Michael Folio’s diagnosis of Alzheimer’s disease at the age of 56 blindsided the corporate executive and his wife, Cheryl Levin-Folio, of Highland Park. They faced the question: “Is there life after an Alzheimer’s diagnosis?”
It’s a question faced by the more than 5 million Americans with Alzheimer’s, along with their families, according to the National Institute on Aging. That number is expected to grow, with an estimated 7 million people afflicted by the year 2025, and will climb to an estimated 15 million in 2050, according to the Alzheimer’s Association.
The increase in the number of cases is primarily due to people living longer and the baby boomer population aging, explains Dr. Bruno Giordani, associate director of the Michigan Alzheimer’s Disease Center at the University of Michigan. He explains that Alzheimer’s is a kind of dementia, accounting for three-fourths of all dementia cases, and calls it “a sweeping problem affecting the country.”
The disease will have an impact felt far beyond those high numbers. “We should all care about it,” says Melanie Chavin, chief program officer of the Alzheimer’s Association, Greater Illinois Chapter. “It is the sixth-leading cause of death in the U.S.; one in three seniors dies with Alzheimer’s; and the cost to U.S. society in 2016 is estimated to be $236 billion dollars. It is a big deal.”
Signs and Symptoms
Everyone forgets from time to time, but when is it time to worry?
There are 10 warning signs and symptoms of Alzheimer’s, which are described in detail on the Alzheimer’s Association website. It states, “One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information,” which is different than sometimes forgetting names or appointments but remembering them later.
Other signs include losing track of dates and the passage of time, difficulty understanding spatial relationships, and changes in the ability to develop and follow a plan or work with numbers, such as having trouble following a recipe or problems handling the monthly bills that go beyond an occasional error with the checkbook. While it’s common to struggle to find the right word, people with Alzheimer’s may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves.
“We are looking for a change,” says Giordani. “We all have mild changes, but it’s a sign when there’s been a consistent change that is noticeable.”
Don’t Ignore It
When signs become visible, it is important to see a doctor. Some people with memory issues do not seek medical help for a variety of reasons, ranging from denial to the belief that there is no cure and no help available to them.
“Most families that have been touched by dementia wait until it is too late, whether that’s out of love or respect or even shame, but the consequences of waiting can be devastating,” says Maraganore.
Not seeing a doctor is a bad idea for several reasons.
First, it is possible that the symptoms are caused by conditions other than Alzheimer’s, including thyroid disorders, medication side effects, vitamin B12 deficiencies and sleep disorders. Some of those conditions are treatable and possibly reversible, and all of those conditions should be evaluated by a doctor as soon as possible.
“It’s never too late to see a doctor, but the earlier the better,” says Dr. Demetrius Maraganore, medical director of the NorthShore Neurological Institute and chairman of the department of neurology at NorthShore University HealthSystem.
An Alzheimer’s diagnosis sooner rather than later also gives the affected individual and their family a chance to participate in the decision-making about their future, from determining how and where they want to live to what memories they would like to record and preserve.
“It also gives the patient and their loved ones a chance to engage and form meaningful partnerships with healthcare providers,” he says.
A diagnosis also provides those impacted a chance to connect with others in a similar position and to learn about the resources available, notably those through the Alzheimer’s Association.
Alzheimer’s Association provides a wide variety of education and support services, including connecting people with available resources in their community through their Helpline and care navigation services, and advocating for services for individuals with the disease and their families both at the state and federal levels.
“People living with the disease need care and support,” says Chavin. “We are here to help, and are committed to making sure that everyone who is diagnosed with Alzheimer’s or another related dementia and their supporters gets the support they need to navigate this journey.”
Preventing Alzheimer’s Disease
“Alzheimer’s is preventable. The evidence is indisputable,” Maraganore says. “The biggest impediment to [addressing] Alzheimer’s disease today is the mindset that nothing can be done for it.
“What gets my dander up is when I read experts saying there’s no cure for Alzheimer’s. Regardless of your risk factors, you can cut your chance of having Alzheimer’s today by simply making educated decisions about how you live your life,” Maraganore says.
He explains that there are 20 modifiable risk factors and that modification of those factors can delay the onset of the disease and reduce the number of cases.
Modifiable risk factors include diet and exercise. Maraganore says that following a Mediterranean diet and exercising vigorously on a regular basis can reduce the risk for dementia by 60 percent.
Good sleep habits can also reduce one’s risk. “Take the time to sleep, but don’t spend too much time in bed,” says Maraganore, noting that people who sleep less than six hours a night or more than eight hours a night have an increased risk for dementia. He adds that the kind of sleep matters, too, saying, “Make sure your sleep is good quality and that you’re waking up refreshed.”
Hypertension, smoking, excessive alcohol consumption, anxiety and depression all increase the risk for Alzheimer’s and all are preventable or treatable, the experts note.
Staying intellectually engaged is also an important behavior that helps reduce the risk of Alzheimer’s.
While staying mentally active is tremendously important, spending money on expensive computer games and brain training is not something that the physicians felt had a positive impact.
“I’m wary of spending money on things that are already available for free,” Giordani says. “There is no clear data suggesting that the items you pay for are any more effective than the games you can get for free on the AARP or Alzheimer’s Association websites.” He cautions that they lack any social component, which is a negative. Instead of playing games online, host a game night with friends and family for both the intellectual and social benefits.
“Social interactions are hugely important,” notes Giordani, who says that socializing can also reduce stress, which is another factor.
Genetics also play into one’s risk level, but the doctors agree that the risk is particularly modifiable for those with a family history of late-onset Alzheimer’s. “Genetic factors are powerful, but you also have the opportunity to do something about it,” says Maraganore.
Maraganore hopes people will start prioritizing brain-benefitting behaviors. “Just as we have a concept of cardiac health and take an active approach to it, we need to have a similar concept of and approach to brain health,” he says.
Several significant research studies are also taking place and while they are promising, a quick and easy fix is a long way off. “You cannot wait for a pill. You have to figure out what you can do for yourself to reduce your risk and slow the disease. There are many things that everyone can do.”
Slowing the Progress of the Disease and Improving Quality of Life
Following her husband’s diagnosis, Levin-Folio was surprised by the lack of information readily available to those who wanted to focus on living their best possible life with the disease. “There was nothing about preserving the man I love and his quality of life for as long as I can,” she says. “I became relentless about finding a creative program that would keep Michael status quo. Four years later, that’s the program we’re still following.”
She explains that her husband functions at a higher level than expected given his medical tests, and they attribute his success to the creative program she and her husband have follow that includes a combination of outdoor activities and collaborative efforts with friends, family, and Oliver and Baxter, dogs who have been specially trained to be emotional support animals.
“Knowledge is power,” says Levin-Folio, and she’s sharing what she has learned over the past four years in a new book, “The 24-Hour Rule: Living with Alzheimer’s,” that will be available this fall.
She says she and her husband enjoy activities from biking to tennis, art lessons to socializing, and games like Jenga and Bingo, all of which benefit her husband. Not only do they place him in environments in which he can succeed, but the couple can enjoy the pasttimes together. Through it all, the couple has maintained an amazing connection. “Things have changed, but the love story between us is there,” she says.
Levin-Folio stresses the importance of being proactive and open about Alzheimer’s. “Don’t hide from it. Denial isn’t helpful,” she says. “I hope more and more people come out and talk it about it.”
You can join the Alzheimer’s Association in the fight against Alzheimer’s in a variety of ways.
- Walk in the Walk to End Alzheimer’s
- Volunteer with the Alzheimer’s Association
- Participate in a clinical study. There are hundreds of studies that need volunteers. Everyone is needed — those who have been diagnosed, family caregivers, and healthy volunteers. Learn more here.
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