https://orcid.org/0000-0001-6065-1276
Dementia care is complex and costly. Research by the Milken Institute projects that the direct and indirect costs of dementia will reach nearly $380 billion within the next 20 years unless we find new treatments and change the way dementia care is delivered (Super et al., 2019). Too often, people living with dementia and their caregivers must navigate complicated health and long-term care systems alone, resulting in suboptimal care and inadequate support to caregivers.
There is a growing shortage of health and long-term care providers with specialized training in geriatrics and dementia care. To build capacity, we must expand the pool of qualified health professionals to effectively identify people living with dementia, tailor services to meet their needs and those of their caregivers, and ensure they get the right care at the right time. As new therapies become available, people at risk for or living with dementia must be able to access effective and personalized treatments.
To address these challenges, the Milken Institute Center for the Future of Aging launched the Alliance to Improve Dementia Care (the “Alliance”) in July 2020. Uniquely positioned at the intersection of health, business, and policy, the Milken Institute Center for the Future of Aging formed the Alliance at the behest of stakeholders across multiple sectors. This spotlight article focuses on the creation and evolution of the Alliance, highlighting key organizational and contextual factors for effective partnerships.
The Launch
At the Milken Institute, we catalyze practical solutions to global challenges. In 2019, the advocacy group UsAgainstAlzheimer’s requested an update to our 2016 report, “The Price Women Pay for Dementia: Strategies to Ease Gender Disparity and Economic Costs” (Kubendran et al., 2016). Although only three years had passed since its publication, much had changed in the field of dementia. Gender disparities still exist, as women disproportionately both live with dementia and are dementia caregivers, and heightened awareness of racial and ethnic inequities had emerged. Among adults aged 65 and older, African Americans are about two times and Hispanics are about one and a half times more likely to have dementia compared to Whites (Alzheimer’s Association, 2021). Also, the Lancet Commission published exciting new evidence supporting the idea that certain risk factors for dementia are modifiable (Livingston et al., 2020). To support an updated report, we engaged several influential stakeholders, including AARP, Bank of America, Biogen, BrightFocus Foundation, The John A. Hartford Foundation, and Home Instead. Based on new evidence and a better understanding of the underlying causes of dementia, the Milken Institute analyzed data, conducted interviews, and hosted consensus-building sessions with thought leaders, experts, industry stakeholders, and advocates. This work culminated in a report, “Reducing the Costs and Risk of Dementia” (Super et al., 2019), which outlined actionable recommendations to improve brain health, reduce disparities, and ultimately change the trajectory of Alzheimer’s disease and related dementias.
The report recommendations and the process for arriving at them resonated with all involved, and we were urged to carve out a continued role even though the dementia space is a crowded field. Several advocacy groups (e.g., the AARP, Alzheimer’s Association, LEAD Coalition, UsAgainstAlzheimer’s) champion legislative and regulatory initiatives to improve the lives of people living with dementia and their caregivers. Leading pharmaceutical companies and academic researchers have been investigating disease-modifying therapies for decades. And in 2012, the Advisory Council on Alzheimer’s Research, Care, and Services, consisting of public and private experts across the United States, was created to guide the implementation of the National Alzheimer’s Project Act. But no single entity existed to focus on improving care for people living with dementia and their caregivers.
Using the convening experience and expansive network of the Institute, the Alliance brought together partners from health systems, provider groups, industry, research, advocacy, philanthropy, and government to better communicate, collaborate, and advance policy and practice recommendations to improve dementia care. We made a key decision not to compete with other stakeholder groups, but rather to complement them and add value to ongoing work.
Using the convening experience and expansive network of the Institute, the Alliance brought together partners from health systems, provider groups, industry, research, advocacy, philanthropy, and government to better communicate, collaborate, and advance policy and practice recommendations to improve dementia care.
With its mission to improve timely detection of dementia and to increase access to treatment and coordinated care and advance health equity for people at risk for and living with dementia and their caregivers, the Alliance garnered the support of five cross-sector founding sponsors: the AARP, Alzheimer’s Association, Biogen, Bank of America, and the John A. Hartford Foundation. These entities, along with 12 supporters who have since joined, recognize that no single organization or sector can solve the complexity of dementia care and that a neutral and trusted convener is needed to foster intersectoral coordination and collaboration.
Evolution
The scope of dementia care includes detection and diagnosis, care planning, delivery of health and long-term supports and services, and end-of-life care, plus all the transition points and moments of crisis in between. The Alliance engages decision-makers across eight stakeholder groups (Figure 1) to identify gaps in care and propose policy and system solutions. To date, members represent more than 90 organizations. Our objectives are to:
Engage policymakers through policy briefs, op-eds, and virtual briefings, and connect with leading stakeholders to advance recommendations to improve dementia care;
Integrate public- and private-sector efforts to identify scalable solutions;
Mobilize industry leaders to create solutions to optimize the workforce, build system capacity, and integrate service and support; and
Advance payment and delivery models to align care preferences and incentives.
We also prioritize three focus areas to guide our work and programmatic activities:
Reducing health and economic disparities;
Building the workforce and system capacity; and
Scaling comprehensive dementia care models.
Alliance to Improve Dementia Care stakeholders.
Leveraging the Alliance’s diverse membership, we formed working groups for each focus area to guide content, outcomes, and speakers for expert roundtables. Our roundtables engaged between 42 and 51 participants, who met virtually and engaged in moderated breakout groups to debate and drive consensus. The roundtable output was synthesized and supplemented by research and key opinion leader interviews, resulting in consensus-built recommendations that are summarized in these reports: (a) “Better Brain Health Through Equity” (Ahuja & Levy, 2021); (b) “Building Workforce Capacity to Improve Detection and Diagnosis of Dementia” (Ty & McDermott, 2021); and (c) “Scaling Comprehensive Dementia-Care Models” (Super et al., 2021). To amplify the recommendations, the Alliance disseminates social media tool kits, leverages the Institute’s platform events to build awareness, holds briefings with policy-makers and journalists, and participates in a range of external events.
Organizational and Contextual Factors for Effective Partnerships
To examine the impact of the Alliance’s first year of operation, we apply and expound on a framework of key factors for effective multisectoral partnerships, developed as part of the Centers for Disease Control and Prevention’s (CDC’s) Preventing Chronic Disease Dialogue (Woulfe et al., 2010), and on a resource guide from USAID on multisectoral coordination (Health Policy Project, 2014).
Partnership Resources: Since the Alliance’s launch, we have obtained sustainable funding to support its mission. Roundtables leverage the skills and expertise, information, and connections that working groups and participants bring to the table. Each roundtable includes someone with a lived experience to help ground the discussion.
Leadership: As the former executive director of the White House Conference on Aging, Nora Super has received wide recognition for her nationwide efforts to improve the lives of older Americans. She has brought her strong connections in policy, business, and advocacy across multiple sectors to help attract and engage members of the Alliance. Diane Ty has led several multistakeholder initiatives in aging, caregiving, and national service, and draws heavily from her experience leading Georgetown University’s multisector Portion Balance Coalition (https://www.portionbalance.org), formed to address the obesity epidemic. Both of us lost our fathers to Alzheimer’s, an experience that drives our passion, commitment to action, and emphasis on inclusion.
Organizational Structure: Alliance members meet monthly to hear presentations and discuss the latest developments in dementia care. A steering committee comprised of Alliance funders provides strategic guidance and insights to inform our work. Over time, we have added to our staff and have been more transparent about our decision-making process.
Membership: Alliance membership has more than doubled since the Alliance’s inception and represents sector and cultural diversity. As one of our members, David Reuben, MD, chief of the University of California, Los Angeles’ Division of Geriatrics, recently stated, “because of its diverse and enthusiastic membership, I believe that the Alliance has substantial potential to spark the necessary changes. including adequate payment for high-quality dementia care, dissemination of successful models, identification of additional needs (e.g., training), and sharing of best practices” (Reuben, 2021).
As one of our members, David Reuben, MD, chief of UCLA's Division of Geriatrics, recently stated, “Because of its diverse and enthusiastic membership, I believe that the Alliance has substantial potential to spark the necessary changes including adequate payment for high-quality dementia care, dissemination of successful models, identification of additional needs (e.g., training), and sharing of best practices.”
Quality of the Relationships: Communication and ongoing feedback enable the Alliance to evolve and establish a sense of mutual trust, respect, and commitment. Policy and practice recommendations are shaped by multisectoral inputs. Working group members review recommendations, synthesized from the roundtables, and provide input on draft reports. Experts within and outside the Alliance also share case studies of effective practices and relevant research.
Our focus on consensus building has turned out to be the secret sauce in establishing a successful coalition. Because so many stakeholders had been engaged in developing the recommendations, they are invested in moving them forward to implementation.
Looking Ahead
The Alliance has become a critical platform for building consensus and deriving key recommendations for impactful dementia care policies. Looking ahead, we aim to foster partnerships and design pilots, as appropriate, collaborate with the CDC BOLD Public Health Centers of Excellence, and work more deliberately to activate our recommendations with federal and state policymakers and practitioners. The three BOLD Public Health Centers of Excellence are focused on dementia risk reduction, early detection of dementia, and dementia caregiving. We want to further diversify our membership to attract more health systems, payers, and health and long-term care professional associations, especially given our focus on building the workforce and system capacity. Although the field is seeing progress, we will only achieve better quality of life for people with dementia and their caregivers by galvanizing key stakeholders toward a shared goal.
Funding
This work was supported by the AARP, Alzheimer’s Association, Alzheimer’s Drug Discovery Fund, Bank of America, Biogen, BrightFocus Foundation, Cognivue, Cortexyme, Edward Jones, Eisai, Eli Lilly, GE Healthcare, Genentech, HFC, Home Instead, Humana, and The John A. Hartford Foundation.
Conflict of Interest
None declared.
