New Program Provides Comprehensive Care for Memory Disorder Patients and Families

The University of Rochester Medical Center has opened the doors on a unique and innovative program that provides comprehensive evaluation, care, and support for people and families coping with Alzheimer’s disease and other causes of progressive memory loss.   The new Memory Care Program is located at Clinton Crossings and is staffed by a multi-disciplinary team of clinicians, including specialists in neurology, psychiatry, geriatrics, neuropsychology, social work, nurse practice, and marriage and family therapy.

“Memory disorders are complex problems that have a profound impact on the quality of life of both patients and their families,” said URMC neurologist Fred Marshall, M.D., director of the new Memory Care Program. “Effective treatment requires a coordinated approach involving access to a team of clinicians that can help address the many facets of these diseases.”

“This clinic will serve as a foundation for efforts to improve and expand the care we provide to patients and their families,” said URMC psychiatrist and the William and Sheila Konar Endowed Professor Anton P. Porsteinsson, M.D. “It brings together all of the necessary clinical resources and services under one roof and creates a platform for growth to meet the growing demand for care for individuals with memory disorders.” 

The new program meets a vital unmet community need, and will be collaborating extensively with local organizations such as the Alzheimer Association to provide “wrap-around” support services for caregivers, patients, and families in Rochester and surrounding communities. Until now, there has not existed a comprehensive and integrated approach to diagnosing and providing long-term treatment and support for patients and their families that evolves as the disease progresses.

“In terms of resources it is important to understand the scope of the disease,” said David Midland, president of the Rochester and Finger Lakes Alzheimer’s Association. “It starts off very modestly with people realizing they have memory issues and then it progresses over a period of time to where it becomes a debilitating disease. So the type of care that is required depends upon the stage of the disease and as people progress, the amount of care, the intensity of care, become significant.”

The demand for these services is large and growing. As many as 25,000 people in the Finger Lakes region are estimated to suffer from Alzheimer’s – which is the most common form of dementia – and the incidence of the disease is on the rise with the number expected to triple by 2050 as the population ages. But even these figures do not convey the scope of the disease’s impact. For every one person with the disease, it is estimated that an additional three people – often family members – provide that person with support and care. 

“We have an aging population and this is an epidemic,” said Marshall. “This is going to require that we develop better ways of providing care.”

The new program will conduct comprehensive evaluations of each new patient, provide guidance on medications and coping strategies, and educate patients and families about a broad variety of resources and support available in the community. The program will be able to follow up to 3,000 patients and intends to recruit new faculty and expand capacity as demand grows.

One of the barriers to creating a comprehensive memory disorders program is that the cost of care often exceeds what can be recouped from payers. While health insurance does cover some aspects of care, many of the important time-intensive evaluations and follow-up care services are not reimbursed.   A $1 million anonymous gift to the Medical Center was critical to making the new program a reality and will help cover the true cost of these comprehensive services for a few years. This gift is part of the University of Rochester Medical Center’s $650 million campaign and the overall $1.2 billion goal of The Meliora Challenge: The Campaign for the University of Rochester.

The program represents one facet of a broad approach to bring together memory disorder care, research, and education programs in Rochester. While there is no cure for Alzheimer’s and the many related causes of dementia, promising new therapies and new ways to diagnose and track the disease are under development with URMC researchers at the forefront of these efforts.  

URMC is the hub of an international network of researchers who are searching for new treatments of the disease and have been involved in the design and operation of just about every major clinical study for Alzheimer’s. URMC is leading an effort to identify a biomarker that may allow early detection of the disease and point the way to new treatment options. The Medical Center is also home to the Alzheimer’s Disease Care, Research, and Education Program, a research program led by Porsteinsson and located at Monroe Community Hospital that focuses on clinical trials for patients with Alzheimer’s disease. 

The Medical Center is committed to creating the next generation of specialists who will provide care to the growing number of patients who suffer from dementia and the program will serve as a training ground for students, residents, and fellows.

In addition to Marshall and Porsteinsson, the other members of the clinical team include neurologist Charles Duffy, M.D., behavioral neurology fellow, Michael Giglio, M.D., geriatric psychiatrist Lisa Boyle, M.D., geriatrician Michelle Carpenter-Bradley, M.D., neuropsychologist Mark Mapstone, Ph.D., nurse practitioners Michael Hasselberg M.S., N.P.P. and Catherine V. Oliver, F.N.P.-C., marriage and family therapist Carol Ann Podgorski, M.S., Ph.D., social worker Susan Ruhlin, L.M.S.W., and an extensive support staff.

For more information, visit: www.memorycare.urmc.edu. The Memory Care Program is located at 919 Westfall Road in Rochester in building C, suite 220 and can be reached by calling 585-273-5454.