The leading health policy journal in the United States, Health Affairs, devotes a theme issue to Alzheimer’s disease this month. Called “The Long Reach Of Alzheimer’s Disease,” the issue examines research, national policy, caregiver support, and end-of-life care in an expansive collection of 28 articles. On April 9, some 100 policy makers, physicians, industry representatives, caregivers, and patient advocates gathered in Washington, D.C., for a press briefing. Eighteen speakers, most contributing authors, discussed what this research implies for future global Alzheimer’s policy.
“This is an extraordinary issue that spans the basic research sciences through translation and global and social implications,” said Richard Hodes, director of the National Institute on Aging, in his keynote speech. He noted recent events and major research studies—such as the December G8 summit meeting (see Dec 2013 news story) and Accelerating Medicines Partnership (see Feb 2014 news story)—that reflect a growing national and global recognition of the gravity of the coming surge of Alzheimer’s cases. “There are reasons for real excitement and hope as we face the urgency of trying to advance our understanding of Alzheimer’s,” Hodes told the audience.
A large portion of the journal issue concentrates on supporting people with the disease. “Our role is to make the case for caregivers and patients currently in need,” said Sarah Dine, senior deputy editor of Health Affairs. She hopes the journal will increase awareness about their plight and inspire good policy. “It’s hard to get funding for care managers who are training for the workforce, or support for family caregivers on the ground,” she told Alzforum.
One urgent problem is that people caring for Alzheimer’s patients have few options for guidance or help. “The healthcare system largely neglects caregiving,” said Jason Karlawish, University of Pennsylvania, Philadelphia. “Although multiple randomized controlled trials have shown that education, skill training, and support benefit not just the caregiver, but the patient, we don’t provide those interventions as a matter of routine care,” he said. “That simply has to change.”
Some speakers are working on models of this type of support. Mary Mittelman, New York University Langone Medical Center, presented her research on an intervention program for caregivers called the New York University Caregiver Intervention. Through counseling, support groups, and ongoing telephone assistance, this program reduced caregiver stress and delayed nursing home placement. Kirsten Hall Long, of K. Long Consulting in St. Paul, Minnesota, claimed that aside from improving the lives of people dealing with disease, this program could save her state up to $1 billion over 15 years. “One way to help policy makers understand the importance of putting Alzheimer’s disease higher on the priority list is [by highlighting] the financial impact,” agreed Bart Peterson, Eli Lilly and Company, Indianapolis.
Some policy makers attended the briefing. Helen Lamont, from the Department of Health and Human Services in Washington, D.C., asked where exactly in the health care system cost would be saved. “We can’t determine who should pay for programs at the outset until we know who’s going to accrue the savings,” she told Alzforum. Long responded that until now, her group had estimated savings only at the level of overall health care costs, not to individual payers
Other researchers are looking into ways to reduce the cost of care for patients. Dustin French, Northwestern University, Chicago, presented a collaborative model in which varied specialists work with a primary care physician to coordinate individualized care for a dementia patient. While a pilot program at the Healthy Aging Brain Center in Indianapolis generated savings, applying it on a large scale would require extensive redesign of current care and payment mechanisms, French said. With the aid of a Healthcare Innovation Challenge Award from the Centers for Medicare & Medicaid Services, participating institutions are working to expand this program and develop a business model that will fit into the current financial framework of the healthcare system.
For their part, state and national governments are drawing up game plans to coordinate services that will handle a growing number of dementia cases. Three articles examine such strategies and make recommendations. Richard Fortinsky, University of Connecticut Health Center, Farmington, compared national strategies from Australia, England, France, the Netherlands, Norway, Scotland, and the United States. He outlined a series of transitions made by patients, from diagnosis to finding community services, going to the hospital, moving to a residential care facility, and entering end-of-life care. Fortinsky found that while most countries addressed early transitions in Alzheimer’s disease, they tended to neglect later ones. Implementing strategies to address advanced stages of disease—for instance, ones that prevent unnecessary hospitalizations—would help countries meet the needs of patients and their families, he and colleagues wrote.
Lisa Barnes, Rush University Medical Center, Chicago, described obstacles in research with ethnic minorities. Scientists estimate that minorities will make up half of the elderly population by 2050, yet they represent a small fraction of participants in longitudinal studies and clinical trials. It is unclear whether results from non-Hispanic white populations generalize to them, Barnes said. She suggested actively recruiting from underserved communities and targeting educational campaigns toward them. Barnes also emphasized the need to build a diverse health care workforce that reflects rapidly growing populations that are heavily burdened by Alzheimer’s.
Preventative and cost-cutting strategies could be implemented now, even while a cure for Alzheimer’s remains elusive. Howard Fillit, Alzheimer’s Drug Discovery Foundation, New York, presented a model in which a10 percent reduction in the prevalence of diabetes, hypertension, cardiovascular disease, or obesity—all risk factors for Alzheimer’s—would lower both risk and cost of dementia. The country is capable of implementing these changes today, Fillit said.
Questions and discussion continued long after the briefing was over. “I’m happy there’s a broader audience talking about Alzheimer’s,” Lamont told Alzforum. “Sometimes it feels like the same people are talking about it. It will be helpful to have cross-fertilization of the various parts of the research continuum.” Health Affairs editors hope these discussions will continue, particularly among people who make federal and state policy, said Dine. All articles in the April issue can be found here.—Gwyneth Dickey Zakaib