Lance Kocherhans wasn’t especially surprised when his children told him they were worried about his memory.
It had never been razor sharp, he said good-naturedly. “I literally do not know the words to any songs, though I know the music to all of them.” And his dad was diagnosed with dementia when he was about 80 and spent his last years in memory care.
Kocherhans’ husband told him he was sometimes substituting a wrong word for a word he really meant or leaving words out. He’s a big fan of early intervention and of being realistic, so he went to see a geriatrician, who gave him a battery of memory and skills tests, with tasks like count backwards from 100 by 7s. “I got to 93 and stopped. Who can even do that anyway?” he said.
His geriatrician sent him for a bigger battery of tests with a psychologist and he was diagnosed with mild cognitive impairment.
That didn’t throw him, either. He started going in every year for testing to see how he was doing. Then two years ago, the doctor ordered a PET scan to see what his brain looked like.
That was a different story.
The day the results of the PET scan came back, he was alone in a hotel room in Montana, on a trip for his job selling medical devices. He looked online for his results and when he saw the words “consistent with Alzheimer’s,” he said that “I remember I kind of froze up, stuck my face in a pillow and screamed. I started to bawl. I was scared to death.”
He still had to call home and let the people he loved most know.
Another scan a short time later confirmed the diagnosis: Alzheimer’s dementia. By then, the now 66-year-old South Jordan man had collected himself, strapped his sense of humor back in place and was ready to fight for time he still has with his family, connection to others and the life that he loves.
That’s the first thing he wants you to know. There’s life after diagnosis.
All in on a club he didn’t want to join
Jim Herlihy, a regional spokesman for the Alzheimer’s Association, will tell you that Kocherhans finds himself in good, if reluctant, company. About 7.4 million people in the U.S., including 38,300 in Utah, live with Alzheimer’s disease.
While there’s no cure, recent years have brought those with Alzheimer’s some reason to hope that had long been missing. Studies have shown some steps people can take proactively and earlier in life that may reduce the risk of Alzheimer’s or slow the disease’s progress. Herlihy said that “about 40% of all cases of Alzheimer’s can be influenced by our behaviors — one way or the other."
And newish medications are beginning to impact the neurocognitive decline, slowing it down when taken early enough, though they don’t reverse what’s already been lost or halt the disease’s progression.
Utah Alzheimer’s Association spokesman Jeremy Cunningham told Deseret News that two recent drugs are making a significant difference in the lives of some people with early-stage disease by slowing down their decline modestly.
Kocherhans knows all of that. So he moved from being diagnosed to starting treatment without hesitation — after he got over a brief period of despondency. He mourned, then chose to pull himself out of the funk.
He loves his family, which includes his spouse, four children and 11 grandchildren. His kids are all nearby, including one who moved back to Utah to be part of whatever time Kocherhans has left.
He’d spent more than 35 years selling medical devices to hospital labs and had planned to retire at the end of last year anyway. When he got the news his condition had advanced to Alzheimer’s, he retired a few months early, determined to chase the things that were important to him, like time with family and treatment, travel and yard work — which he happens to love.
Not running from treatment
One of his first steps was arranging to start taking one of the newest drugs, Leqembi, which is made by Biogen and Eisai. Given by an hour-long infusion, it reduces the amyloid plaques believed to be a hallmark of Alzheimer’s disease. But it’s only given in the early stages, which include mild cognitive impairment when symptoms don’t impact life much and the next phase, mild Alzheimer’s dementia, when symptoms such as trouble keeping track of finances and doing some familiar tasks are beginning to show. The company says when people start getting lost and confused, “Leqembi may no longer be right for you.”
The drug has been shown to push that day back for some people. But while it may buy someone with Alzheimer’s precious time, it won’t stop its progression. People also have to be willing to risk side effects, most often mild but sometimes serious. Kocherhans notes that he gets a little tired right after an infusion, but that’s about it. So he takes a nap.
That’s another thing Lance Kocherhans wants people to know. There’s no point delaying diagnosis of a progressive disease like Alzheimer’s. Maximizing the quality of your time hinges on getting started with the tools that could help. They won’t be available later.
He wasn’t wild about the needle sticks, though, so he had a port put in so that they can plug into that instead of him. One and done.
Treatments are not inexpensive, although a Biogen spokesperson warns against listing any one patient’s out-of-pocket cost. The list price is about $26,500 a year, but it all depends on your insurance coverage, copay assistance and eligibility for other programs that lower cost. What people pay can vary a great deal.
Not done living
Something else Kocherhans wants you to know? Life doesn’t end with diagnosis. He travels a lot with loved ones, and has planned trips in the next few months to Washington, D.C., and Costa Rica.
One of the hardest things, he said, has been seeing what people post in support groups about caring for someone with dementia. Information is power, but he’s learned it can also be really sad. The disease impacts people differently and some people become mean and combative, as some of the posts chronicle. But that’s not everyone, he points out. He knows there’s great variation, because he’s cared for his dad and an in-law and others. They have all been different.
He doesn’t know what personality changes lie in his future and that’s a worry. But he knows that he’s embracing life to its fullest right now.
He says he’s doing all right. He’s active physically, he sleeps well and wakes up rested, and he’s out and about a lot. He thinks there’s a chance Alzheimer’s is something he will die with, rather than of. He’s good with that.
Do what you can and start early
In honor of Alzheimer’s and Brain Health Awareness Month in June, the Alzheimer’s Association is circulating a 10-point list of proactive actions that people can take. The neurocognitive disease is the sixth-leading cause of death in the U.S. and the numbers are expected to get worse. It’s the only leading disease without a clear prevention or cure, killing more Americans annually than breast and colon cancer combined.
The 40% that might be changed somewhat by lifestyle choices matters. Among the habits the association says everyone should develop:
Break a sweat. Get the blood flowing to your brain and body, make your heart pump and build muscles. Plenty of research finds that physical activity could reduce risk of cognitive decline.
Continue to learn. Take a class online or study a language. Learn to play a musical instrument. Stretch and work your brain. The more you work it, the more that brain has to work with if there’s cognitive decline.
Do not smoke. It’s one of the worst things you can do if you want to avoid cognitive decline. If you smoke, quit. And like the other suggestions, it’s never too late to improve your odds.
Keep your blood pressure top number below 135. A World Health Organization study found people with high blood pressure that’s not treated have a 36% higher risk of Alzheimer’s. If your blood pressure is high, consult a health care provider and do something about it.
Avoid head injuries, which can raise the risk of cognitive decline. Wear a seatbelt, use a helmet when playing contact sports or riding a bike and prevent falls. Working on balance is a good idea.
Eat a healthy diet that’s low in fat and high in vegetables and fruits. Some diets, such as the Mediterranean and the Mediterranean-DASH (it stands for dietary approaches to stop hypertension) are believed to reduce risk.
Get good sleep and plenty of it. Insomnia, sleep apnea and other sleep-related problems are believed to harm cognition.
If you have diabetes, bring it under control. While researchers still debate the exact connection between type 2 diabetes and Alzheimer’s, poorly controlled blood sugar is believed to increase the risk of Alzheimer’s.
Use your mind and stretch it. Exercise and stump your brain. The association said to build a piece of furniture, complete a puzzle, be artistic, play games that make you think strategically. The group notes that challenging your mind may have short- and long-term benefits for your brain. It’s not a tricky task. For instance, you can challenge your brain by brushing your teeth with your non-dominant hand and taking different routes when you travel.
Finally, mind your weight and keep it healthy. An analysis of multiple studies shows that obesity between the ages of 35 and 65 can increase dementia risk in later life by about 30%.
It’s good to remember, too, that things that benefit the brain benefit the heart and body. It runs both ways. Do those things and you’ll be healthier overall.
Cunningham adds socializing to the to-do list. “People laugh at that, but not isolating is really, really important,” he said. Withdrawing also happens a lot with dementia.
He also notes that besides treatment advances, there have been diagnostic gains. For instance, a blood test can now bolster the search for the telltale signs of amyloid plaques. That, in conjunction with other tests, provides valuable diagnostic information.
The last thing Kocherhans wants you to know? Being afraid doesn’t help. So do what you can while you can.
