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When Tatiana Lagos' father stopped driving, she did not think much about it at first.
He said, "Hey, can you come get me? "Lagos recalled his father, over 60 years old, who had just retired from a career in international law. "And he leaned heavily on his wife for the smallest things," like making an appointment for a coffee.
Lagos, who lives in Potomac, Maryland, has shared his concerns with family members, including parents in the home country of his father, Chile. But they put them in the account of changes in his life after retirement.
"I thought maybe it was just me, if anyone else in the family did not see it," said Lagos, and she dropped the subject.
It was only two or three years later, when his father had a stroke, that he was diagnosed with Alzheimer's disease. At that time, it was too late to involve him in discussions about treatment options or end-of-life planning.
Often, when a person presents for the first time signs of dementia, close family members are the first to notice it. A parent starts repeating the same stories. A spouse forgets how to go home to the grocery store. Everyday life feels subtle at first, then less.
Addressing cognitive decline with a loved one can be so fraught with pain, embarrassment, and denial that many are reluctant to approach the subject until an advanced stage of dementia progression.
A survey released this week by the Alzheimer's Association reveals that nearly 90% of Americans state that they would like others to tell them if they are showing signs of memory loss or others symptoms of dementia. And yet, nearly three quarters of Americans believe that this conversation would be "difficult" for them.
There is no cure for Alzheimer's disease, but it's critical to talk about it early on in the progression of the disease, said Ruth Drew, director of information and support services for Alzheimer's disease. Alzheimer's Association.
Talking about the disease early on gives people time to deal with legal and financial issues, to make a long-term planned trip, to participate in their treatment plan or to participate in a medical trial, said Drew.
"It gives you a voice," she says. "If you know very early, you have a voice on how things are going and who will make the decisions on your behalf."
Talking about symptoms can even help eliminate Alzheimer's disease. "There are many conditions that can manifest as symptoms of cognitive decline, but it could be another disease that could be cured," said Drew.
An estimated 5.8 million Americans live with Alzheimer's dementia and this number is expected to more than double to reach 13.8 million by 2050, unless medical advances are made. to prevent, slow down or cure this disease.
Patients can not always rely on their doctors to detect Alzheimer's disease or to get tested. According to the Facts and Figures Report of Alzheimer's Disease of 2019 published by the Alzheimer's Association, only half of older adults are assessed for thought and memory problems and only 16% of them they are the subject of regular cognitive evaluations.
Even when doctors diagnose it, only 45% of patients and their caregivers learn the diagnosis, according to the 2015 report from the organization, which also revealed that when told to them this n & # 39; It was often only after the illness had become more advanced.
"Many doctors, even when they prescribe drugs to fight Alzheimer's disease, do not use the word Alzheimer's or do not share information about this disease with their patients," said Drew. . "We know that early detection does not start in the doctor, it starts with conversations families have with each other."
This week, the organization launched a new ad campaign with Ad Council, a non-profit organization that encourages people to speak out if they suspect cognitive decline in themselves or their loved ones. These are public service spots in which real people describe the conversations they had with family members when they started noticing changes.
One of them, Tom Doyle, was a 63-year-old education teacher when he noticed that he was increasingly unable to answer questions from his students. students or giving lectures that he had been giving for years.
"I could not sort the papers anymore and my office became so disorganized at home," said Doyle, 66.
It's his psychologist who told him that he could be suffering from dementia and called on his husband, Levi Doyle, to talk about it. Tom Doyle eventually became disabled and the couple left California for Chicago to get closer to Tom's family.
He spoke frankly with his husband, father, nieces and cousins about his cognitive decline, and they gathered around him to help him out of a dark place, did not he? -he declares.
"It was really liberating," he said. "It was too difficult to keep it inside."
Tom Doyle's answer was the opposite of his mother's. She retired after learning that she was suffering from Alzheimer's disease and did not want to talk to anyone about it, while he openly shared it and became an early dementia counselor. with the Alzheimer's Association.
"I could not go that route," he said. "When people talk too fast, I have to stop and tell them that I have dementia, it's really a blessing for me to talk about it, because you get that kind of support . "
At the beginning of the conversation, family members should be careful not to draw conclusions, said Ronald Petersen, director of the Mayo Clinic's Alzheimer's Disease Research Center and the study. on the aging of the Mayo Clinic.
"This is not something you want to dive into and say," Dad, I think you have Alzheimer's disease, "he said. "You could say," Papa, did you notice, are you more forgetful than you were? "You seem to be repeating yourself.
Petersen, who gives a lecture entitled "How much is forgetting, is it too much?" Americans are more comfortable than they were formerly in conversations about cognitive disorders, and add that they are much more nuanced than they do. were before.
"Twenty years ago, we had a normal situation, then a dementia," he said.
Now, mild cognitive decline is a commonly accepted term to describe problems that may be early signs of dementia or may actually be caused by reversible factors unrelated to dementia, such as a drug reaction or alterations. sleep habits.
Carol Parker, of McLean, Va., Said she was refusing to live for two years after her husband, David, aged 78, began to show signs of dementia, including unusual irritability.
"Dave's behavior has changed tremendously, but we thought he might have been bored" since retiring as president and CEO of the American Gas Association, she said. . It took a longtime friend, a nurse, to talk to Parker and the couple's daughter.
"Basically, Pat told us that we were not helping Dave cope with the changes and that we were not using ourselves" by ignoring them, Parker said. "We did not like hearing it, but deep inside we knew that she was telling the truth."
With their friend, they went home and talked about it. At first, he said that he was fine and that everything was fine, but after their friend showed him information online, he started going around.
"It was not a depressing conversation, it was rather:" There are things we can do and ways to get out of it, "Parker said.
Now, she says, "Dave and I talk about it all the time, we try to keep it as open and honest as possible …. You understand a lot better and understand what's going on."
Lagos wished he could talk about his illness to his father before his death in 2017, at the age of 74, after spending his last two years in a retirement home in Chile.
"He had no will," she says. "If he had been diagnosed earlier, he could have told us what he wanted to look like at the end of his life … I would have loved to know what he really wanted, instead of guessing it." . "
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