Lagos, who lives in Potomac, Md., brought up her concerns with family members, including relatives in her father’s home country of Chile. But they chalked them up to the changes in his life after retirement.
“I thought maybe it’s just me, if no one else in the family is seeing it,” Lagos said, and she dropped the subject.
It was not until two or three years later, when her father had a stroke, that he was diagnosed with Alzheimer’s. By then, it was too late to involve him in discussions about treatment options or end-of-life planning.
Often, when a person first exhibits signs of dementia, close family members are the first to notice. A parent starts repeating the same stories. A spouse forgets how to get home from the grocery store. Daily life feels off in ways that are at first subtle, then less so.
Bringing up cognitive decline with a loved one can be so fraught with pain, embarrassment and denial that many are reluctant to broach the topic until far into dementia’s progression.
A survey released this week by the Alzheimer’s Association finds that nearly 90 percent of Americans say they would want others to tell them if they were showing signs of memory loss or other symptoms of dementia. And yet, nearly three quarters of Americans say having that conversation would be “challenging” for them.
There is no cure for Alzheimer’s, but talking about it early in the disease’s progression is crucial, said Ruth Drew, director of information and support services at the Alzheimer’s Association.
Talking about the disease in its early stages gives people time to take care of legal and financial issues, make a long-planned trip, participate in their treatment plan or join a medical trial, Drew said.
“It gives you a voice,” she said. “If you know early on, you have a voice on how things go and who’s going to make decisions on your behalf.”
Talking about symptoms can even help rule out Alzheimer’s. “There are a lot of conditions that can manifest as cognitive-decline symptoms, but it may be another disease” that could be curable, Drew said.
An estimated 5.8 million Americans are living with Alzheimer’s dementia, and that number is projected to more than double to 13.8 million by 2050, barring the development of medical breakthroughs to prevent, slow or cure it.
Patients cannot always rely on their doctors to notice Alzheimer’s or test for it. Only half of seniors are assessed for thinking and memory issues, and only 16 percent receive regular cognitive assessments, according to the 2019 Alzheimer’s Disease Facts and Figures report by the Alzheimer’s Association.
Even when doctors do diagnose it, only 45 percent of patients and their caregivers are told the diagnosis, according to the organization’s 2015 report, which also found that when people were told, often it was only after the disease had become more advanced.
“A lot of physicians, even when they’re prescribing Alzheimer’s medication, are not using the word Alzheimer’s or sharing the information about Alzheimer’s with their patients,” Drew said. “We know that early detection doesn’t start in the doctor’s office; it starts with conversations families are having with each other.”
This week the organization launched an ad campaign with the nonprofit Ad Council that encourages people to speak up if they suspect cognitive decline in themselves or their loved ones. It consists of public-service spots in which real people describe the conversations they had with family members when they started to notice changes.
One of them, Tom Doyle, was a 63-year-old professor of education when he noticed he was increasingly unable to answer his students’ questions or give lectures he had given for years.
“I could no longer grade papers and my office became so disorganized at home,” said Doyle, now 66.
It was his psychologist who brought up that he might have dementia and called in his husband Levi Doyle to talk about it. Eventually Tom Doyle went on disability and the couple moved from California to Chicago to be closer to Tom’s family.
He talked frankly with his husband, father, nieces and cousins about his cognitive decline and they rallied around him, helping to bring him out of a dark place, he said.
“It was really liberating,” he said. “It was too hard to keep it inside.”
Tom Doyle’s response was the opposite of his mother’s. She retreated after learning she had Alzheimer’s and didn’t want to talk with anyone about it, whereas he shares it openly and has become an adviser on early-stage dementia with the Alzheimer’s Association.
“I couldn’t go that route,” he said. “When people talk too fast, I have to stop and tell them I have dementia. It’s really been a blessing to me to talk about it, because you get that kind of support.”
When initiating the conversation, family members should be careful of jumping to conclusions, said Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging.
“It’s not something you want to jump into and say, ‘Dad, I think you have Alzheimer’s,’ ” he said. “You might say, ‘Dad, have you noticed, are you more forgetful than you used to be? You seem to be repeating yourself.’ ”
Petersen, who gives a talk called “How Much Forgetfulness is Too Much?” said Americans are more comfortable than they once were with conversations about cognitive impairment, and added that there is a lot more nuance in those conversations than there once was.
“Twenty years ago, we had normal, and then we had dementia,” he said.
Now, mild cognitive decline is a commonly recognized term to describe problems that may be early signs of dementia or may, in fact, be caused by reversible non-dementia-related factors, such as a reaction to medication or changes in sleep patterns.
Carol Parker of McLean, Va., said she was in denial for two years after her husband David, 78, started showing signs of dementia, including uncharacteristic irritability.
“Dave’s behavior changed tremendously, but we thought that maybe he was bored” since retiring as president and chief executive of the American Gas Association, she said. It took a longtime friend who was a nurse to bring it up with Parker and the couple’s daughter.
“Pat basically told us that we were not helping Dave with the changes going on, and we were not helping ourselves” by ignoring them, Parker said. “We didn’t like hearing it, but deep down we knew she was telling the truth.”
With their friend, they went home and broached the subject. At first, he said he was fine and nothing was wrong with him, but after their friend showed him information online, he started to come around.
“It wasn’t a depressing talk. It was more like, ‘There are things that we can do and there are ways that we can cope,’ ” Parker said.
Now, she said, “Dave and I talk about it all the time. We try to keep it as open and honest as possible. . . . You’re a lot better understanding and knowing what’s going on.”
Lagos wishes she could have had the opportunity to talk with her father about his illness before he died in 2017 at age 74, after spending his last two years in a nursing home in Chile.
“He didn’t have a will,” she said. “If he had been diagnosed earlier, he could have told us what he wanted his end of life to look like. … I would have loved to have known what he really wanted, as opposed to all of us guessing.”