ARTICLE IN BRIEF
A Senate report on aging compared research funding, focus, and care options for Alzheimer's disease in five countries with similar aging populations, and found that the US lags in several key areas.
Neurologists say that it's no surprise that a recent federal report found that the United States lags behind Japan, Australia, France, and Britain when it comes to addressing the challenges of Alzheimer's disease (AD) and dementia patients. But they contend that's not reason to lose hope.
The report, created by the United States Senate Special Committee on Aging and released in December, compared the US to countries chosen because they face similar aging population booms and issues with AD. It addressed issues related to diagnosis, research, and treatment as well as health care provider training and long-term care options.
“It is the hope of the committee that the facts and findings presented here will contribute to the sense of urgency felt by many policymakers, researchers, and families around the world to address this growing public health threat,” wrote the authors of the report, chaired by former Senator Herb Kohl (Dem) of Wisconsin. [Sen. Kohl retired from the Senate as of Jan. 3.]
The number of AD cases in the United States is expected to triple in the next 25 years, and the cost of treating those patients is predicted to reach $20 trillion over the next 40 years.
Among the findings, the report noted that in the US, 6.2 percent of the country's population (aged 60 and over) has dementia, meaning it has one of the highest rates of the disease. But the lowest number of patients in the US receive long-term care involving paid providers and cash benefits through consumer-choice or cash allowance programs; 6.5 percent compared to almost 14 percent in Australia.
Other countries have created creative long-term care options complementing the use of nursing homes. France, which has had three national dementia and AD plans since 2001, has created “memory centers” — centralized clinics and adult day-care units for diagnosis and follow-up including specialized case managers, for example — to help families who are overwhelmed.
Each country has focused its spending on research — the United Kingdom doubled its spending for dementia research, from $42 million in 2012 to $107 million by 2015. And each country has its own unique focus for research: Australia emphasizes t he role that lifestyle and diet may play in prevention of AD; the French increased its participation in clinical trials globally; and Japan's funding increased specifically in genomics, large-scale basic science, and integrative neurology.
The US tends to focus on the delivery of services, particularly hospital-based health care, said Jason Karlawish, MD, professor of medicine, medical ethics and health policy at the University of Pennsylvania Perelman School of Medicine. Concerns about the costs of an aging population have been appearing in reports since the 1980s, he said, but it's only recently that initiatives — like the National Alzheimer's Plan — took root.
CAREGIVER ROLES VARIED
One aspect that all countries are struggling to handle is the change in the standard caregiver role, he said. Where once family members stepped in to care for aging parents, children who work may not be able to take in family members, or they may live far away.
“I was just talking to a physician in Mexico who remarked on the increasing costs of cognitive impairment and noticed that in Mexico, the size of the family is shrinking and the expectation that one of the adult children can take care of a parent is not so secure,” said Dr. Karlawish. “When there is dispersion of the family social order it becomes a public problem.”
According to the Senate report, about 50 percent of long-term care patients receive care at home in the US, compared with 77 percent in Japan where many services are covered including housekeeping and personal care. Japan also had the least number of patients receiving long-term care in institutions, 37.4 percent, compared with France at 72.5 percent.
In Australia, the government has provided “individually tailored packages” for long-term care for older patients. The packages are developed to fit the specific needs of the patient, including meal delivery, domestic assistance, laundry and transportation to appointments, as well as temporary in-home respite care. The plans aim to let patients stay in their homes as long as possible, and about 54 percent receive care at home.
Experts involved in research and advocacy on AD allowed that the report had interesting insights — offering some caveats in their commentary. It is unrealistic to expect the United States to create a medical system mirroring others described in the report, said Robert J. Egge, vice president of public policy for the Alzheimer's Association. The US medical system is more fragmented and often more complicated than other countries, combining private care with Medicare and Medicaid.
“The report is very instructive in its international review, but it's a trap to think we can simply change our system in providing health care to match other countries,” he said. “We've inherited the system we have and the right approach isn't to try and retrofit what worked in one country to ours.”
Researchers said the report was a good evaluation of the current state of the issues. “It nicely documents where the field is and where the field needs to go,” said Ronald C. Petersen, MD, PhD, director of the Mayo Clinic Alzheimer's Disease Research Center in Rochester, MN. “The glaring aspect was the comparison in caregiver support, focusing on where people reside when they develop this disease and who is paying the dollars to care for them.”
Dr. Petersen is also chairman of the National Alzheimer's Project Plan advisory committee, which developed the first US National Alzheimer's Plan, released in May. The national plan focuses on improving diagnosis, expanding support for patients and their families and investing money for research funding. The National Alzheimer's Project Act set aside $50 million for research in 2012 and another $100 million for 2013, including $80 million for research and $10 million in caregiver support.
One of the challenges researchers face in asking for increased funds in economically rough times is that it's hard to get policymakers, insurance companies, and the pharmaceutical industry to see the long-term benefits, said Bruce Lamb, PhD, a staff scientist in the department of neurosciences in the Lerner Research Institute at the Cleveland Clinic.
Even with the increased funding, researchers — particularly young scientists — are having a tough time getting grants to make headway into the disease.
“We have to find a way to rally for the resources,” Dr. Lamb said. “On one hand, it's not a great time to be asking for money, but on the other side, the spending predictions are staggering, we're talking a couple hundred billion in the next few years.
“If you think about it, for every $4 we're spending for care, it's about one cent for research, but investing in research that could prevent, slow, or stop the disease would save more in the long term.”
Dr. Petersen, of Mayo, agreed. “It couldn't be a worse time to bring up these kind of issues at a federal level,” Dr. Petersen said. “But the country cannot afford to wait until economic times are better because these problems are going to unfold in dramatic fashion over the next several years.”
Changes in US care won't happen immediately, Egge, of the Alzheimer's Association, said, and while it's important to be selective in what aspects get funded, there is money to support increased needs.
The truth of the matter, Egge said, is that these tough economic times point all the more to addressing Alzheimer's because it is one of the major cost drivers behind the entitlement crisis the nation needs to solve.
“One of the most important aspects is that health care providers across the system should be trained to detect and diagnose Alzheimer's and dementia symptoms,” said Egge. “We have to have a system to create care planning and support for families, and the earlier someone is diagnosed we can offer a more comprehensive services to avoid care transitions and other points that are really difficult.”