COLUMBIA — On a warm day in November, Brian Cottle slowly lifted a rock and moved it to a different spot in the yard. He paused to study the pile of stones, picked up another one and set it on the ground.
He had been rearranging rocks like this for four days. It used to be leaves, his wife, Amelia, said. He would pick them up one at a time and move them to a new place.
This obsessive behavior is a symptom of her husband's disease. Four years ago, when he was 52, Brian Cottle was diagnosed with early onset Alzheimer’s disease.
Alzheimer’s disease is a type of dementia, first described a century ago. The disease interferes with a person's memory, thinking and behavior. It can eventually grow in severity and undermines daily tasks.
This is not the normal memory loss associated with old age. The early onset variation of Alzheimer’s disease strikes those who are younger than 65, like Brian. Of the 5.3 million Americans with Alzheimer’s disease, approximately 200,000 have the early onset version, according to the Alzheimer's Association.
It is not completely understood why cases of Alzheimer’s appear in younger adults. Scientists have found rare genes that directly cause Alzheimer’s, and individuals who inherit these genes are more likely to develop the disease at a younger age.
In the film "Still Alice," Julianne Moore won both Golden Globe and Academy awards this year after portraying Alice Howland, a 50-year-old Columbia University linguistics professor who lived with early onset Alzheimer's.
"Who can take us seriously when we are so far from who we once were?" the character asks in the movie. "We become ridiculous, incapable, comic. But this is not who we are. This is our disease."
Symptoms and diagnosis
Amelia Cottle first realized signs of her husband’s memory loss when he was unable to remember the vet’s diagnosis of their ailing dog. She scheduled an appointment with their family physician, Corey Bethmann, who tested her husband using the mini-mental state examination. The exam is a questionnaire that measures cognitive impairment and screens for dementia.
The doctor gave Brian five words and told him to repeat them, then asked him to draw a clock and mark the time. When he could not complete these tasks, Bethmann referred him to neurologist Joel Shenker. Their first visit was in April 2012.
Shenker said when they met, Brian’s biggest problems involved language. Shenker said he first evaluated the different possibilities — brain tumors, medications, sleep apnea. Alzheimer’s was a possibility, but given Brian’s age, it was less likely.
The patient's loss of fluency and his trouble finding the right words suggested a pattern where specific brain areas were being affected. In addition, Shenker took note of his patient's history. What came first? When did it happen? Was it gradual or sudden?
Ultimately, Shenker said, he was fairly certain that Brian had early onset Alzheimer’s.
The first year
Amelia said the first six months after diagnosis were consumed with grieving and absorbing the shock, rather than coping with his symptoms. The one notable adjustment was her husband's decision to voluntarily stop driving. At that point, he was still able to perform the routines of daily living — warming up food and pouring a cup of coffee, for example.
During the second year, Amelia watched changes occur on a faster scale. Her husband was losing his wallet and keys constantly, which frustrated him. By the end of the second year, she began finding items in odd places. The milk would be in the cupboard, or the refrigerator door would be open. He also had difficulties with tasks such as tying his shoes and boots.
His physical health was still intact, however, and he joined a stewardship program in 2013 working at Rock Bridge Memorial State Park for 40 hours a week.
He participated in the program for about six months before winning the 2013 Masterpiece Award for best Missouri state park volunteer. Eventually, in June 2014, the program proved to be too much for him, and he stopped participating.
Today, her husband can no longer dress himself. Amelia must be in the room to pick out his clothes and help put them on. He also forgets where to put his dirty clothes, even though they’ve had the same basket for 30 years.
Sometimes he will go blank at dinnertime, she said, and stare at his bowl until he realizes he is supposed to eat. Or he will stare at his spoon until he remembers how to use it. The hardest change for Amelia is when Brian wakes up in the middle of the night and doesn't know where he is or who she is.
Brian, who worked at KOMU-TV for 30 years, also suffers from aphasia, a communication disorder where he cannot find the "right" words to describe what he is trying to say.
"I stutter when I try to get out what I want to say," he said. "It's really hard, and that's how she helps me."
Other impaired functions are his sight and his hearing. If you were to lay a lined white piece of paper on top of a regular piece of white paper, Amelia said Brian would not be able to distinguish between the two. Red is the last color to go, so Brian’s mug is red, and she lines glasses with red rubber bands so he can see them.
The couple take Brian’s hearing into consideration during their day-to-day activities. In a restaurant, Amelia makes sure that they are sitting in a spot with little noise. In the center of a restaurant with loud conversation or music, she said Brian becomes overwhelmed and shuts down.
"We find what I call 'safe havens,'" Amelia said. "We find our places within our community that we know can accommodate."
There is currently no way to reverse Alzheimer's disease, though researchers continue to test possible treatments and search for a cure.
To treat his symptoms, Brian began taking medication under his doctor's supervision the first year after his diagnosis. His first medication was Exelon, the brand name of rivastigmine, a transdermal patch commonly used to treat dementia. He began using the patch in April 2013 and is now prescribed the highest dose of the drug.
Shenker said the treatment does not prolong life; it helps with cognition and the ability to function. Patients who take medication are better than they would have been without it the following year, he said.
People often claim the medication is not working, the doctor said. What patients have to understand is the medication is not curing the disease, but providing the best possible chance to remain the way they were.
"There's no medicine that makes the dilemma not a dilemma," Shenker said. "There's no pill that treats the fact that dementia involves suffering. So the only response is to be like Brian and Amelia."
In 2014, Amelia resigned from her job to become a full-time caregiver for her husband. One of the ways she manages is to advocate and "agitate" through a support group with other caregivers.
On an afternoon in October, she was asked to moderate a support group discussion about "women as caregivers." About 12 women, all of different ages with family at different stages of Alzheimer's disease, gathered at the Alzheimer's Association office on Bluff Creek Drive in Columbia. Amelia's face lit up as she embraced every visitor with a hug and a warm smile.
At the start of the meeting, she reminded everyone that the association provides a safe space where nothing they share will leave the room. The meeting was filled with laughter and emotion as people exchanged updates on the status of those they cared for, as well as funny stories from daily life.
Amelia stressed to the group the importance of making time to care for oneself. She said she was apprehensive about this at first but has learned that it makes all the difference.
Approximately two-thirds of Alzheimer's caregivers are women. It is estimated that friends and family provided 17.9 billion hours of unpaid care to patients with Alzheimer’s and other diseases of dementia in 2014.
Amelia falls into the category of full-time care partner. She said she focuses on two things in this role: Making time to take care of herself and remaining positive and patient with her husband. Amelia said she naps and reads to make sure she is happy and feeling her best for his sake.
"I don't want to be cranky with him, but I could be," she said. "He never deserves my crankiness, so I have to take care of myself to not be cranky."
In their fourth year after diagnosis, Amelia and her son Chris requested a private meeting with Shenker to assess the situation. She said she chooses to avoid certain topics in front of Brian; though he will forget them, she doesn't want to upset him for even a moment.
The doctor told Amelia and Chris that a point will come when Brian no longer realizes he has the disease. Although Amelia finds that sad, she believes once Brian is no longer aware of his limitations, he will have more peace.
The Cottles have tried to learn as much as they can about the disease, knowing that it cannot be prevented, cured or slowed.
"The unfortunate thing is, it doesn’t matter how much good information you have, the end result is still the same," Amelia said. "It’s a terminal disease. It will kill you. There is no cure."
She said the best advice the Alzheimer’s Association gave her was this: "You choose to live with Alzheimer’s, or you can choose to die."
This advice guides her and her husband as they work to enjoy the time they have together. Brian attends a monthly support group with others who have early-onset Alzheimer’s disease.
Early on, he asked the meeting facilitator, April Bernhardt, if he could help others share their common experiences and work through the issues. Now, he serves as an informal greeter and promotes a healthy attitude among the group.
"People come in newly diagnosed and Brian welcomes them," Amelia said. "That's where he spends his energy. Making sure that people know that you can still laugh. And he makes them laugh."
On an early November afternoon, Bernhardt, Brian and two others met at Tiger Place. Bernhart said they focused on how to best adjust and live with their disease. Although the meeting touched on a number of related topics, including ways to combat memory loss and the importance of care partners, it was filled with laughter, often invoked by Brian’s humor.
"I like to have fun," he said. "It’s one of the best things that I can do for me. It took a big chunk when I got Alzheimer's. It tore me up, and I couldn’t do anything. After a little while, I figured you’re not just going to sit around, … I’m going to just keep going."
In 2014, President Obama signed a $122 million bill increasing the amount for Alzheimer’s research and education. According to the Alzheimer’s Association, these funds will be used to help meet a national goal to prevent and treat Alzheimer’s by 2025.
An ongoing research trial at Washington University in St. Louis is one effort. The Dominantly Inherited Alzheimer Network Trials Unit, or DIAN TU, focuses on the prevention of early onset Alzheimer's among those at risk for developing autosomal dominant Alzheimer’s disease, caused by inheriting certain genetic mutations.
Eric McDade, an assistant professor at Washington University who is involved in the trial, said people who inherit one of the genes are almost 100 percent likely to develop Alzheimer’s disease, and symptoms develop in their 30s, 40s and 50s.
The first stage of the trial tests two drugs that target amyloid beta, a protein that can form plaques blocking signals in the brain and resulting in Alzheimer’s disease. This stage will look at whether lowering the levels of these proteins has an impact on someone's risk.
"Ultimately we want to be able to say we can stop or reverse the risk that they have," McDade said. "But at this point, we are trying to see if we can actually slow down or prevent symptoms from occurring."
Another study that targeted the amyloid beta protein to prevent Alzheimer’s was conducted at MU. Grace Sun, a retired professor in the biochemistry department, led the team that conducted the study.
The team found that green tea extract, along with voluntary exercise, slowed the progression of Alzheimer’s disease in mice. The team has yet to test the effects of the extract on humans, but further studies could advance the treatment and prevention of Alzheimer’s.
There are multiple reasons to be optimistic about Alzheimer’s research, such as the increase of awareness and the resources put toward the field, McDade said. Another positive step, he added, is knowing that we can educate ourselves about known risk factors, exercise and eat appropriately to decrease the likelihood of developing Alzheimer’s.
There is a need to be cautious and realistic because the brain is complex and there is no expectation of a silver bullet to "cure" the disease, but McDade said that is no reason to be pessimistic.
"We are in a position now to do things that were not feasible when you go back 10 to 15 to 20 years," he said. "Our ability to continue to evolve and identify more creative and more effective ways to study the disease and then treat the disease is fantastic."
Living with Alzheimer’s
Because there is no cure, the Cottles adjust their lifestyle to accommodate Brian’s disease and make the most of their situation. They attend a monthly breakfast at Cat’s Kitchen with other couples living with Alzheimer’s. Amelia said that the restaurant is very considerate of the group’s needs and is one of their "safe havens."
Five couples gathered at Cat’s Kitchen on a cold November morning. Janie Bonham, the early-stage care consultant at the Alzheimer’s Association, joined the group. They sat in the back of the restaurant where it was quiet; their waitress knew them all by name and could anticipate their orders.
The Cottles and the couples around them are on a difficult journey, but they insist that they want to make the most of their time together. Amelia said she knows she didn’t win the lottery, but she feels extremely blessed to still have time with her husband.
"You can choose to sit down in a chair and feel sorry for yourself, or you can say I have an unknown amount of time left in my life that I can enjoy," Amelia said.
"I have an unknown path ahead of me, but I am going to continue to live and find the love and joy that I've always had."
Supervising editor is Jeanne Abbott.