National Alzheimer's disease plan unveiled as aging baby boomers' needs drive urgent action
On the day before he left for Washington to push for a national plan to fight Alzheimer's disease, Roger Bushnell leaned over his mother's wheelchair as always.
"Love ya," the 49-year-old Melvindale man murmured with a quick kiss.
For the first time, there was no answer. Colleen Bushnell, 86, just stared.
On Tuesday, the National Institutes of Health unveiled the first of long-awaited details of the plan, which will focus federal resources to help Americans such as the Bushnells -- both the estimated 5.4 million Americans with the incurable disease as well as their often-exhausted caregivers who, as baby boomers heading toward their retirement years, face increasing odds of developing Alzheimer's and related dementias themselves.
Among the highlights of the plan are two major clinical trials: A $7.9-million effort to test an insulin nasal spray for treating Alzheimer's and a more than $16-million study that focuses on prevention among people at the highest risk for Alzheimer's.
"This is formal recognition that we have a major problem," said Dr. Henry (Hank) Paulson, director of the University of Michigan Health System's Michigan Alzheimer's Disease Center.
According to the Alzheimer's Association, 1 in 8 Americans 65 and older has Alzheimer's, and nearly half of people age 85 and older have the disease.
By 2050, it is estimated that up to 16 million Americans will have it. Or to look at it another way: Someone develops Alzheimer's in America every 68 seconds now; by mid-century, it will be every 33 seconds, according to the Alzheimer's Association.
"I'm a baby boomer, and we're in this tidal wave," said Bushnell, whose father died in 2010 with Alzheimer's and whose mother has been diagnosed with Alzheimer's as well as dementia. "Something has to be done."
Bushnell has spent six years advocating for more awareness of Alzheimer's. In April, he made the more than eight-hour drive to Washington to push for implementation of the national plan, which was required by the National Alzheimer's Project Act (NAPA) passed by Congress last year.
And its goal is ambitious: Prevent and treat Alzheimer's by 2025.
To that end, millions of dollars in new federal money will fast-track research.
For example, a four-month pilot trial at the University of Washington suggests a link between insulin, delivered in a specialized nasal spray, and improved brain function. Fueled by $7.9 million over five years, the expanded study announced Tuesday will recruit 240 volunteers across the U.S. to receive insulin treatment or a placebo.
At the end of the year, researchers will compare cognition, memory and functional performance between the two groups.
A second study, also announced Tuesday, is an international collaboration that focuses on a unique and large family in Colombia whose members share a genetic mutation known to cause observable signs of Alzheimer's disease around age 45.
Researchers want to know whether several years of an antibody treatment, called crenezumab, will clear away abnormal amounts of amyloid -- the telltale protein in the brains of people with Alzheimer's. A smaller group of Americans also is involved in the study, along with the Colombian family, and the National Institutes of Health will contribute $16 million to the effort.
The new plan already has established www.alzheimers.gov. Unveiled Tuesday, the website offers information on the disease, caregiving and even paying for care and making long-term plans.
Michigan Alzheimer's awareness advocate said they were pleased by the news of the national plan, noting that better understanding of the disease might one day lead to a cure.
In the short run, the plan will help raise awareness, said Dian Wilkins, executive director of the Alzheimer's Association, Greater Michigan Chapter, which is in Southfield. According to the association, as many as one-half of people who satisfy the criteria for Alzheimer's and other dementias have not been diagnosed.
The new website might prompt families to find out more and seek help.
"Hopefully, it (the national plan) has a ripple effect, for families, for practitioners, for social workers," she said.
Bushnell, too, said he was "thrilled" at the announcements Tuesday. But he was sad, as well.
Bushnell's father died with Alzheimer's -- a loving man who grew angry as the disease took hold of his behavior, and he no longer recognized the woman with whom he held hands and whom he showered with kisses.
And these days, Bushnell's mother no longer shows signs of recognizing her son, though sometimes -- if Roger Bushnell catches her at the right time -- she'll sing little bits of an Andrews Sisters song or a Christmas carol with him.
She now stays at Maple Heights Retirement Community, a senior living facility in Allen Park, where her son became executive director after having spent most of his career in the restaurant business. Bushnell said he's lucky -- he gets to see her as part of his job.
Other caregivers wear thin, but get little to no help.
In Michigan, more than 504,000 caregivers contribute to nearly $7 billion in uncompensated care, according to the Alzheimer's Association.
"It's overwhelming -- the extent of the disease," Bushnell said.
By Robin Erb
Detroit Free Press Medical Writer
Detroit Free Press Medical Writer