TO CLOSE

Alzheimer's disease affects one in three seniors, according to the Alzheimer's Association. But that does not represent everyone affected by the disease.
Cronkite News

She had been studying Alzheimer's disease and its effects on the brain for years, but it was only when her own mother's memory began to slide that Dr. Eva Feldman, a neurologist at the University of California, was not there. University of Michigan, really understood how devastating the disease was.

Margherita Feldman was 88 years old when she moved in June 2017 to the memory care unit of a assisted retirement home in Saline. And although his memory loss has not been as acute as that of some other residents, it's when the cruelty of the disease – which is now the sixth leading cause of death in the United States – and the Magnitude of the Alzheimer's disease crisis in America have become clear to her. girl.

"I have learned more about dementia and Alzheimer's disease by spending many hours in this memory care unit than as a long-time practicing neurologist," said the Dr. Feldman, director of the Neurology Research Program at the University of Michigan. Discovery. "The people in the memory care unit, some were very violent.Some were very passive.Some were very young with very serious memory loss and Alzheimer's disease at an early stage. could see all the myriad of presentations and understand how extremely difficult it was for the patient, but also for families ".

Dr. Eva Feldman and her mother, Margherita Feldman, pose together for a photo in December 2017. Three months later, Margherita Feldman, who has Alzheimer's disease, died. (Photo: Feldman family photo)

In his work, but also during a visit to his mother, Dr. Feldman considered that Immense Alzheimer's disease problem: About 5.8 million Americans now have the disease, according to the Alzheimer's Association. This number will reach at least 13.8 million by 2050, an increase of 138%, and up to 1 in 3 people who will live at least 85 years in the United States will die of Alzheimer's disease.

"We are really in the midst of an epidemic," said Dr. Feldman, primarily to baby boomers (born between 1946 and 1964), who are aging and reaching an age when the disease strikes the most.

What is Alzheimer's disease?

Alzheimer's disease is a form of dementia. Little is known about the combination of factors that causes Alzheimer's disease, although scientists say that genetics, lifestyle and environmental exposures probably play a role.

Dr. Rebecca Edelmayer, Director of Scientific Engagement at the Alzheimer's Association, explained that three specific brain changes define the disease:

  • A protein called beta-amyloid accumulates in the brain and forms plaques.
  • Another protein called tau accumulates and forms entanglements in the brain.
  • When this happens, nerve cells in the brain die and brain size decreases.

The most commonly recognized early symptom is a memory problem, said Jennifer Lepard, President and CEO of the Greater Michigan Alzheimer's Association, but the disease does not always show up this way.

"Before the loss of memory, it may even be what we would call an effect on the functioning of your executive, so it's your ability to process information, make good decisions about complex factors, plan ahead. "she said. "One of the best examples of this is sometimes that people start having financial problems.People who have always paid the bills, manage the household budget, all of a sudden can not.

"One of the reasons it's not always easy to see memory problems in advance is that it's not always the oldest and most widespread sign. but also because people who have what is called high cognitive reserves – people who have a lot of education, who previously had done very demanding jobs in the past and used their brain a lot – they sometimes hid the symptoms very well and overcompensated for retention – they often knew they had memory problems and some problems, but they were pretty good at making sure you did not see it. "

New study: Michigan's manufacturing legacy could affect our health and our environment

More: Here is what we know about Kelly Stafford's brain tumor, acoustic neuroma

According to the Alzheimer Society, there can be confusion between time and place, difficulty speaking and writing, lack of judgment, changes in mood and personality, aggression and agitation, and inability to recognize one's loved ones. Finally, people lose the ability to speak, walk, sit and even swallow.

"Anyone with a brain, as they age, risks developing Alzheimer's disease," Lepard said. "A number of people think," Well, it was not in my family, so I'm sure I do not have it. "And that's not the case."

Although the majority of people with Alzheimer's disease are aged 65 and over, Dr. Feldman said that it was also important to understand that Alzheimer's disease is not part of of the normal process of aging and that it sometimes occurs among the younger ones. About 200,000 Americans under 65 have early Alzheimer's disease, she said.

Dr. Eva Feldman, neurologist at the University of Michigan, professor and director of research at the ALS clinic at the university. (Photo: Scott C. Soderberg, Photograph of the University of Michigan)

"Other risk factors include your family history (especially if a first-degree relative is suffering from Alzheimer's disease), type 2 diabetes and obesity, high blood pressure, previous brain trauma and your APOE-e4 status – this is the first identified risk gene and remains the gene with the highest impact on risk, "said Dr. Feldman.

Women are also more exposed. As are people of African American descent and Latino.

Costly balance sheet of Alzheimer's

The average person with Alzheimer's disease will live four to eight years after the diagnosis, said Lepard, and about 40% of this time will be suffering from the most severe form of the disease, which requires care of the patient. day and night.

"So, if you take a person who lives eight years after diagnosis, for three of those years, she will be affected by the most serious aspects of the disease and will require care 24 hours a day and will have lost the essential its ability to keep up with the activities required in everyday life, "said Lepard.

The intensity of care that people need when the disease has progressed to this point often exceeds what their loved ones can handle, she said. In addition, families quickly understand how expensive long-term care can be. According to the Alzheimer's Association, the average cost for Medicare of a single person with dementia in 2018 was $ 27,244.

Caring for people with Alzheimer's disease and other forms of dementia will cost $ 290 billion this year alone. But by 2050, this cost is expected to reach $ 1.1 trillion a year. It is the most expensive disease in America: the care costing more than cancer and heart disease, reports the Alzheimer's Association.

"We really see this insurance going bankrupt at some point," said Lepard. "When we talk to members of Congress about the situation and why we need to invest more in research, it's because people can not afford long-term care.

"Many people, until they need long-term care, really do not understand how they are funded.They think well, if I have health insurance I'm sure it will cover everything – it's not really how long-term care is paid. "

The cost goes well beyond dollars and cents, said Dr. Feldman.

"It's a drain that you can not imagine," she said. "There is an economic drain, a drain on the ability of these people to work and be productive in society, a medical drain in terms of cost to take care of the patient." But, in my mind, the Having lived – and this is not necessarily quantifiable in terms of dollars – is the emotional toll it takes not only on the patient but on the family.

"I have seen whole families fall apart in this memory care unit.I have seen other families come closer.I think most families … are taking care of their families. loved absolutely, as long as they can … because you see the essential spirit and essence of the person, but it misses that piece, the memory.

"It's really the loss of the person you know before your eyes, and seeing what it has done to wives and husbands has been a revelation to me, it's cruel, and it's very, very difficult. main member of the family to lose the person you know. "

Increasing number, more research dollars needed

Although the number of Americans with the disease is increasing, the true toll of Alzheimer's disease can still be underestimated. The Centers for Disease Control and Prevention report that often, when people with Alzheimer's disease die, the death on their death certificates may be pneumonia, heart attack or stroke; It is sometimes not noted that the patient also had Alzheimer's disease.

"It was very common – it's getting better and better now – than someone who is at an advanced stage of Alzheimer's disease and his body is not functioning," said Lepard. "They would develop pneumonia and die, are they dead because they developed pneumonia or died of Alzheimer's disease?" Our argument is that they die from Alzheimer's disease.

Jennifer Lepard, President and CEO of the Greater Michigan Alzheimer's Association. (Photo: Alzheimer's Association of Greater Michigan)

"Increasingly, death certificates are registered there, otherwise as the main cause, it could be classified as pneumonia as a result of Alzheimer's disease.We are pleading … for this," she said. stated, as this would create an accurate picture of the size of its scope. "

Without a clear idea of ​​the magnitude 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 to Alzheimer's disease research this year, a significant increase over the $ 500 million six years ago.

"It sounds like a huge amount of money, but it's still a lot less than what NIH is spending on AIDS, heart disease or cancer," Lepard said. "Of course, we do not wish to spend less on these diseases, but we believe that so much progress has been made in the fight against these diseases because they have invested research funds to do so. . "

Although some treatments may help people with mild to moderate Alzheimer's disease in the short term, no effective long-term treatment to curb brain degeneration or reverse memory loss has yet been discovered. There is no cure for the disease.

"Like any mess, the more we can understand, the more sensitized we are and the more we can rely on government and research budgets," said Dr. Feldman. "There are so many unanswered questions and we really need to do active research in this area and try to develop therapies."

Dr. Feldman explained whether the disease could be treated earlier, before the onset of symptoms, with changes in lifestyle, immunotherapy or complementary treatment. vaccine.

Scientists at Dr. Feldman's laboratory are working on developing a breakthrough treatment using improved human neural stem cell lines to reduce amyloid plaque buildup to improve memory and neuromuscular blockade. learning deficits.

"We recently received a grant from the National Institute of Aging to determine exactly the impact of these stem cells (Alzheimer's disease) and improve memory," she said.

She is also fascinated by the power of music to arouse memories in people with Alzheimer's disease.

"My mother was born and raised in Italy and in the end she did not really talk much," said Dr. Feldman. She was talking to me and arguing, but she was definitely declining. "

Margherita Feldman holds her children Eva and George on her lap for this photo ID. (Photo: Feldman family photo)

One evening, Dr. Feldman was reminded to have taken his mother to a concert at the Assisted Living Center. A musician has sung many outdated and well-known songs, such as "A bike built for two".

"Since my mother had not grown up so much at the beginning of her life, she did not know some of the songs that other residents knew," she said. But then, "the guy started singing a song in Italian, my mother's eyes lit up and she sang the whole song with him, and I looked at her and she did me a big smile, then she came back somehow "in herself, and the memory was erased once again.

"I've often seen it with music among other residents … So, you know, it's very interesting to see how music activates the mind." There are still parts of the brain that are working, and many of them still have their essential personalities.They just lost their memory.There are so many unanswered questions.

Dr. Feldman, whose mother passed away in March 2018, said it was difficult to identify what was most important for the future.

"As a doctor, I will tell you that an early diagnosis, intervention in the lifestyle (diet / exercise), guarantee optimal care, safety and quality of the patient's life is the most important thing, "she said. "As a daughter of my mother, I will tell you that, remember that the affected person may have lost their memory, but not their spirit, or some would say, their soul."

Contact Kristen Jordan Shamus at 313-222-5997 or at [email protected]. Follow her on Twitter @ Kristenshamus.

How to participate in clinical trials

The Alzheimer's Association has launched the largest clinical trial of its kind in the United States to better understand the best lifestyle interventions for people at risk of developing Alzheimer's disease, said Dr. Rebecca Edelmayer, Director of the scientific commitment of the Alzheimer's Association.

This study, called the American Pointer Pointer Study, recruits 2,000 people aged 60 to 79 from diverse backgrounds to examine how to better manage cardiovascular fitness, nutrition, exercise and social stimulation factors. and cognitive can have an effect on Alzheimer's disease.

"At this point, there have not been enough clinical trials to really understand in detail what should be the best recommendation in terms of modifiable risk factors for people living with a risk of cognitive decline with age, "she said.

To find out more about whether you or someone you know could be a candidate for the US Pointer study or other clinical trials of Alzheimer's disease, visit: https://trialmatch.alz.org

Read or share this story: https://www.freep.com/story/news/local/michigan/2019/04/30/alzheimers-disease-rates-rises-rising-baby-boomers/3539418002/