WASHINGTON — Citing the mounting cost and increasing burdens on families caring for a loved one with Alzheimer’s, U.S. Senator Chris Murphy (D-Conn.) joined U.S. Senators Shelley Moore Capito (R-W.Va.), Debbie Stabenow (D-Mich.), and a bipartisan group of 10 other senators in urging the Centers for Medicare and Medicaid Services (CMS) to implement a program to support family caregivers of those with Alzheimer’s disease. 

“Today, more than 15 million Americans are serving as a family caregiver to a loved one living with Alzheimer’s or dementia, providing nearly 18 billion hours of unpaid care annually. These loving but largely untrained and unsupported family caregivers face many challenges,” the Senators wrote in the letter. “Mounting evidence suggests that targeted support services directed to these informal family caregivers may help the caregiver prevent or mitigate these challenges and help keep an Alzheimer’s patient in the home setting for longer periods of time.”

“We ask CMS to work to implement a demonstration program to more fully evaluate the impacts providing Alzheimer’s disease support services to caregivers would have on Medicare beneficiaries diagnosed with Alzheimer’s and related dementias, particularly on delaying or reducing their use of institutional long-term care and other health care services.”

Murphy, a member of the U.S. Senate Appropriations Committee and the U.S. Senate Health, Education, Labor, and Pensions Committee, is working to support family caregivers through the RAISE Family Caregivers Act. Murphy has hosted various roundtables around Connecticut with family caregivers, advocates, providers, and consumers of home and community-based elderly care to learn about issues impacting Connecticut caregivers, and how he can help them. Murphy is also a cosponsor of the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act to provide Alzheimer’s patients and their families with much-needed information about the disease and possible treatment options. 

The letter was also signed by: Senators Kelly Ayotte (R-N.H.), Sherrod Brown (D-Ohio), Bill Cassidy (R-La.), Susan Collins (R-Maine), Kirsten Gillibrand (D-N.Y.), Mark Kirk (R-Ill.), Amy Klobuchar (D-Minn.), Thom Tillis (R-N.C.), Jeanne Shaheen (D-N.H.) and Roger Wicker (R-Miss.).

The full text of the letter is below: 

Mr. Andrew Slavitt
Acting Administrator
Centers for Medicare and Medicaid Services
United States Department of Health and Human Services
200 Independent Avenue SW
Washington, DC 20201

Dear Acting Director Slavitt:

Due to mounting cost and health burdens related to Alzheimer’s disease and related dementias on federal health programs, we are writing to urge the Centers for Medicare and Medicaid Services (CMS) to implement a program to support family caregivers of those with Alzheimer’s. We were encouraged by Secretary Burwell’s remarks at the recent Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee Hearing on the FY17 Budget Request for the Health & Human Services Department on this topic. We agree with the Secretary that we could do more and do better for this essential population. In order to do so, we specifically ask that CMS implement a demonstration program to evaluate the cost-saving opportunities associated with providing targeted Alzheimer’s disease support services to caregivers.

Today, more than 15 million Americans are serving as a family caregiver to a loved one living with Alzheimer’s or dementia, providing nearly 18 billion hours of unpaid care annually. These loving but largely untrained and unsupported family caregivers face many challenges, including high levels of caregiver stress and depression; declines in physical, mental and emotional health; and financial shortfalls driven by both the costs associated with such care as well as the lost wages that are commonplace for caregivers of this population. Unfortunately, these immense challenges often lead to an Alzheimer’s patient’s premature entry into costly long-term care. Yet, mounting evidence suggests that targeted support services directed to these informal family caregivers may help the caregiver prevent or mitigate these challenges and help keep an Alzheimer’s patient in the home setting for longer periods of time.

One caregiver support model that has been shown to drive down costs while improving caregiver and patient experiences is the New York University Caregiver Intervention (NYUCI). The NYUCI consists of individual and family counseling, participation in a caregiver support group, and ad-hoc counseling via telephone for caregivers and families to help them deal with the many challenges described above. After more than 25 years in the field, this program has been shown to delay long-term care admission by more than a year and-a-half and to improve caregiver health and well-being. Most recently, the program developers have validated the use of online training to rapidly and efficiently train counselors to provide the NYUCI. Results of a recent study involving more than 250 counselors demonstrated that their online training was as effective as in-person training, indicating further potential to rapidly and cost-effectively scale up such an intervention.

The NYUCI model has been replicated and produced similar results in other states and regions. One analysis of the potential cost savings impact of the NYUCI, published in Health Affairs in 2014, suggests that if rolled out broadly in the state of Minnesota the direct medical cost savings could be $996 million over a 15 year period, with a range of nearly $100 million to $2.64 billion depending on the rate of adoption of the intervention. The Department of Veterans Affairs has implemented a similar type of intervention known as the Resources for Enhancing Alzheimer’s Caregiver Health or REACH program, which has also improved quality of life for caregivers.

Given this promising body of evidence, we ask CMS to work to implement a demonstration program to more fully evaluate the impacts providing Alzheimer’s disease support services to caregivers would have on Medicare beneficiaries diagnosed with Alzheimer’s and related dementias, particularly on delaying or reducing their use of institutional long-term care and other health care services. We thank you in advance for giving this your full and prompt attention and would like to request a meeting with you and other members of your team over the coming weeks to discuss the path forward.

Sincerely,