Q & A with Matthew Baumgart Vice President of Health Policy, Alzheimer’s Association

Shifting Focus: The Value of Investing in Dementia Treatment, Care, and Support

1. We are seeing record investment in developing therapeutics to slow Alzheimer’s disease and related dementias. Can you talk about the importance of also investing in dementia care and social services?

Providing care for an individual living with dementia can be unique and challenging. Individuals and caregivers have to navigate health and social needs ranging from working with primary care doctors and specialists to finding support services in the community. These challenges take a heavy toll on caregivers and have a tremendous impact on the health-care system and the US economy.

The costs of health care and long-term care for individuals living with Alzheimer’s or other dementias are substantial, and dementia is one of the costliest conditions to society—$321 billion in 2022 alone. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial, and physical difficulties.

We also know that as the prevalence of Alzheimer’s disease increases, so does the need for additional members of the paid workforce who are involved in diagnosing, treating, and caring for those living with the disease. Yet, there are gaps in that workforce—both in terms of numbers and knowledge about dementia.

So, it’s not enough to just focus on treatments because people with the disease and their caregivers still need care and support—and they will continue to do so even as more and better treatments become available. Treatments are not in lieu of care and support; they are in addition to care and support, and we must invest in both if we are going to improve the lives of those living with dementia and their caregivers.

2. The Alzheimer’s Association is working on legislation to streamline the complicated health-care maze for people living with dementia and their caregivers through the Comprehensive Care for Alzheimer’s Act. Please explain how comprehensive dementia care can improve the lives of those impacted by dementia and the potential cost savings to the federal government.

Dementia care management is a model of care that enables individuals with Alzheimer’s and their caregivers to more seamlessly navigate the health-care and social support systems and obtain more timely access to care. Dementia care management may include care coordination and navigation, management of chronic conditions, and caregiver education and support.

Comprehensive dementia care has been shown to reduce costs while providing better quality care. The Comprehensive Care for Alzheimer's Act model would provide person-centered services, including the development of a dementia care plan, care coordination and navigation, and caregiver education and support. In addition, the model would ensure patients have access to an interdisciplinary team of providers with expertise in dementia care management and reimburse providers based on the value of care they provide rather than the volume. If such a program were available to all seniors with dementia, estimates are that it would save Medicare nearly $21 billion over 10 years.

3. Can you describe the advancement in dementia care that you are most excited about?

Technology continues to advance in ways that can improve health-care outcomes for individuals and caregivers, including by improving the capacity of the dementia care workforce. A great example of this is the Association’s Alzheimer’s and Dementia Care Project ECHO® (Extension for Community Healthcare Outcomes) Program. Project ECHO connects dementia care experts with health-care teams from primary care practices in a free continuing education series of interactive, case-based video conferencing sessions. The program enables primary care providers to better understand Alzheimer’s and other forms of dementia and emphasizes high-quality, person-centered care in community-based settings. Nearly 100 primary care practices and over 300 health-care providers have completed this ECHO training since 2018, influencing more than 370,000 lives.

4. You are a Steering Committee member of the Milken Institute Alliance to Improve Dementia Care. How has your engagement with the Alliance helped to inform or further your work?

By bringing together individuals and groups, many of whom are outside of the traditional dementia space, the Alliance has created a broad-based coalition in support of critically needed improvements in the health-care system—from increasing early detection and diagnosis to expanding the capacity of the workforce to ensuring that efforts reach those disproportionately affected by Alzheimer’s and those from traditionally underserved communities. This has helped increase attention on the Alzheimer’s issue and helped build critical support for action. For example, on the issue of dementia care management, the Alzheimer’s Association is very grateful to the many members of the Alliance who have endorsed the Comprehensive Care for Alzheimer’s Act. This widespread support has helped secure support from one-third of Congress in less than two years.