Fight Alzheimer’s disease through the ‘Walk to End Alzheimer’s’
Aug 24, 2018 13h02
By Jana Klopsch
Participants at the 2017 “Walk to End Alzheimer’s” in Salt Lake City. (Courtesy of the Alzheimer’s Association’s Utah chapter)
By Lawrence Linford | [email protected]
“Can I tell you a joke? Why do we lose our memory?” asks Karolyn Avery. “So we can die with a clear conscience.” Bubbly, charming and the mother of three, Avery was diagnosed three and a half years ago with early-stage Alzheimer’s disease shortly before her 65th birthday.
“I thought I was doing a good job of hiding it,” said Avery of her early memory lapses. “I would write little notes to myself as reminders. I remember at work I’d see someone at the end of the hall and I’d walk down to tell them something, but then I couldn’t remember their name.”
Eventually Avery’s boss told her some coworkers had concerns about her memory and urged her to take time off to find out what was wrong. It was then Avery was diagnosed.
Alzheimer’s is a brain disease that causes a slow decline in memory and cognition. As it advances it develops into dementia: memory loss and/or other forms of mental decline so severe it interferes with daily life. Alzheimer’s is the most common form of dementia afflicting 60 to 80 percent of sufferers.
The Alzheimer’s Association’s Utah Chapter is organizing the “Walk to End Alzheimer’s,” on Sept. 15 at the Utah State Capitol to raise awareness and funds for care and research. The Utah Chapter will also organize walks throughout the state over the next few months including in Park City on Sept. 8 and South Jordan on Sept. 22.
While the risk of developing Alzheimer’s increases as people age particularly after 65, “it’s not a normal part of aging,” said Kate Nederostek, program director at the Alzheimer’s Association’s Utah Chapter, “and there are ways to reduce your risk of developing the disease.”
There is no cure for Alzheimer’s yet and no drugs that slow or stop the disease which is eventually fatal. However, research for a cure and better treatments is ongoing and the disease affects everyone differently: people can live from four to 20 years after diagnosis.
A concern for everyone
“Everybody needs to be concerned about Alzheimer’s,” said Nederostek. “It’s the most costly disease in our country and it may in the future bankrupt our Medicare and Medicaid systems that everyone’s tax dollars are paying for.”
The trends in Alzheimer’s are alarming. From 2000 to 2015 Alzheimer’s deaths increased 123 percent and Alzheimer’s is now the sixth leading cause of death in the nation. While it’s estimated that 5.7 million in the U.S. have Alzheimer’s, that number is projected to reach 14 million by 2050.
An estimated $277 billion will be spent on care for Alzheimer’s and other dementias this year — nearly double the annual economic output of Utah — with annual expenses projected to be as high as $1.1 trillion by 2050.
In Utah, 31,000 people suffer from Alzheimer’s and that population is expected to rise to 42,000 — an increase of 36 percent, one of the fastest rates in the nation — by 2025.
Early signs and symptoms
“I was so nervous about what it could be that I made a list of all the possibilities,” said Avery before her appointment with her doctor about her memory problems, “and that really calmed me.”
One of the most common signs of early Alzheimer’s is forgetting newly learned information. Other signs are forgetting important dates and events, repeating oneself and increasingly relying on memory aids like notes (visit www.alz.org for a longer list and other valuable information about Alzheimer’s and other dementias).
“If people notice any signs of Alzheimer’s we definitely recommend they see their primary care doctor,” said Nederostek. “People sometimes assume that memory loss is a normal part of aging, but that’s not necessarily so and they should definitely get it checked out.”
Memory problems can also be caused by other potentially easily treatable factors including medications, vitamin deficiencies or other issues not related to Alzheimer’s or other dementias.
Studies show that early and accurate diagnoses of Alzheimer’s or other dementias result in better outcomes for patients.
Several caregivers and Jeremy Cunningham, public policy director at the Alzheimer’s Association’s Utah chapter, emphasized a major advantage of early diagnosis: early in the disease one can still make important decisions about their future including end-of-life decisions and other legal decisions. Another advantage is being able to record priceless memories before the disease takes that ability away.
“I told myself whatever the doctor tells me to do I’ll do it. If he tells me to stand on my head I’ll stand on my head,” said Avery with a laugh. Avery’s doctor recommended an exercise regimen.
Some studies show exercise and cognitive stimulation provide some cognitive benefit for people suffering with Alzheimer’s dementia (for more information visit the “Alzheimer’s Association 2018 Facts and Figures” publication on www.alz.org).
“There are a few medications to treat the cognitive symptoms of the disease,” said Nederostek, “that might help with the confusion, disorientation, mood and personality changes. We currently don’t have a way to prevent, slow or cure the disease.”
Reducing your risk of developing Alzheimer’s
“We have an education campaign called ‘10 ways to love your brain,’” said Nederostek, “which are ways to reduce your risk of cognitive decline. That includes a heart healthy diet, exercise, watching your cardiovascular risk factors like high blood pressure and cholesterol, stimulating your brain and staying socially active,” said Nederostek (for a full list visit www.alz.org).
Nederostek said those are ways to reduce your risk, but added, “We don’t have that magic formula that will prevent the disease. But with research we’re getting closer and closer.”
“You’ve got to go into it with an open mind,” said Mauri Ulmer. Ulmer has been taking care of her mother suffering with advanced dementia for several years. “Having a support group is so important, whether it’s family or not, both are helpful.”
“Unpaid family caregivers of people with dementia are the largest workforce in America,” said Nederostek. As Alzheimer’s worsens the person suffering requires more and more help while becoming less communicative. This can take an increasing strain on the caregivers, very often family, helping to support their loved one.
Ron Rice took care of his father Jim, a former army man and salesman, who suffered from dementia for the last several years. Jim Rice passed away recently at age 87.
“You have to get creative,” said Rice. “I tried to find things that he enjoyed and played on them. The biggest mistake people make is they fail to accept that their loved one has changed. He or she is a different person now, and you have to find ways to adapt.”
Rice talked about the importance of music and memory and said a woman at his father’s memory care facility had stopped speaking but would sing when the right music was played.
“As aggravating and frustrating as it can be to care for someone with dementia, they’re doing their best,” said Ulmer. “It must be so frightening to go through what they’re going through.”
A powerful resource and Walk details
The Alzheimer’s Association Utah chapter is an invaluable source of information and support for Utahns struggling with Alzheimer’s, other dementias and the people who love and care for them. The Salt Lake City office is at 855 E. 4800 South, Suite 100 and can be reached at 801-265-1944. The Association’s help line is available every day is 800-272-3900.
The “Walk to End Alzheimer’s” will be on Sept. 15 at the Utah State Capitol — South Lawn, 350 N. State St., 120 State Capitol in Salt Lake City. Registration begins at 9 a.m., the ceremony at 10 a.m. and the walk (2 miles) starts at 10:30 a.m. There is no fee to register, but a donation is requested. You can register online or at the walk. To register online, volunteer and/or start a team visit act.alz.org or contact Laura Wall at 801-641-7148 or [email protected]