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LiveWell Dementia Specialists in Plantsville, CT has received $250,000 in funding for a 2-year project to engage people with dementia as research partners. The first of its kind, the Empowering Partnerships project aims to enhance research by developing a network of people with dementia, family care partners, and researchers to be involved in all aspects of clinical research.
Inspired by a key recommendation from the 2017 National Research Summit on Dementia, this project aims to meet the request to fund more research on how people living with dementia and their care partners can become partners in research. This is a key unmet need, considering that enrolling participants for clinical trials of prospective dementia treatments now takes as long or longer than the trial itself, turning 18-month trials into 3- to 4-year trials.
The project will train people with dementia on research concepts, study design, and methods. Other components of the project include:
• expansion and strengthening of a peer-to-peer network of people living with dementia, the Dementia Peer Coalition;
• creation and delivery of a training program on research concepts and ways to partner on study design and methods, including how to leverage strengths and retained abilities of people living with dementia;
• find and sharing research topics important to people living with dementia;
• building and distributing a toolkit for project replication
Bob Savage, a person living with dementia who cofounded the Dementia Peer Coalition said, “I need researchers to partner with me, evaluate what matters, and validate what is working.”
Geri Taylor, also living with dementia, adds “Speak with me, not for me.”
“As researchers, we think that because we read the scientific literature that we know what benefits are most important to people living with dementia. There may be other outcomes that we didn’t even consider that people living with dementia could tell us about. The same goes for care partners”, said Dr. Richard Fortinsky, Ph.D. Professor, UConn Center on Aging.
Stephani Shivers, chief operating officer, community services, LiveWell Dementia Specialists, noted “People with every other chronic disease and disability are being brought to the research table, yet people with dementia aren’t even considered. They are immediately marginalized, even though they can actively participate in research for years if we access their retained strengths and learn to compensate for their cognitive disabilities.”
Funding comes from the Patient-Centered Outcomes Research Institute (PCORI), Engagement Awards program. An independent, non-profit organization, PCORI was authorized by Congress in 2010 to fund comparative effectiveness research to give patients, caregivers, and clinicians access to evidence for health care decision making. Partners in the project include Yale University School of Medicine, University of Connecticut Center on Aging, the National Alzheimer’s & Dementia Patient & Caregiver-powered Research Network (PPRM) and the Alliance for Aging Research. Project management and leadership will be provided by HoodenPyleGil (Milford, CT), a systems research and innovation lab.
Thy Nguyen, MD; and Cecile L. Phan, MD
Kevin J. Felice, DO
Chengyuan Wu, MD, MSBmE