“I remember my wife, Dora, coming home one day and telling me she had a problem while driving,” said Bill Collier, a marketing professional living near Harrisburg, Pennsylvania. “She said she stopped at an intersection and suddenly couldn’t remember where she was going.”
That was in August of 2015. Then things got worse. Within months, Collier said Dora began experiencing nervous breakdowns and hallucinations on a nightly basis.
“She freaked out at me, at the world, at God — you name it,” he told VOA. “Most nights we both ended up in tears because we didn’t know what was going on or why it was happening.”
It wasn’t until nearly six years later, in February 2021, that Dora, now 57, was finally diagnosed with Alzheimer’s disease, a progressive mental deterioration most commonly suffered by the elderly, but which can also strike middle-aged people. The disease, the sixth leading cause of death in the United States and the only one in the top 10 without a cure or potentially reversible treatment, causes brain cell connections and the cells themselves to degenerate and die.
The eventual result is the destruction of memory and other important mental functions.
“The day we got the diagnosis felt like getting a death sentence,” Collier said. “Dora is still alive, but it’s been the eight toughest years of my life. Alzheimer’s is like a slow motion, everyday horror movie with a senseless plot that haunts my thoughts each hour I’m awake.”
Diagnosing the disease
“Alzheimer’s disease is a public health crisis, and it’s growing at a rapid rate,” explained Ruby Dehkharghani, director of public policy at the Alzheimer’s Foundation of America (AFA).
According to the Alzheimer’s Association, 6.5 million Americans live with the disease, including roughly one in nine senior citizens. The Centers for Disease Control and Prevention (CDC) projects that number to more than double to 13.8 million people by 2060.
Family members of those with Alzheimer’s say one major problem is how long it can take to diagnose the issue and begin treatment.
“On one hand, it’s hard to get doctors and health care systems to take family members seriously during the early, undiagnosed stages of Alzheimer’s,” Collier said. “On the other hand, you have patients themselves avoiding getting tested and lying to the doctor because they don’t want to admit what amounts to a horrible truth.”
This is what Krista Patrick-Brown, a school principal in New Orleans, Louisiana, experienced with her father.
“My dad was diagnosed in the fall of 2020, when it was obvious to the rest of us that something was going on and he needed to be tested,” Patrick-Brown told VOA.
It was only when the family gained access to his medical records at the time of diagnosis that they learned he had expressed concern to his doctor three years earlier because he was struggling to perform his job.
“I think he was scared to tell anyone, or maybe the realization that it could be something serious made him avoid learning more,” she continued. “Either way, he didn’t follow up until it was unavoidable, and I can’t help but imagine how starting his medicine years earlier might have slowed his deterioration.”
Drugs have recently been developed that can slow but not stop the progression of Alzheimer’s, if administered in the early stages of the disease. Such treatments are expensive and can have side effects. While drugmakers race to develop and test what is hoped will be more effective treatments, there is no indication that a cure is on the horizon.
“The current medications for Alzheimer’s have very, very modest benefits,” said Colleen Kenny, a nurse who works with dementia patients at a hospital outside of Chicago. “Families should temper their expectations for how well they should work.”
A nightmare
Patrick-Brown said her father’s loss of independence has been one of the more difficult aspects of the disease for him.
She said they tried to encourage him to stop driving on his own, for example, but he resisted. Once her father’s doctor reported his diagnosis to the state, he had to either pass a driver’s test or forfeit his license.
“It was awful. He spent weeks trying to study for the test, but he couldn’t process the information,” Patrick-Brown remembered. “His anxiety increased and he didn’t seem to even completely grasp why he was being asked to take the test in the first place.”
“I think that’s when our roles flipped indefinitely,” she said. “From then on, my father would always be child-like to me and my brother, and we are now his parents.”
It’s common for patients with dementia — of which Alzheimer’s is the most common type — to exhibit behaviors found in younger children, such as mood swings, tantrums, irrationality, forgetfulness, vocabulary problems, fear, and extreme dependence on family members.
“They get angry, sensitive, and irrational,” said Margarita Hernandez, an aide for Alzheimer’s patients in Commack, New York, “but of course it’s not their fault. They didn’t choose this. They are innocent and we need to respond by giving them love, attention, and help.”
Life of a caregiver
Dehkharghani of the AFA notes that Alzheimer’s patients aren’t the only ones severely impacted by the disease.
“Many of the things that make it challenging for the person living with Alzheimer’s are what also make it challenging for family members providing care,” she said. “Caregivers will be expected to provide greater assistance to their loved ones as the disease progresses, and they’ll carry the emotional impact of watching their personalities change. It’s not something someone should be expected to do alone.”
Alexandra Magiera, who works in education in Chicago, Illinois, and is a volunteer for the Alzheimer’s Association, said she was just 15 years old when her mother, Lizzie, was diagnosed with the disease.
For Lizzie, it started with what appeared to be small things such as confusion about where she was supposed to be, but Magiera said it quickly got worse.
“A year later she had trouble remembering my name, and a few years after that she no longer knew who I was,” she said. “That, plus there were times she was getting angry and combative. It was all heartbreaking.”
When Magiera left for college, the responsibility of caregiver for her mother fell even more squarely on her father’s shoulders.
“She was the love of my dad’s life and he cared for her as best as he could,” she said, “but the physical and emotional demand was too much and eventually he had to place her in a nursing home. I know it was one of the hardest decisions he ever had to make.”
During the last two years of Lizzie’s life, Magiera’s dad couldn’t stand it anymore.
“He told a friend, ‘I’m bringing Lizzie home; I miss her too much,’ and that’s what he did,” Magiera said. “I think he relished every moment he was able to spend with her.”
Moving forward
According to the CDC, more than 11 million Americans care for a loved one with Alzheimer’s. For many, it’s not possible to be the sole caregiver.
“I hate to say it, but unfortunately money is key,” explained Kenny. “In-home health aides aren’t often covered by insurance, and a decent nursing home for my father, who had dementia, cost $7,000 per month. There aren’t easy solutions.”
Magiera said her father had been retired for 20 years, but after her mother died in 2011, he had to go back to work to help pay for his wife’s medical bills.
“I can’t even imagine what would have happened if he hadn’t been on such solid financial footing to start,” Magiera said.
The heartbreak this disease has caused so many Americans and their families has stirred Washington to action.
When the National Plan to Address Alzheimer’s Disease was released in 2011, initial funding totaled approximately $500 million a year, far below the $2 billion goal that leading scientists had estimated was necessary to find a treatment or cure by 2025. More recently, however, politicians have worked together to increase federal research investment to more than $3.4 billion last year.
“It’s encouraging to see such a bipartisan effort, but we’re not across the finish line yet,” said Dehkharghani. “There are still so many unanswered scientific questions when it comes to Alzheimer’s, but researchers are working very hard to discover answers and to hopefully find the breakthrough that will lead to the treatment and cure we’re all hoping for.”
In the meantime, things have been learned to stave off the effects of Alzheimer’s, including cardiovascular exercise, maintaining a healthy blood pressure, continuing a consistent level of socialization and, of course, early diagnosis.
“I sometimes wonder what we’d be doing right now if my wife had early treatment,” Collier told VOA. “Would we be traveling the world? Would we be checking items off her bucket list?”
“Instead, I go to her senior living facility every day,” he continued, “because I want the nurses to know this woman who has been reduced to shuffling and mumbling is still my Dora — she’s a Navy veteran and a very accomplished woman, and I want them to know her story.”
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