Improving Alzheimer’s Care in the U.S.
Alzheimer’s disease is a progressive neurodegenerative condition that often leads to a serious emotional, physical and financial burden on both people living with the disease and their primary caregivers, usually family members.
An estimated 5.7 million Americans are currently living with Alzheimer’s, which is now the sixth leading cause of death in the United States.1
Given the complexity of the disease, patients and their caregivers often require multidisciplinary care that may involve physicians, nurses and social workers as well as community-based service providers. Effectively coordinating this care, including referrals for social support, can improve patient and caregiver outcomes, enhance overall quality of life, and reduce disparities in care.2, 3
Investing in programs to support Alzheimer’s patients and caregivers
To help improve the health and well-being of people living with Alzheimer’s and their caregivers in vulnerable U.S. communities, our company’s Foundation committed $5 million through 2021 to support programs that strengthen care coordination and navigation. Program partners are implementing evidence-based programs to help:
- Increase access to needed care and provide support for people living with Alzheimer’s disease and their caregivers
- Foster collaboration across the health and social service sectors to address the medical and social needs of patients and their caregivers
- Improve patient and caregiver outcomes, including quality of life
Alzheimer’s Association, Massachusetts/New Hampshire chapter
In 2018, our company’s Foundation announced a $1.5 million, four-year (2018–2021) grant to the Alzheimer’s Association, Massachusetts/New Hampshire chapter to expand its Dementia Care Coordination program in Massachusetts and take it to Maine, New Hampshire and Rhode Island. The program increases access to care and support for people living with Alzheimer’s disease and their caregivers in underserved urban and rural areas.
As part of this evidence-informed model, a health care provider or payer refers the caregiver for a consultation with a memory specialist who develops an individualized care plan. The plan is designed to help manage the patient’s symptoms and behaviors, connect caregivers to needed resources in the community, and overcome barriers to care and support.
To provide ongoing support for patients and caregivers, the program also includes:
- New and more frequent forms of follow-up with patients and families, including telephone calls, emails, texts and chats that increase the likelihood of reaching caregivers
- Telephone support groups for patients and caregivers
- Interactive webinars that provide education for patients and caregivers
- Collaboration with clinical partners to provide appropriate training and support to allied health care professionals and relevant nonclinical staff
The Alzheimer’s Association’s health system and insurance partners, recognizing the potential financial savings of coordinating patient care, assume a portion, or all, of the cost associated with their participation in the program, helping to ensure sustainability.
HealthPartners Center for Memory and Aging, Minneapolis, Minnesota
Our Foundation is supporting efforts to strengthen care coordination for people with dementia and their caregivers in rural areas with limited access to specialty care. In 2018, the Foundation provided a $1.5 million, four-year (2018–2021) grant to support HealthPartners (HP) Center for Memory and Aging and its partner, the University of California, San Francisco (UCSF), to implement UCSF’s Care Ecosystem program in Minnesota.
The Care Ecosystem expands the ability of dementia specialists to address the unmet needs of patients and their caregivers by providing support, education, care coordination and linkages to community-based resources. As part of adopting this model, which has demonstrated strong results in California, UCSF will provide ongoing training to the HP clinical team and care team navigators.
The program includes:
- Deploying Care Team Navigators, who serve as the primary point of contact for patients and their caregivers as they navigate the challenges of living with dementia and develop personalized care plans
- Delivering tailored information and resources—appropriate for the stage of the disease—to patients and caregivers and providing follow-up phone support
- Establishing and testing new billing mechanisms to increase reimbursement for dementia care services, helping ensure sustainability
UCSF will evaluate HP’s adoption of the Care Ecosystem in three areas: (1) impact of the program on patient access to dementia care services; (2) projected value of the program in reducing emergency-related health care costs; and (3) potential for HP to receive reimbursement for the nonclinical care and services it provides to patients with dementia.
North Carolina A&T State University Center for Outreach in Alzheimer’s, Aging and Community Health, Greensboro, North Carolina
Our Foundation is supporting the North Carolina A&T State University Center for Outreach in Alzheimer’s, Aging and Community Health (COAACH) with a $2 million, four-year (2016–2019) grant to implement programs that better support Alzheimer’s patients and caregivers by broadening outreach among underserved populations and improving awareness of the disease in rural North Carolina.
To help improve access to community resources and empower vulnerable communities, the COAACH programs include:
- Caregiver College, which provides support, education and training for caregivers of family members living with Alzheimer’s disease to help improve awareness, care management and coping strategies
- Lay Health Ambassadors from local faith-based institutions, who help raise disease awareness and provide information about community resources to assist patients with Alzheimer’s and their families
- Family Navigation to help families of people living with Alzheimer’s overcome barriers to timely screening, diagnosis, treatment and supportive care
- In 2018, COAACH launched its Caregiver College and trained 20 lay health ambassadors from 10 faith-based institutions in a variety of topics related to Alzheimer’s and associated conditions to improve awareness of the disease in their communities.
- During 2018, the Center reached more than 5,000 community members through caregiver support group meetings and community events. The Center’s unique community outreach and engagement approach was featured at the 2018 Alzheimer’s Association International Conference.
- The Family Navigation program, which began in 2018, provides a Web-based hub where families, including long-distance caregivers, can find support and community resources to help them navigate the challenges of Alzheimer’s disease. During 2018, the program helped a cohort of over 30 families affected by Alzheimer’s and diabetes.
Advancing best practices in Alzheimer’s care
By investing in these innovative programs, the Foundation hopes to identify effective models that demonstrate strong potential for replication. We also aim to disseminate best practices to help advance Alzheimer’s care and support for vulnerable patients and their caregivers.
|1 Alzheimer's Association. 2018 Alzheimer’s Disease Facts and Figures. 2 Brown, A.F., Vassar, S.D., Connor, K.I., Vickrey, B.G. “Collaborative Care Management Reduces Disparities in Dementia Care Quality for Caregivers with Less Education.” Journal of the American Geriatrics Society. 2013;61(2):243–251. doi:10.1111/jgs.12079. 3 Callahan, C.M., Boustani, M.A., Unverzagt, F.W., Austrom, M.G., Damush, T.M., Perkins, A.J., Fultz, B.A., Hui, S.L., Counsell, S.R., Hendrie, H.C. “Effectiveness of Collaborative Care for Older Adults with Alzheimer Disease in Primary Care: A Randomized Controlled Trial.” JAMA. 2006;295(18):2,148–2,157. doi:10.1001/jama.295.18.2148.|