NYU Langone Medical Center has been awarded a five-year $7.5 million grant to provide caregivers for individuals with Alzheimer’s disease and other dementias with access to state-of-the-art support programs and services designed to improve quality of life.
New York State Governor Andrew M. Cuomo announced earlier this month that $67.6 million has been awarded to nine organizations across the state as part of his Alzheimer's Caregiver Support Initiative to develop programs that support family members and caregivers for New Yorkers living with Alzheimer’s and dementia.
NYU Langone will receive $1.5 million per year through the five-year life of this award, beginning in January 2016, to launch the Alzheimer’s Disease and Related Dementias Family Support Program aimed at providing counseling and support to New York City caregivers.
About 380,000 New Yorkers have Alzheimer’s disease, a number expected to climb to 460,000 by 2025. More than half of those affected live at home, among whom 75 percent live with a friend or family member who provides care. In addition, there are an estimated 1 million informal caregivers in New York State who provide 1.1 billion hours of unpaid care. Caregivers of those with Alzheimer’s have higher rates of emotional stress and depression and physical health problems, according to the Alzheimer’s Association.
“This grant provides a unique opportunity to enact a model for the best possible care and support services available for those caring for people with Alzheimer’s, who themselves face an incredible burden to their mental and physical health as they provide care to those affected with devastating dementias,” says Mary Mittelman, DPH, principal investigator of the Alzheimer’s Disease and Related Dementias Family Support Program and a research professor of psychiatry and rehabilitation medicine at NYU Langone. “There is no drug yet available that can prevent or cure dementia, but psychosocial interventions have been proved to have a significant positive impact on persons with dementia and their caregivers. Now, Governor Cuomo and New York State have made it possible for us to create a model program of counseling, support, and services that will be accessible to thousands of caregivers.”
The Alzheimer’s Disease and Related Dementias Family Support Program will offer a menu of evidence-based interventions and programs that can be personalized to a caregiver’s specific health or social support needs. Each caregiver who signs up for the program will receive support, tailored to his or her needs, based on a comprehensive assessment. A team of care coordinators and social workers, in consultation with medical and social service experts, will offer or link caregivers to services including care planning and triage, caregiver education and counseling, care consultation and family counseling, connection to community-based support groups and respite services, and referrals to necessary medical and other support services.
These services will be delivered both in-person and through the creation of a new online network that will link caregivers and families to services via real-time evidence-based interventions delivered by video teleconferencing and at-home tools designed to improve quality of life and a sense of social support while reducing caregiver burden and depression.
Also as part of the grant, a new chorus for people with dementia and their caregivers will launch in New York City. This will be modeled after The Unforgettables chorus, a program Dr. Mittelman launched in 2011 that has received widespread media attention since its inception for its psychosocial benefits to participants and their family members and the joy it brings to the audience at its concerts.
The core services offered by the Alzheimer’s Disease and Related Dementias Family Support Program are embodied in the NYU Caregiver Intervention (NYUCI), developed and evaluated by Dr. Mittelman in a randomized controlled trial funded by the National Institutes of Health from 1987 to 2010 that found numerous long-term benefits for both caregivers and patients. Research published from the project found the NYUCI can help keep people with dementia at home and out of long-term care facilities 1.5 years longer than usual care, based on improved support for the caregiver. An additional study modeling the effects of implementing the NYUCI in Minnesota found that the intervention could save $996 million for 15 years if every resident caregiver utilized the intervention. Training for social service providers in how to deliver the NYUCI is available online. A video teleconferencing version of the NYUCI is currently being evaluated through a nationwide randomized controlled trial.
The Alzheimer’s Disease and Related Dementias Family Support Program will be directed by a multidisciplinary team of experts, led by Dr. Mittelman, whose NYU Caregiver Intervention has been implemented in numerous U.S. states and studied in Israel, the United Kingdom, and Australia. The team also includes Thomas Wisniewski, MD, a researcher and clinician who studies Alzheimer’s and neurodegenerative disease pathology and serves as director of the Center for Cognitive Neurology at NYU Langone, and Joshua Chodosh, MD, a health services researcher and clinical geriatrician. As director of the Freedman Research Program on Aging and Cognition at NYU Langone, Dr. Chodosh implements and studies programs for older adults with cognitive impairment.
The directors will work with an advisory council composed of all participating partner agencies, consultants, former or current family caregivers of people with dementia, and people in the early stage of dementia.