Knowing when it's Alzheimer's, and when it's not
Sunday, July 24, 2016 6:46pm
The trouble started in 2010 when Dennis Krupinski was just 53. A longtime employee in Walt Disney World's maintenance department, he started losing things and forgetting about tasks. He seemed distracted, confused.
The man who had received so many awards over the years for top-notch performance at work was suddenly getting reprimanded.
"He was getting in trouble for forgetting, misplacing things, taking too long to do things, acting completely out of character," recalls Terri, his 56-year-old wife.
When he was put in charge of a big, important project at work, it quickly became obvious that Dennis couldn't handle the job. He finally agreed to see a doctor.
At first, the doctor thought it could be high blood pressure, work-related stress or possibly allergies. But treatment for those problems didn't seem to help.
The doctor ordered psychological testing, which suggested something much more serious and not as easily fixed. Terri took Dennis to the University of Florida's Shands Hospital in Gainesville for a second opinion and more tests.
The ultimate diagnosis: early-onset Alzheimer's disease. Dennis was now 55 and forced into early retirement.
"You don't want to believe it at first. He was so young," said Terri, who has been married to Dennis, now 58, for 29 years. They live in Winter Haven.
"It was such a surprise," she said. "I might have expected it at 80, but not at 55. I kept hoping that the first diagnosis was wrong."
The Krupinskis might have gotten a definitive diagnosis sooner if a special brain scan was more affordable or covered by Medicare or other health insurance plans. The test uses a radioactive tracer and a PET (positron emission tomography) scan to check the brain for deposits of beta-amyloid, the protein pieces that stick together and are a key feature of Alzheimer's disease.
But the test costs more than $4,000 at most medical centers, putting it out of reach for many of those who need it. Some are able to get the scan as part of a clinical trial at no or reduced cost. But not everyone qualifies for clinical trials.
To receive a diagnosis of Alzheimer's disease, patients must have deposits of abnormal beta-amyloid protein in the brain and symptoms of cognitive decline — for example, problems with memory, thinking or reasoning, or so much trouble with daily activities that they can't live independently.
The amyloid deposits can appear 10 to 15 years before symptoms surface.
"If you don't have those abnormal protein deposits, then the likelihood of having or developing Alzheimer's disease in the next five to 10 years is very, very low," said Dr. Andrew Stephens, chief medical officer at Piramal Imaging, the maker of one of the FDA-approved tracers used in brain amyloid detection. If a patient has clinical symptoms but no amyloid deposits, doctors will look for other causes of dementia.
According to the Alzheimer's Association, Alzheimer's disease accounts for 60 to 80 percent of dementia. But not everyone with memory problems or trouble with routine tasks has Alzheimer's. Many of the most common symptoms — mental confusion, forgetting names and recent events, difficulty communicating, using poor judgment, and personality changes — can also be caused by medications, vitamin deficiency, dehydration, depression, alcohol abuse, diabetes, Parkinson's disease, strokes and other health conditions.
The Alzheimer's Association website lists more than a dozen of the most common kinds and causes of dementia that aren't Alzheimer's related. Some of them are treatable and reversible, and others are not.
One type of dementia that can't be reversed, known as FTD, short for frontotemporal dementia, accounts for about 10 percent of all dementia and is sometimes mistaken for Alzheimer's.
In 2010, Diana Winoker of Tampa was diagnosed with FTD. Winoker, 63, says she was lucky to have had a brain scan early on and to be in the care of doctors locally who knew exactly what to look for to rule out Alzheimer's and other forms of dementia.
"Some people call it baby boomers dementia because the average age of onset is 55," said Winoker, who was forced to leave her more than 30-year career as an executive in finance and money management because of the diagnosis.
"It affects decisionmaking, social behavior, language," she said. "Figuring out math problems became very difficult for me. Memory can also be affected, but that's usually later."
In evaluating people for dementia, doctors will often talk with a spouse, an adult child, a close family member or friend — someone who has observed the person over time and who would notice behavior changes.
"We do that interview separately, so they can be entirely honest. It's vital to get that information," said Dr. Amanda Smith, medical director of the USF Health Byrd Alzheimer's Institute. "We are looking for changes that include more than memory problems, more than difficulty in finding words. There must be a change in the way the person functions. That's key."
Those changes might include: difficulty completing tasks or seeing them through from start to finish, or an inability to figure out the correct order to get something done, such as putting on socks first, then shoes, or knowing what's right and wrong, such as exhibiting inappropriate behavior in public.
"It has to be a change from how the person used to function and the changes interfere with daily living," Smith said. "We see people who clearly exhibit short-term memory loss but are still able to pay their bills, go shopping, dress themselves. They may be on the road to dementia, but it's still early."
That's where a PET brain scan with an amyloid detection tracer could be most helpful. "It has already revolutionized the diagnosis of Alzheimer's, but not many families can afford it," said Smith, who is recruiting patients for a clinical trial aimed at increasing access to the scans.
The so-called IDEAS trial, short for Imaging Dementia — Evidence for Amyloid Scanning, will enroll more than 18,000 Medicare beneficiaries age 65 and older at roughly 200 sites nationwide. Those who qualify for the study will be reimbursed for the PET scan as part of their Medicare coverage.
The purpose of the trial, led by the Alzheimer's Association, is to find out if providing greater access to the scans reduces hospital admissions and emergency room visits, and whether the scans have a cost-effective impact on patient care.
"I think there will be data showing (the scans are) useful and that they will end up saving money, getting folks on treatment earlier, preserving independent function, and we'll pay less for long-term care," Smith said.
The scans also may have an added benefit. By contributing to earlier diagnosis of Alzheimer's, they may lead to the development of new treatments for early-stage disease.
"People at the early stage of diagnosis are the best ones to enroll in drug trials," said Dr. Diana Pollock, medical director of the Madonna Ptak Alzheimer's Research Center at the Morton Plant Mease Neuroscience Institute. Pollock is also involved with recruiting patients for the IDEAS trial.
"In these early-stage patients, we can see which drugs stop the formation of beta-amyloid and slow or stop the progression of Alzheimer's," she said. "Research can only move forward if we get more of these early-stage patients into trials."
Dennis Krupinski eventually had a PET amyloid detection brain scan as part of a clinical trial, and it revealed some beta-amyloid deposits. Because he was diagnosed with early-stage disease, he was able to join another trial testing a drug that may stop amyloid deposits from forming and prevent the disease from worsening.
His wife Terri thinks it's helping. Dennis can still manage his daily personal care and continues working on his wildlife photography hobby. But he no longer drives.
"Cooking isn't a good idea, either, and I worry about his safety using certain tools and equipment," said Terri, who believes the earlier you get a diagnosis, the better.
"I've hired people to take care of lawn and yard work," she said. "We knew something wasn't right, and getting a diagnosis allowed us to get treatment that seems to be slowing things down. His mother had (Alzheimer's), too, and she was completely nonfunctioning before the family did something."
Contact Irene Maher at firstname.lastname@example.org.
When — and when not — to be concerned about Alzheimer's
Don't fret over every memory lapse. Some of that is normal with aging, a busy, constantly changing schedule or stress. But if the problem worsens over time, or doesn't seem to get better even when things calm down, it's probably time to talk to your doctor. Here are some signs that will help distinguish between what's normal and what's not:
• Forgetting where you put the car keys is normal. Putting them in an unusual place such as the refrigerator is not.
• Forgetting why you walked into a room may be normal. Not recognizing a room or place that should be familiar, or getting lost in your own neighborhood, is not.
• Forgetting a name is normal, especially if you remember it a few moments later. Forgetting that you know a person who should be familiar is not.
• Making a bad decision is normal. But to suddenly use poor judgment when making important decisions or when risk-taking is involved is not.
• Occasionally being unable to find the right word is normal. But having difficulty putting thoughts together to communicate, or having new difficulty writing, is not.
• Being up one day and down the next may be normal. But having dramatic mood swings or significant changes in personality and behavior is not.
Pay attention to these symptoms, especially if new:
• Trouble problem solving.
• Difficulty completing familiar tasks.
• Problems with understanding visual images, spatial relationships.
• Trouble retracing your steps.
• Withdrawal from social, work activities.
• Losing track of the date or season.
• When any of the above disrupt your daily home or work life.
Sources: Dr. Elizabeth Landsverk, founder of ElderConsult Geriatric Medicine; the Alzheimer's Association's 10 Warning Signs of Alzheimer's Disease
Clinical trials and other help
For more information on the IDEAS clinical trial, visit ideas-study.org or call (215) 574-3156. A related link lists all the active study sites by state: ideas-study.org/list-of-active-sites.
To get information on dementia and Alzheimer's disease or to locate a clinical trial, visit alz.org or call the 24-hour helpline toll-free at 1-800-272-3900.
On the road
Last month, the USF Health Byrd Alzheimer's Institute unveiled its new mobile Memory Research Suite, which will help increase participation in Alzheimer's disease clinical trials. Dr. Amanda Smith, medical director at the USF Health Byrd Alzheimer's Institute, said: "Up to this point, we are limited to only being able to enroll people who are willing to travel to our site. By bringing our site to them, we hope to increase enrollment in trials, increase diversity in research and shorten the time it takes to complete the studies. The ultimate goal is to decrease the length of time it takes to get new treatments on the market, while in the meantime providing opportunities for people to participate in research who otherwise might not be willing or able to do so."