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By Cecilia Chan
Just five short years ago, Diane Scheel was able to drive a car, go to work, cook, ponder crossword puzzles and play golf.
Today, these tasks are out of the question.
“I started to notice in 2011 at some point her memory was starting to slip,” said husband Randy Scheel. “One day, after I came home from work, I said, ‘I need to ask you something. Have you noticed any memory problems?’ She looked at me and started crying. She knew something was wrong.”
Ms. Scheel, 61, was diagnosed with early-onset Alzheimer’s disease in July 2012. She is one of the estimated 5.5 million Americans, including 130,000 in Arizona, living with the mind-robbing disease that is expected to grow in number as baby boomers increasingly age, according to the Alzheimer’s Association.
Age is a known risk factor for the disease with one in 10 people age 65 and older (10 percent) having it, according to the association.By 2025, Alzheimer’s is anticipated to jump by 44 percent in the country, hitting the western and southeastern states the hardest.
The Centers for Disease Control and Prevention ranked Arizona 12th in the country for Alzheimer’s deaths in 2015 and Arizona Department of Health Services reported 2,000 people in the state died from the disease in 2016.There is no cure or drug to slow down the progressive disease, which is the sixth leading cause of death, fifth-leading among those 65 and older, in the United States, the Alzheimer’s Association reports. But there is some hope for the Scheels.
Ms. Scheel is participating in a clinical trial underway at Banner Alzheimer’s Institute and at multiple centers across the country.
For the past two months, Ms. Scheel takes a pill once a day along with her standard Alzheimer’s medications to manage the symptoms, donepezil and Namenda.
“The goal is to make those two medications work better to improve memory and day-to-day functionality,” said Dr. William Burke, who oversees the study at Banner Alzheimer’s Institute in Phoenix. “We are not talking about a cure.”
The study is in phase two and is expected to last six months, the doctor said. Phase one involved giving the investigational drug to a group of healthy volunteers to establish what doses can be safety given and identify any possible side effects, he added.
The research is essential given no new drug has been approved for Alzheimer’s in more than 14 years, according to Dr. Zamrini, director of the BAI Memory Center At Banner Sun Health Research Institute in Sun City.
The Sun City location has no volunteers as of the end of August because no one had passed the screening phase.He said the SUVN502 drug indirectly stimulates the production of acetylcholine, a vital chemical neurotransmitter in the brain that is essential for processing memory and learning. The experimental drug offers a new mechanism that may enhance the effectiveness of drugs like Aricept when production of acetylcholine in the brain is insufficient for Aricept to work, he added.
The race to find a cure or slow the progression of the disease is not only important because of the devastation is promises to bring as the number of older people doubles in the future, growing to 70 million by 2030, but the impact it has on the pocketbook.According to the Alzheimer’s Association, the cost of caring for those with Alzheimer’s and other dementias is estimated to total $259 billion this year and as high as $1.1 trillion by 2050.
Since Alzheimer’s was first identified in 1901, huge medical advances have been made, according to Dr. Marwan Sabbagh, director of the Alzheimer’s and Memory Disorders Division at Barrow Neurological Institute in Phoenix.Advances include innovative ways to diagnose, detect and attack the disease as well as research studies that target the changes in the brain before the onset of symptoms, he said, adding Alzheimer’s is the only one in the top 25 diseases that has been steadily growing.
“We can now diagnose Alzheimer’s disease in individuals with 90 percent accuracy,” Dr. Sabbagh said. “There are groundbreaking treatments that are being developed that, if successful and approved, could be available as early as 2018. These treatments could offer real meaningful progress in slowing down this disease.”
The National Institutes of Health in a budget report this year noted recent advances that include helping map the brain’s innermost connections and the molecular fabric of Alzheimer’s and detecting the disease progression through neuroimaging and discovery of novel biomarkers.
The U.S. Department of Health and Human Services set a goal of developing an effective prevention and treatment of Alzheimer’s and related dimentias by 2025. Dr. Burke, however, is unsure that deadline will be met. Mr. Scheel has not seen any changes so far with his wife on SUVN502 but they do not know if she is taking the placebo or the experimental drug.This is the second clinical trial, Ms. Scheel has participated in. The first one lasted for three and a half years before the drug company pulled the plug because it was not seeing the results it wanted, according to Mr. Scheel.
For now, the disease is progressing slowly for Ms. Scheel, who is in the early middle stage of the disease, according to her husband. Ms. Scheel is part of the 5 percent of people with Alzheimer’s disease who have early-onset, according to Mayo Clinic. Although it is unknown what causes early on-set Alzheimer’s, some cases ares due to genetics. Mr. Scheel said they could not find any relatives in Ms. Scheel’s family tree with the disease. So far, it is Ms. Scheel’s short-term memory that is impacted, but as the disease progresses, she will lose her long-term memory.
“We know there is a wide variation in the window of Alzheimer’s in how it progresses,” said Mr. Scheel, who educates himself on the disease and attends caregiver classes. “In some it’s quite rapid.” Ms. Scheel stopped driving three years ago and gave up her 30-year career as a dental hygienist a year and a half after her diagnosis. Her boss helped her remain on the job she loved for as long as possible until she started forgetting things such as inputing patient information and forgetting parts of a procedure.
Ms. Scheel describes a typical day for them.
“Usually we get up and get ready for the day,” she said. “We have breakfast, he is a really good cook and we figure out what to do for later.”
Her biggest challenge is her inability to organize. What others take for granted such as following a recipe is impossible for her.
“If you were to give her a recipe for cherry pie today and everything was written, it would be really difficult for her to pull it off,” Mr. Scheel said. “There’s something in the subsequential way that does not click. She might get to steps one, two and three and then stop because she forgets where she is.“She is pretty much dependent on me for most every day-to-day thing. It’s fairly difficult for her to be by herself.”
The two would have been married 42 years come October. They both attended the same Michigan high school and began dating after graduation. Together they have two adult daughters and three grandchildren.The disease has forced other changes for the couple, who moved to Arizona in 1980. They sold their cabin in Pinetop and home in Phoenix and now live in an apartment, which is easier for Ms. Scheel to become familiar with her surroundings. Apartment dwelling also enables the couple to lock up the place and leave for a weekend trip without worrying about yard work or other maintenance issues.
Mr. Scheel, 62, took early retirement this year partly to care for his wife.
“I felt the need to have time with her while she is able to do things like travel,” said Mr. Scheel, who noted trips will become traumatic for her later on where she would become stressed in a strange place, frustrated with being unable to find things and become mentally fatigued by the bombardment of her new surroundings.A recent Las Vegas trip taxed Ms. Scheel who had to learn how to turn on the light switches and where door lock was located.
Ms. Scheel, who once earned As through high school and college now have difficulty writing and even spelling her own name.Despite the disease, the former high school cheerleader and homecoming queen with an outgoing personality has never taken a why-me attitude, Mr. Scheel said.
Instead, “it’s always,’ what can I do to help,’” he said. The two are involved in fundraising for the disease and giving media interviews whenever requested to help further awareness of Alzheimer’s.“I don’t want my kids to get it,” Ms. Scheel said. “I want them to get a cure for it.”His wife’s sense of humor remains intact with the couple laughing and joking about the disease, he said. And her mood has not altered much either, except for moments when he sees her frustration over not being able to do something but she gets over it quickly.
“God only gives you what you can handle,”Ms. Scheel said. “Faith is a big part and family. It’s wonderful my life. I have the best husband in the world, the best grandkids and the best kids.”Mr. Scheel said he has learned to be more patient in dealing with his wife’s disease, trying not to get angry by having to repeat himself when she asks the same question over and over again.
“What is frustrating is you can say something to her and literally in seconds she will forget,” he said. “I kind of take a deep breath and not say, ‘I just told you that.’”The Scheels are practical in dealing with Alzheimer’s. They know the disease will progress and inevitability long-term care is in order.“We will see a continued decline,” Mr. Scheel said. “If we are able to sit here five years from now and have a conversation with you, we would be thrilled.”
If phase two of the study is successful, the study advances to stage three, where the drug is given to a larger group of people with Alzheimer’s.
“To get the drug approved we have to have two positive trials in phase three,” Dr. Burke said.If phase three results are good it would probably be five years out before the drug hits the market, he said.
Banner Alzheimer’s Institute, which is world renown for its prevention trials, also has a series of trials aimed at people who have a genetic risk of developing Alzheimer’s.
“We are taking people without any memory problems but at a genetic risk for the disease and enrolling them in studies,” Dr. Burke said. “They are given medications with the goal of preventing the disease from occurring. One of our mission statements is to end Alzheimer’s without losing another generation and I think these preventional trials are the best bets in terms of eventually finding a cure for the disease.”
Overall, the institute has 50-plus drugs in the late phases of treatment, according to Dr. Burke.
“I would like to be hopeful one will make a significant impact,” he said. “ There is a tremendous amount of research going on right now.”
The doctor sees the focus shifting to earlier stages of the disease when people have no memory problem yet or have mild memory lost as studies show people seem to do best when they are in the earlier course of the illness. It is easier to prevent the disease than to heal the brain once it has become damaged, Dr. Burke noted.
“We really think the future is in prevention, stop the disease in its track,” he said. “If we can slow down, put off the onset of the disease by five years, it would cut the total number of cases by 50 percent. It’s not necessary to hit a home run if we can hit a single or a double.”
Although Dr. Sabbagh is hopeful in making medical strides, he has concerns.
“To see a future without Alzheimer’s disease, the medical and research communities need engagement and participation from those who are affected by or at risk for the illness,” he said. “Thus, waiting for others to participate delays advances for everyone.”
Interestingly, a national survey of 1,000 baby boomers finds they are clearly not ready emotionally, physically or financially to deal with Alzheimer’s disease in their own future, he said. More than 90 percent of survey respondents said they would either be unprepared or find life ‘not worth living’ if diagnosed with the illness,” he said.
And 80 percent of respondents said their savings would not be sufficient to cover the cost of care while 84 percent feel more should be done to prioritize treatment and research to fight the debilitating disease, he added.
“Surrounding the illness is the sense of futility widely held by caregivers, patients and practitioners alike,” he said. “There is a collective sense that nothing can be done once you’re diagnosed with the condition. As a geriatric neurologist who has dedicated my life to taking care of people with Alzheimer’s disease and other forms of dementia, I can say that medical science has advanced a lot more than most people are aware and that there is hope.”
To reach reporter Cecilia Chan, email email@example.com