjects’ awareness of deficit, and subject and informant ratings regarding the patients’ cognitive and functional abilities. Because two patients with comparable memory loss may demonstrate exceedingly different levels of awareness regarding such impairment, it is necessary to assess the impact awareness has on quality of life, and to validate a new measure of objective metacognition. Results of this study may improve measurement and conceptualization of disordered awareness in AD, determine what level of disordered awareness indicates clinically significant impairment in metacognition, and determine whether disordered awareness is associated with how patients rate their quality of life.
- For more information about this study, please contact Study Coordinator Liz Sullo by email at liz.sullo@uphs.upenn.edu or by phone at 215-573-9736.
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