The losses of Alzheimer’s disease mount for patients and their families
Lynn Roberts first noticed her mother’s memory issues in 2007. At 70 years old, her mother still had her quick wit and independence and could fully care for her husband, who had Parkinson’s disease.
But her memory was starting to wane. While driving, her mother would forget directions, missing turns while going to the grocery store. She’d forget her husband’s doctor appointments. Soon, she couldn’t remember where she lived.
Within a year, it was clear that Roberts, who asked that her name be changed for privacy, couldn’t let her mother drive anymore. She got creative and hid her mother’s keys. “She thought she misplaced them but couldn’t remember where they were,” Roberts says. Roberts also disconnected the battery on the Camry for good measure, marking her mother’s first big loss of independence.
“That was her first major moment when we knew this was a big deal,” Roberts says. “I think we knew it was only going to get worse.”
Aging and Alzheimer’s
Loss of memory is progressive in Alzheimer’s disease — a degenerative malady marked by brain cell death and brain tissue loss, significantly affecting cognitive function. Alzheimer’s disease is the most common form of dementia: a continuous decline in thinking, memory and behavioral skills that disrupts a person’s ability to live independently.
Modern medicine has enabled people to live longer than ever before, but with longer life spans comes an increased risk for diseases, including Alzheimer’s disease.
“Age is the biggest risk factor for Alzheimer’s disease,” says Sandra Weintraub, PhD, a neuropsychologist with Northwestern Medicine and the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern University Feinberg School of Medicine.
Alzheimer’s disease develops largely in people 65 and older. Of the 5.8 million Americans who have Alzheimer’s, only about 200,000 are under age 65, according to the Alzheimer’s Association. And because the population is aging, the total number of people living with the disease is expected to rise to nearly 14 million by 2050.
It’s a frightening condition that in its later stages effectively scrapes away decades of memories and learned motor functions. In terminal stages, individuals cannot eat on their own and eventually lose basic functions, such as breathing.
Those factors make Alzheimer’s the sixth leading cause of death in the United States, killing more people than breast and prostate cancer combined, according to the Alzheimer’s Association.
Over the past 12 years, Roberts has seen her mother lose a half-century of memories, as well as the ability to eat and use the bathroom on her own.
“She stopped calling me her daughter and started calling me her sister,” Roberts says. “Eventually, she was calling me her mom.”
A growing health crisis
Roberts’ mother is a victim of an unprecedented health crisis facing the aging Baby Boomer generation.
“We’re going to see an absolute increase in the number of people with dementia in the next five years and next 15 years,” says Raj C. Shah, MD, a geriatrician at Rush University Medical Center.
In a healthy brain, all living functions such as thoughts, movements, memories and feelings are the result of signals passed through nerve cells, like a highway of information. In an Alzheimer’s brain, these highways become blocked, damaged and slowly eliminated. This destruction begins in the region of the brain that controls memory, called the hippocampus, and gradually spreads to other areas, deteriorating basic functions we take for granted.
There is no scientific consensus as to what causes the cell death and tissue loss typical of Alzheimer’s disease, but two irregular proteins called tau and beta-amyloid are the prime suspects, Weintraub says.
“As people hit 65 and older, the brain makes more and more of these [proteins]. Some people don’t make a lot of these, so it doesn’t kill their brain cells,” Weintraub says. As the proteins build up, they start interfering with normal brain functions.
The struggle for treatment
In the early stages of the disease, Roberts’ mother was prescribed drug treatments in an attempt to slow progression of the disease, but the drugs had mixed success. One drug, Vayacog, worked some days and not others, Roberts says. “It seemed like it was helping, but she was having episodes where it wouldn’t work at all,” she says. “It was very inconsistent.”
Doctors typically turn to the medications Exelon, Razadyne, Aricept and Namenda to lessen or stabilize symptoms for a limited time, although the drugs don’t stop the disease from progressing, says Hadi Finerty, a senior manager at the Illinois chapter of the Alzheimer’s Association.
These medications affect some chemicals involved in carrying messages to the brain’s nerve cells. But, as in the case of Roberts’ mother, the drugs’ side effects can be more dangerous than the disease they are trying to treat.
“Doctors tried my mom on Aricept and Namenda,” Roberts recalls. “But these made her short of breath and put her in heart failure.”
Even if these drugs do work, they can’t cure Alzheimer’s disease. All they can do is help lessen some of the symptoms of memory loss and confusion.
“This is a complex interaction of genetics, lifestyle and environmental exposures over many, many years,” Shah says. “I think the idea of us discovering a complete cure is far away. It’s still very much a work in progress.”
Like any major public health crisis, there are no quick fixes or easy solutions. Alzheimer’s disease is no different.
As simple as it may sound, the best defense against developing Alzheimer’s disease might be living a healthy and active lifestyle, with proper diet and exercise.
Medical experts know that changes in the brain may occur many years before the first symptoms of Alzheimer’s disease appear. These early brain changes could point to a possible window of opportunity to prevent or delay memory loss.
“Anything you do that’s good for your heart is good for your brain,” Weintraub says. “We always tell people they should try to treat whatever conditions they have, such as depression or sleep disorders.” This goes a long way toward keeping the brain healthy for the future.
Solid evidence is starting to accumulate that shows lifestyle interventions can help prevent or delay Alzheimer’s symptoms.
Weintraub and Shah point to a key Finnish study called the FINGER study, published in the medical journal The Lancet in 2015. The randomly controlled study showed that people who exercise, socialize and keep mentally active — compared to people who don’t — show less likelihood of cognitive decline with aging.
Researchers at Rush are helping to run the U.S. POINTER study, which is similarly testing to see if lifestyle changes can protect against memory loss in Americans.
“These studies show that we can delay these symptoms,” Shah says.
“A better diet, better nutrition, exercise, social activity, a strong purpose in life — these may all have benefits in reducing the risk of developing the disease.”
Socialization is especially important for good health. “A lot of older people get separated from society, become lonely and stay at home,” Weintraub says. “And this speeds up the degenerative process.”
To help people living with Alzheimer’s disease keep active and feel supported, organizations such as Dementia Friendly Illinois connect them with trained advocates in their communities. Through the Dementia Friends USA program, people visit those living with Alzheimer’s disease and dementia and also educate the community.
“It’s easy for people living with Alzheimer’s to feel very alone and afraid,” says Shah, who partners with Dementia Friendly Illinois. “This is a growing organization with chapters [across the country] making a real difference in people’s lives.”
Confronting the notion that you or a loved one has the disease can be a challenging part of the process.
“Nobody wants to think about having Alzheimer’s disease,” Weintraub says. “It’s easy to put off the planning required for the long run, especially in the earliest stages. It’s important to just have general awareness of it at a time in your life when you are capable of making decisions and can play a role in planning.”
This starts with a neuropsychological evaluation. Weintraub stresses the importance of having a baseline exam around age 50 to use as a comparison tool for any cognitive changes. The exam tests short-term memory, spatial awareness and a variety of other cognitive functions.
When Roberts noticed her mother’s initial memory problems, she brought her for an exam, but it was too late to be very useful. Doctors affirmed Roberts’ mother had memory problems, but with no baseline, they were unable to determine just how much her cognitive functions had declined.
Alzheimer’s disease progresses differently for everyone, but — without exception — it gets worse as people age. “There can be a huge change from one year to the next. It’s important to start the conversation early and be able to recognize the changes,” Weintraub says.
Roberts says it’s been devastating to see her mother deteriorate over 12 years, from losing her ability to drive to failing to comb her own hair. Nonetheless, Roberts’ faith and family have kept her going.
“It’s important to have patience and to show love and compassion,” she says, “because you never know if it will be you someday.”
Infographic by Andrea Fowler Design. Originally published in the Spring/Summer 2020 issue.
Kevin Sterne is the author of I’ve Done Worse (Long Day Press) and editor in chief of Funny Looking Dog Quarterly. He loves running and trees.