The National Institute on Aging has awarded a five-year grant worth up to $53.4 million to Boston’s Hebrew SeniorLife and Brown University to find ways to improve the hodgepodge of care now available for people with Alzheimer’s disease and related dementias.
Under the grant — one of the largest federal awards ever for dementia care — the two parties will lead a so-called “collaboratory” of researchers from more than 30 universities and hospitals ranging from Harvard University and Massachusetts General Hospital to Duke University, the University of Pennsylvania, and the University of California Los Angeles.
They will run up to 40 pilot programs to develop care protocols for people with dementia. Researchers will take ideas and experiments pioneered in small settings, such as using music to calm agitation in Alzheimer’s patients, and test them in large-scale clinical trials.
The best practices could include ways to support caregivers, like helplines and mindfulness programs, and establish better prescribing procedures at hospitals and nursing homes to minimize side effects from the medications given to people with cognitive impairment.
Much of the focus will be on boosting quality of life for people with Alzheimer’s and other forms of dementia while scientists continue to search for disease-modifying drugs.
“We’re going to be creating a knowledge base for nonpharmacological interventions,” said Dr. Susan Mitchell, senior scientist at Hebrew SeniorLife’s Marcus Institute for Aging Research and coleader of the new federally funded collaboration.
More than 5 million Americans now live with Alzheimer’s and other memory-ravaging diseases, a number that’s expected to double by 2050, according to the Alzheimer’s Association. The cost of dementia care already tops $226 billion annually in the United States.
As a series of closely watched Alzheimer’s drug development programs have failed, US officials have become increasingly worried about the mounting burden of treating the patient population — and the lack of a national standard of care for people with dementia.
“It’s a real hodgepodge of care,” said John Haaga, director of behavioral and social research at the aging institute in Baltimore, one of more than two dozen research centers that make up the National Institutes for Health. “What happens to you depends on where you are, what health care system you’re in, and when you get diagnosed. There hasn’t been enough research on care.”
Vince Mor, the collaboratory’s other coleader, and a professor at Brown’s School of Public Health in Providence, said the new collaboration can be a kind of incubator for innovation in care practices.
The goal, he said, is to test new ideas on a large scale quickly.
“We’re focusing on a population that is often ignored by health care systems,” he said.
Haaga said the outcomes could help millions of people for years to come.
“We want to see researchers doing trials in realistic settings on ways to improve care for people with dementia,” he said. “Even if the science goes the way we hope, and we get a disease-altering treatment, we’ve still got millions of people who will be living with this for years.”
Researchers at Hebrew SeniorLife, a Harvard-affiliated senior services and research nonprofit based in Roslindale, have worked on dementia care for decades in partnership with their counterparts at Brown’s School of Public Health. The two parties were selected to manage the collaboratory.
While the grant is expected to total $53.4 million over five years, the outlay will be subject to annual changes in federal budget allocations.
Mitchell called the ballooning population of people with dementia a public health crisis.
“The focus has been on preventing and reducing the symptoms, and finding a treatment,” she said. “There is no cure right now, and a cure is many years away. But we have to have a strategy for managing the millions of people who have this disease.”