Doctors at the University of Kansas School of Medicine-Wichita plan an 18-month clinical test of an experimental treatment they say might stop and even reverse Alzheimer’s disease.
Suggesting that any treatment could do that is significant, given the history. There have been other such claims for other such treatments, and they have failed so far.
If it works, the treatment could solve or significantly alleviate the suffering of more than 8,000 people in Sedgwick County, the 5.4 million Alzheimer’s sufferers nationwide, and millions of caregivers who suffer and die early deaths from stress.
KU says the disease causes at least $183 billion in annual health care costs.
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Matthew Macaluso, one doctor at KU involved with the test, says KU researchers have some hopes for success in testing the treatment on humans, which will be done with intravenous infusions as part of a nationwide testing process. “It could be a game changer,” he said.
Alzheimer’s drugs currently on the market merely slow the progress of Alzheimer’s, he said. This treatment, if it works, would stop and reverse the course of the disease.
If it works, it could be a few years before testing is completed and the Food and Drug Administration gives approval.
Duane Smith of Wichita is one caregiver hoping it works. Fourteen years ago he traveled the United States as a sales representative for Pioneer Balloon Co. of Wichita. He’d been married to Pat Smith since 1953, when both graduated from Wichita State. Pat was a mother, a grandmother, bright, decisive, a teacher by temperament and education. “She gravitated to the leadership of any group she ever joined,” Duane said. She took in kids as a day care provider.
Alzheimer’s disease stole her mind and forced Duane into retirement. His job now, at age 81, is to go every day to the Andover care facility where Pat lives, feed lunch to her, clean her teeth, rub moisturizer on her face, and talk, even though all she can respond with is sleep, or jabber. She’s comatose, or nearly so, every day.
The stress on caregivers like him is so great, Smith said, that he and many others learned how to cope with it by studying the writings of Viktor Frankl, an Austrian neurologist and psychologist who formulated many of his survival suggestions while surviving the Holocaust as a prisoner in German Nazi death camps.
If there is a treatment, Smith is for it.
Researchers do not fully understand how Alzheimer’s disease operates. But they know that age breaks down bodily systems, including those that clear accumulations of abnormal proteins in the brain. The amyloid plaque that forms on the brain when the body fails to clear it is toxic. It impairs brain activity, increasingly so as it advances.
Macaluso, who works in the psychiatry and behavioral sciences department at KU-Wichita, said the clinical trial will operate with a drug company whom he declined to name. The company has manufactured an antibody that researchers hope will bind to the plaques, break them down and clear them away.
Testing of the compound will be done at multiple sites all over the country, he said. He did not know how many sites or patients will be involved.
During the 78-week trial here, patients with mild or moderate dementia will receive an intravenous infusion every 13 weeks of either the study drug or a placebo. The KU researchers need five volunteers. Anyone interested in volunteering can call Kelli Omo at the KU Wichita Clinical Trial Unit at 316-210-1048. Patients will be monitored for safety, including with MRI tests. They will be sent home between infusions. They will be compensated for their time, he said. Some patients will receive a placebo instead of the treatment.
Neurologist Andrew Massey of Wichita is not working with the clinical trial, but he has treated many Alzheimer’s patients. He is a an associate professor of internal medicine at the School of Medicine at KU in Wichita. If this treatment succeeds, he said, it would be a first. There have been other trials of other treatments. A few years ago, he said, a company developed a treatment that seemed to dramatically help mice; the drug removed the plaque that causes the damage, and the mice, who had forgotten how to get through their test mazes, seemed to dramatically improve. But follow-up tests with humans failed; the patients developed brain inflammation.
A cure for Alzheimer’s would be a relief for those enduring immense suffering, Massey said. “Just about everybody has seen someone, a friend or a family member, with Alzheimer’s,” Massey said. “It steals the person’s memory, their personality; they become like a walking clay pot with nothing in it. They don’t recognize family, they don’t recognize their spouse of 50 years.”
The only upside he has ever seen to the disease is that “with some families, it seems to bring them closer. I’ve seen them rally around each other.”
But he’s also seen the worry. People who’ve endured this disease in their family sometimes worry that they’ll develop it in later years, too. But though the disease seems to run in some families, Massey said, it skips some generations. Not everyone gets it.
There are things we can do in life that would help with some of the symptoms. For one thing: learn things. People with more knowledge and more education get Alzheimer’s disease like other people, but they seem to do better. They lose cognitive abilities, but if they start out with more knowledge and more learning than other people, they seem to do better and last longer during the course of the disease.
Think of the brain as a computer, Massey said; the brain is the hardware, education and other acquired knowledge are the software. When we learn more, even during the early onset of the disease, our brain develops more synapsis to solve and study problems.
Help for families
Smith, who spends four or five hours with his wife every day, says no doctor can help you much, once a diagnosis is made. But there are Alzheimer’s associations, with 24/7 help lines, open throughout Kansas, including the central and western Kansas chapter at 347 S. Laura. The 24-hour help line number is 1-800-272-3900; their office number is 316-267-7333.
Because the disease often becomes a disaster for families, the central and western Kansas chapter offers considerable help: there are 40-plus groups for families to get peer support and trade information, executive director Marsha Hills said. Families can apply for grants for respite care and financial reimbursement for some costs. The association also offers education for families about the disease, coping strategies and legal and financial issues, as well as referrals for adult day care, nursing homes and eldercare lawyers.
Smith considers himself lucky: Pat’s mind may be gone, but she is unfailingly pleasant toward him. Many Alzheimer’s victims, facing loved ones trying to help them, turn combative, angry, suspicious, difficult.
Smith years ago became one of the local Alzheimer’s Association’s public speakers. He warns families that the stress on spouses and children can kill otherwise healthy people.
“The only way to survive this situation, I tell them, is…I tell myself that I am a very lucky man, to be important at this stage of life, that I am lucky to have the most important job I will ever have, that I am serving a cause much bigger than myself.”
For those who don’t view it that way, the result can be suffering and death. “Caregivers in this disease are practically an endangered species,” Smith said.
“They wear themselves out with worry, they wring their hands. I tell people: Perception is the root of all stress. I have survived because I believe that I am in charge, right now, and in the next moment of my life, and that I’m going to make of that moment the best I can make of it.”
Pat has no idea who he is.
But he tells a story:
“ One man asked another man: “Does your wife know who you are?”
“No,” the other man replied. “Not for the last two or three years.”
“Then why do you spend so much time with her?”
“My wife does not know who I am,” the other man said. “But I know who she is.”