A February article written for AARP members asked: “Where’s the War on Alzheimer’s?”
U.S. taxpayers have spent about $1.7 trillion on the “War on Terror” since 2001. But during that time, the federal government has spent a fraction of that amount, averaging less than $500 million per year, to battle a disease that has an estimated $214 billion-per-year price tag and steals the memories, independence, dignity and ultimately the lives of the estimated 5.2 million Americans who now suffer with it.
That number is expected to double by 2050 as more baby boomers — many of whom are already dealing with parents who have the disease — reach their mid 60s and begin getting the devastating diagnosis themselves.
“Alzheimer’s is becoming a national catastrophe,” said Dr. David Loewenstein, a professor at the University of Miami Miller School of Medicine and principal investigator of a new five-year Alzheimer’s study. “It could bankrupt the country if we do not find a cure.”
With its large older population, Florida already is home to about 10 percent, or 500,000, of the country’s current Alzheimer’s cases.
And, “In Miami-Dade County, 15 percent of the population is above age 65 and that number also is predicted to double,” said Dr. Marc Agronin, medical director for mental health and clinical research at the Miami Jewish Health Systems. “At some extent we are at ground zero for the disease. The need is enormous and growing.”
There are only limited treatment options for the now irreversible, progressive and very complex brain disease. There are no Alzheimer’s survivors.
But despite a slew of failed clinical trials, there is some cause for hope.
National and state funding for Alzheimer’s research is beginning to increase, albeit slowly, and more of it is now finding its way to South Florida for new trials and studies that are collaborative efforts.
On Aug. 4, the first Alzheimer’s Disease Research Center based in Florida officially began operation with a five-year grant that provides about $1.5 million per year from the National Institutes of Health. The grant was awarded to a partnership between Mount Sinai Medical Center in Miami Beach, which is handling the clinical component, and the University of Florida, which is handling data management and statistics, neuropathology, administration and outreach, recruitment and education.
Considering there are 30 such centers around the country, and only California has more Alzheimer’s cases, a center based in Florida was long overdue, say those dealing with the disease in the state. (There is a satellite center in Jacksonville — run by the Mayo Clinic.)
One of the important functions of the new center is to study and research the disease among the Hispanic community and how it compares to the non-Hispanic community, said Dr. Ranjan Duara, medical director at the Wein Center for Alzheimer’s Disease and Memory Disorders at Mount Sinai and the leader of the new center’s clinical core.
Standardized cognitive tests in English have been translated into Spanish and the center will look into the sensitivity and cultural aspects of these translations to see how they work in comparison to those in English. The goal is to develop standardized cognitive tests that work with Spanish-speaking patients that can be used throughout the country.
The disease is named after German psychiatrist Alois Alzheimer, who in 1901 identified the first case in a 50-year-old woman. Alzheimer’s slowly destroys memory and thinking skills, causes the inability to communicate and carry out simple tasks, sometimes leads to hallucinations, delusions and paranoia — and eventually causes the body to shut down and the person to die. Alzheimer followed his female patient until she died in in 1906, when he announced his findings.
More than a century later, it is still difficult to detect the disease until symptoms surface. By that time, the brain has been deteriorating for an average of 15 to 20 years.
“I liken it to a forest fire,” Agronin said. “When the symptoms show up, half the forest is burned down already. We can put out a few flames, but we can’t undo the damage. We would like to be able to identify people when the disease is just a puff of smoke.”
That’s why a major focus among Alzheimer’s researchers is now on developing ways to better diagnose the disease, which should help lead to better treatments and ultimately the development of a cure.
Agronin, a geriatric psychiatrist, has been working on Alzheimer’s since 1999 and oversees one of the largest clinical trial programs in the state with 16 studies taking place at Miami Jewish Health Systems.
Over the past 15 years, despite the lack of funding, an entire gamut of studies has led to a much deeper understanding of the disease, including likely causes, risk factors and better ways to diagnose it, especially with new brain scans that can identify beta-amyloid proteins in the brain, he said. (Scientists generally believe that two types of toxic proteins, beta-amyloid and tau, are hallmarks of the disease.)
“The bad news is that within this timeframe, there have been over 200 clinical trials for Alzheimer’s disease and none of which have brought a new medication to the market,” Agronin said. “Over 99 percent of these trials have failed. It’s very frustrating for patients and their loved ones. It’s frustrating for researchers. Nonetheless we remain undaunted and are forging ahead with trials.”
Loewenstein said he is excited about the new $2.3-million study at the University of Miami, which is also working in conjunction with the new research center. The study will use “very novel cognitive tests” developed at the university for different multicultural populations to detect the earliest stages of abnormal memory.
“They are very much like cognitive stress tests,” he said. “If you have a regular EKG of the heart, a heart defect may not show up until you put somebody on an exercise machine,” he said. “So our cognitive tests are like exercise stress tests. We stress the system and we are able to detect very early pathological [abnormal] aging.”
Duara will coordinate detailed neurological exams that will use MRI scans to look at the brain’s structure, PET scans to look at the function of the brain and will tap spinal fluid to look for abnormal proteins. These are biomarkers.
The cognitive and neuropsychological test results are correlated with the biomarkers to try to determine what is going on in the brain as the disease progresses, and what is happening in brains of people who do not get the disease.
These studies cannot be conducted without a small army of volunteers, all 70 and older. The center needs about 500 people, with a goal of half of them to be Hispanic, to participate.
About 100 people are needed with completely normal brains. Loewenstein calls them “super agers.” About 300 are needed who have different stages of cognitive impairment. And about 100 people are needed who have severe dementia. These study participants will be followed over time.
Duara said it is critical that the center also create a “brain bank” that will collect brain tissue for research. “It will be from people already evaluated during life and recruited during life who are willing to donate their brains when they die,” he said.
Conquering Alzheimer’s will be a long process that certainly will not happen overnight, said Dr. Todd Golde, director of the UF Center for Translational Research in Neurodegenerative Disease and director of the new research center.
But it’s a battle the state should continue to support, not only for the disease’s devastating toll on patients and their families, but to the state’s pocketbook. Florida is now paying more than $30 million a month in Medicaid payments for Alzheimer’s patients in Florida nursing homes, Golde said.
“Just delaying institutionalization a few days would pay for all the research budget of the state of Florida,” he said.
If you go
On Sept. 3, the Alzheimer’s Association is hosting a “Coffee and Conversation with Congressman Ted Deutch” from 8:30 a.m. to 10 a.m. at the Park Summit Five Star Senior Living Community, 8500 Royal Palm Blvd. in Coral Springs. RSVP to Jennifer Braisted, firstname.lastname@example.org, 561-967-0047.
For more information about participating in Alzheimer’s trials and studies:
▪ Contact Dr. David Loewenstein at Dloewenstein@med.miami.edu
▪ Call the Miami Jewish Health Systems hotline at 305-514-8710
▪ Call the Alzheimer’s Disease Research Center at 305-674-2018 and ask for Ana Betancourt