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Network’s ‘it takes a village’ approach improves dementia care and informs research, study shows

The approach of the Indianapolis Discovery Network for Dementia — with contributions from family members, community advocates, health care systems and researchers — improves dementia care and informs dementia research, according to a new study by researchers from the Regenstrief Institute and the Indiana University Center for Aging Research.

“Collaborative dementia care — sensitive to local needs and concerns — combines human interaction of all those involved plus technology. Regular face-to-face meetings of caregivers, clinicians and researchers provide invaluable opportunities to balance human need and the flood of information as we develop and deliver new and innovative dementia care,” said Regenstrief Institute investigator Malaz Boustani, M.D., MPH, associate director of the IU Center for Aging Research and IU School of Medicine associate professor of medicine. The senior author of the new study in the Journal of Clinical Interventions in Aging, a peer-reviewed, open-access online publication, Dr. Boustani is founding director of the Indianapolis Discovery Network for Dementia and sees patients at the Wishard Healthy Aging Brain Center.

IDND’s interdisciplinary open-source think-tank implementation of innovations short circuits the lengthy — typically 17-years, according to Dr. Boustani — research-to-practice timeline, bringing concepts that improve dementia care to patients in a fraction of that time. This “discovery-to-delivery” approach evolves to meet the changing needs of those it serves.

For example, IDND’s Anticholinergic Cognitive Burden Scale, which evaluates the effects of common over-the-counter and prescription drugs on the aging brain, was developed, tested and put into clinical practice within four years. The Healthy Aging Brain Care Monitor, a “blood pressure cuff” for dementia put into patient care within two years of development, functions as a screening, diagnostic and management tool. Both tools are now in worldwide use.

IDND works to halt inappropriate or “bad” medicine; counsel and support families; reduce the cost of care by avoiding unnecessary emergency room visits and hospitalizations; and decreasing the likelihood of long-term care.

“Discovering and testing effective solutions for people with dementia is not enough,” Dr. Boustani said. “IDND creates a platform that can be adapted to any locality to disseminate, implement and translate discoveries into practice that will work there — whether a metropolitan area with large, competing health systems like Indianapolis or a totally different environment. Solutions must be localized to be effective, and they can be. Highly competitive organizations like banks collaborate every day to make financial transactions seamless; diverse health care systems surely can find ways to collaborate to improve lives.”

A geriatrician, Dr. Boustani focuses on rapid translation of aging brain research discovery into health care delivery using the lens of complexity science, the tools of medical informatics and the methods of public health epidemiology.

IDND resources are available without charge on the network’s website.

“As a geriatrician in community practice, the majority of my patients have dementia. Our close linkage with the researchers at the University through IDND has allowed me to utilize newly developed clinically useful tools early in their development and to provide feedback on their applicability to my patient population,” said Patrick Healey, M.D., St. Vincent Health Network.

“The IDND offers a model of collaboration that communities across the country can use to rapidly improve the quality of life for people with dementia and their families. More generally, this is a framework that foundations, government agencies, and health care organizations can support to ensure the relevance and real-world application of scientific research,” said Marcus R. Escobedo, MPA, John A. Hartford Foundation program officer. The foundation is America’s leading philanthropy with a sustained interest in aging and health.

In addition to Dr. Boustani, “Connecting research discovery with care delivery in dementia: the development of the Indianapolis Discovery Network for Dementia” is authored by Amie Frame, MPH, and Stephanie Munger, MPH of the Regenstrief Institute and IU Center for Aging Research; Patrick Healey, M.D., of St. Vincent Health Network; Jessie Westlund, R.N., and Azita Chehresa, M.D., Ph.D., of Community Health Network; Martin Farlow, M.D., of the IU School of Medicine; Ann Marie Hake, M.D., of Eli Lilly and Co.; Mary Guerriero Austrom, Ph.D., of the IU School of Medicine; Polly Shepard, Psy.D., and Corby Bubp, Ph.D., of The Memory Clinic of Indianapolis; Jose Azar, M.D., and Arif Nazir, M.D., of the IU School of Medicine; Nadia Adams, MHA, of Indiana University Health; Noll Campbell, Pharm.D., of Purdue University College of Pharmacy and Wishard Health Services; and Paul Dexter, M.D., of the Regenstrief Institute and IU School of Medicine.

The work was supported by a Paul Beeson Career Development Award in Aging (K23 AG 26770-01) from the National Institute on Aging, The John A. Hartford Foundation, the Atlantic Philanthropies and the American Federation of Aging Research; two individual grants from the National Institute on Aging (P30 AG-10133) (P30 AG-024967); and a grant from the Agency for Healthcare Research and Quality (R01 HS019818-0).