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Alzheimers disease affects one in three seniors, according to the Alzheimers Association. But that doesnt account for all those impacted by the disease. Cronkite News
Shehad researched Alzheimers disease and its effects on the brain for years, but it wasnt until her own mothers memory began to slip that Dr. Eva Feldman, a University of Michigan neurologist,truly grasped how devastating the disease is.
Margherita Feldmanwas 88 when she movedin June 2017 to the memory care unit of an assisted living home in Saline. And although her memory loss wasnt as acute as some of the other residents, itswhen the cruelty ofthe disease nowthe sixth-leading cause of death in the United States and the scope of the Americas Alzheimers crisis became clear to her daughter.
I learned more about dementia and Alzheimers disease spending lots of hours in that memory care unit than I did as a long-standing, practicing neurologist, said Dr. Feldman, who is the director of the University of Michigans Program for Neurology Research & Discovery.The people in the memory care unit, some were very violent. Some were very passive. Some were very young with really severe memory loss with early-onset Alzheimers. You could see the whole myriad of presentations and you could understand what an enormously difficult disease that it is for the patient, but also for the families.
Dr. Eva Feldman and her mom, Margherita Feldman, pose together for a photograph in December 2017. Three months later, Margherita Feldman, who had Alzheimers disease, died.(Photo: Feldman family photo)
In her work,but also while visiting with her mom, Dr. Feldman considered theenormityof theAlzheimers problem: About5.8 million Americansnow have the disease, according to thethe Alzheimers Association. That number will climb to at least 13.8 million by 2050,a 138%rise, and as many as 1 in 3 people who live to be 85 in the United States will die with Alzheimers disease.
We are really in an epidemic, Dr. Feldman said, driven largely bybaby boomers (those born between 1946 and 1964), who are growing older and coming to an agewhen the disease most commonly strikes.
Alzheimers disease is a form of dementia. Little is known about specifically what combination of factors causesAlzheimers disease, though scientists saygenetics, lifestyle and environmental exposures most likelyplay into it.
Dr. Rebecca Edelmayer, director of scientific engagement for the Alzheimers Association, explained that three specificbrain changes define the disease:
The most commonly recognized early symptom is a memory problem, said Jennifer Lepard, the president and CEO of the Alzheimers Association Greater MichiganChapter, but the disease doesnt always initially present that way.
Before memory loss, it can even bewhat we would call aneffect on your executive functioning, so itsyour ability to process information, make good decisions on complicated factors, planning, she said.One of the best examples of that is sometimes people begin to have trouble with finances.People who have always paid the bills, run the household budget, all of a sudden cant.
One of the reasons its not always easy to see the memory issues up front isits not always the earliest and most prevalent sign, but also because people that have what are called high cognitive reserves people who have a lot of education, who maybe had done very demanding jobs in the past and really utilized their brain a lot are sometimes very good at hiding symptoms and overcompensating.A lot oftimes, they know theyre having some memory issues and some problems, but they are pretty good at making sure that you dontsee it.
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As the disease progresses, there can be confusion about time and place, difficulty speaking and writing, poor judgment, changes in mood and personality, aggression and agitationand being unable to recognizeloved ones, according to the Alzheimers Association. Eventually, people lose the ability to speak, walk, sit and even to swallow.
Anyone with a brain, when they get older, is at risk of developing Alzheimers, Lepard said.There are a number of people that think, well, it wasntin my family, so Im sure I dont have it. And that is not the case.
Although the majority of people who get Alzheimers disease are 65 and older, Dr. Feldman said its also important tounderstand thatAlzheimers is not a normal part of aging, and it does also sometimes occur inyounger people. About200,000 Americans under the age of 65 have early-onset Alzheimers disease, she said.
Dr. Eva Feldman, a University of Michigan neurologist, professor and director of Michigan Medicines Program for Neurology Research & Discovery.(Photo: Scott C. Soderberg, University of Michigan Photography)
Other risk factors include your family history (especially if a first-degree relative has had Alzheimers disease), type 2 diabetes and obesity, high blood pressure, previous brain trauma, and your APOE-e4 status thisis the first risk gene identified and remains the gene with strongest impact on risk, Dr. Feldman said.
Women, too, are at greater risk. As are people of African American and Latino descent.
The average person with Alzheimers disease will live four to eightyears after diagnosis, said Lepard, and about 40% of that time, the personwill be in the most severe form of the disease, which requires around-the-clock care.
So, if you take a person who lives eight years after diagnosis, for three of those years, that person will be in the most severe aspects of the disease and will need 24-hour care and have lost most of their ability to keep up with the activities required in daily living, Lepard said.
The intensity of care that people need when the disease has progressed that far is often beyond whattheir loved ones can handle, she said. Plus, families quickly see how expensive long-termcare can be. The average cost to Medicare for a single person with dementia in 2018 was $27,244, according to theAlzheimers Association.
Caring for people with Alzheimers disease and other forms of dementiawill cost$290 billion this year alone.But by 2050, that cost is expected to rise to $1.1 trillion annually. Its the most expensive diseasein America with care costing more than cancer and heart disease, the Alzheimers Association reports.
We really see this bankrupting Medicare at some point, Lepard said. When we talk to members of Congress about the situation and why we need to invest in more research, its becausepeople cannot afford long-term care.
Many people, until they are in the situation of needing long-term care, really dont understand how its funded. They think well, if I have Medicare, Im sure its going to cover it all. Thats not really how long-term care is paid for.
The cost goes far beyond dollars and cents, Dr. Feldman said.
Thats a drain like you cant imagine, shesaid.Theres an economic drain, a drain on those individuals ability to work and be productive in society, a medical drain in terms of the cost to take care of the patient. But then, in my mind having lived it and its not quantifiablenecessarily in terms of dollars is the emotional toll that it takes not only on the patient but on the family.
Dr. Eva Feldman is photographed with her parents, George and Margherita Feldman.(Photo: Feldman family photo)
I saw whole families fall apart in that memory care unit. I saw other families come closer together. I think most families take care of their loved one absolutely as long as they can because you see the essential spirit and essence of the person, but theyre missing that one piece, the memory.
It is the loss, really, of the person that you know right in front of your eyes, and to see what that did to wives and husbands was eye-opening to me. It is cruel, and it is very, very difficult as the primary family member to lose the person you know.
Although the number of Americans with the disease isrising,Alzheimers true toll still maybeunderestimated. The Centers for Disease Control and Preventionreports that oftenwhen people with Alzheimers disease die, the cause of death listed on their death certificates may be pneumonia, heart attack or stroke; it sometimes isntnoted that the patient also had Alzheimers disease.
It was very common its getting better now that someone would be in the late stages of Alzheimers disease and their body is not functioning, Lepard said.They would develop pneumonia and die. Did they die because they developed pneumoniaor did they die because they had Alzheimers? Our argument is that they are dying because they had Alzheimers disease.
Jennifer Lepard, president and CEO of the Alzheimers Association Greater Michigan Chapter.(Photo: Alzheimers Association of Greater Michigan)
More and more, it is being put on death certificates if not as the main cause, it might be listed as pneumonia as a result of Alzheimers disease. We are pushing for that, she said, because it creates a more accurate picture of just how huge its reach truly is.
Without an accurate idea of the scope of the problem, health officials and public policy makers are less likely to give it the attention and research dollars needed to find new and better treatments, she said.
The National Institutes of Health allocated $2.3 billion for Alzheimers disease research this year, which is up significantly from the $500 million that was awarded six years ago.
That sounds like a tremendous amount of money, but it is still much less than NIH spends on AIDS, heart disease or cancer, Lepard said. Of course, we do not want less to be spent on those diseases, but we do believe that so much progress has been made on those diseases because they have been investing the research money to do it. Thats our biggest ask.
Although some treatments can helppeople with mild or moderate Alzheimers disease in the short-term, no treatments have yet been discovered that are effective long-term in stoppingbrain degeneration or reversing memory loss. There is no cure for the disease.
Just like every disorder, the more we can understand, the more awareness, and the more governmental input we can have and research dollars, Dr. Feldman said. There are so many unanswered questions and we really do need to continually do active research in this area and try to develop therapeutics.
Among them, Dr. Feldman said, is whether the disease could be treated earlier before symptoms develop with lifestyle changes,immunotherapy or a vaccine.
The scientists in Dr. Feldmans lab areworking to develop a breakthrough treatment using enhanced lines of human neural stem cells to reduce the buildup of amyloid plaquesto improve memory and learning deficits.
We recently received a grant from the National Institute on Aging to determine exactly how these stem cells impact (Alzheimers disease) and improve memory, she said.
She is fascinated, too, by thepower of music to stir remembrancesin people who have Alzheimers disease.
My mother was born and raised in Italy, and toward the end, she wasnt really speaking a great deal, Dr. Feldman said.Shed speak to me and have conversations, but she was definitely declining.
Margherita Feldman holds her children, Eva and George, on her lap for this passport photo.(Photo: Feldman family photo)
One evening, Dr. Feldman recalledtakingher mother to a sing-along at the assisted living center. A musiciansang many old-fashioned, well-known songs like A Bicycle Built for Two.
Since my mom didnt grow up here as much in her early life, she didnt know some of the songs the other residents knew, she said. But then, the guystarted singing a song in Italian. My moms eyes lit up, and she sang the entire song with him. And I looked at her, and she gave me a big smile, and then she kind of went back into herself, and the memory faded once again.
I saw that many times with music among the other residents. So, you know, its very interesting how music activates the mind. There are still parts of the brain that are working, and a lot of them still have their essential personalities. They just lost their memories.There are so many unanswered questions.
Margherita Feldman was 18 when this photograph of her sitting on a bench in Italy after World War II.(Photo: Feldman family photo)
Dr. Feldman, whose mother died in March 2018, said its hard to pinpoint what is most important moving forward.
As a doctor, I will tell you that early diagnosis, lifestyle intervention (diet/exercise), ensuring optimal care, safety and quality of life for the patient is the most important thing, she said.As my mothers daughter, I will tell you that remembering that the person affected may have lost their memory, but not their spirit, or some would say, their soul.
Contact Kristen Jordan Shamus: 313-222-5997 or [email protected]. Follow her on Twitter @kristenshamus.
The Alzheimers Associationis running the largest clinical trial of its kind in the U.S.to better to understand the best lifestyle interventions for people at risk for developing Alzheimers disease, said Dr. Rebecca Edelmayer, director of scientific engagement for the Alzheimers Association.
Called the U.S. Pointer Study, the association is recruiting 2,000 people ages 60-79 from diverse backgrounds to examine howbetter management of cardiovascular health factors,nutrition, exercise and social and cognitive stimulation can have has an effect on Alzheimers disease.
At this point, there have not been large enough trials to really understand in detail what the best recommendation in terms of modifiable risk factors should be for individuals living at risk of cognitive decline as we age, she said.
To learn more about whether you or someone you know might be a candidate for the U.S. Pointer Study or other Alzheimers disease clinical trials, go to:https://trialmatch.alz.org
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