The costs of Alzheimer’s disease – human and financial – are rising sharply in California and nationally, and census projections for the rapidly aging population in the United States suggest that the scope of the disease could soon rival what the United States has seen. during the height of the COVID-19 pandemic.
Indeed, new data from the Alzheimer’s Association’s 2023 Facts and Figures report, released Wednesday, March 15, points to several ways the disease is already reshaping American life:
• Last year, nearly 200,000 Americans over age 65 were diagnosed with Alzheimer’s and other forms of dementia, bringing the number of dementia sufferers in that age group to about 6.7 million. By 2050, the Alzheimer’s Association projects that number will nearly double, to around 13 million. (In California, the number of people with Alzheimer’s has been growing at a slightly faster rate, and by 2025 it is expected to reach 840,000, a 21.7% increase over a five-year window.)
• Annual spending on care for people with Alzheimer’s and other forms of dementia grew by about $24 billion last year, to about $345 billion. By 2050, such spending is expected to approach $1 trillion.
• The value of unpaid care is already almost equal to that of paid care. Last year, nearly 11 million Americans served as caregivers for people with Alzheimer’s, providing nearly 18 billion hours of unpaid work worth $339.5 billion. These numbers could also double as the population ages. Overall, the US Census Bureau projects that the number of Americans age 65 and older — the primary age group hit by Alzheimer’s disease — will jump from about 63 million today to about 88 million by 2050.
Other data from the Alzheimer’s Association highlight different aspects of the disease and its social effects, from possible treatments to the physical and emotional distress of caregivers.
Here are some findings from this year’s report:
It took about 13 months or so for pharmaceutical companies and the government to come up with vaccines and treatments for COVID-19.
Alzheimer’s, so far, has been more stubborn.
Decades of research have produced no cure for Alzheimer’s, and in the absence of other factors, the progressive neurological disease still kills most patients, usually four to eight years after the initial diagnosis. Last year, federal data shows that Alzheimer’s disease was the seventh leading cause of death in the United States, and before the emergence of COVID-19, it typically ranked 6th.
Still, experts are cautiously optimistic about the recent direction of Alzheimer’s treatments.
The Alzheimer’s Association report lists seven Alzheimer’s medications that are currently approved by the Food and Drug Administration, most of which are aimed at temporarily warding off symptoms of the disease.
But the report notes that two drugs, aducanumab and lecanemab, aim to “alter the underlying biology of the disease.” And this week, the Veterans Health Administration (VHA) said it would cover the use of lecanemab, which is sold under the brand name Leqembi at a cost of about $26,500 a year. Federal officials said the Food and Drug Administration will decide in early July whether to allow Medicare to make a similar move, meaning coverage could be expanded to include Medicare patients not enrolled in clinical trials.
Research has shown that both drugs delay cognitive loss by 20% to 30% when compared to a placebo.
Experts say that even if current drugs are not, by themselves, revolutionary, they are important because their biological focus represents a new arena in the battle against disease.
“This is a foundation,” said Nicole Purcell, a neurologist and senior director of clinical practice for the Alzheimer’s Association. “It’s just one type of medicine, but it’s a reason to be hopeful for the future.”
But Purcell, like other health experts, noted that the drugs are still aimed at people who have Alzheimer’s but haven’t yet developed severe symptoms of dementia. That’s why she and others recommend that people talk about cognitive issues with a doctor as soon as they experience any cognitive decline.
But these conversations are still not happening as often as they should.
For years, Alzheimer’s advocates have pressed seniors to talk to health experts — not just their spouses or friends — as soon as they notice any cognitive decline. And for years, millions of older Americans ignored that advice.
This reluctance is so pervasive and persistent that, prior to this year’s report, the Alzheimer’s Association conducted a series of focus groups to find out why.
The reasons, according to these focus groups, range from ignorance about the disease, to the belief that the risks of learning about the disease outweigh the benefits of treatment, to simple fear.
In addition, the report found that a significant number (up to 40%) of primary care physicians say they are reluctant to tell a patient they have Alzheimer’s and instead refer them to specialists.
Purcell said such discussions need to be “routine”.
“There is much more that can be done at this stage of the disease than later.”
But even if people are willing to talk about symptoms that may (or may not) be signs of Alzheimer’s, the report found some reluctance on the part of health professionals. Not only do primary care physicians hate diagnosing anyone with Alzheimer’s, the world of people who specialize in making such diagnoses — gerontologists and others — is too small to handle the current demand, let alone the next wave of Alzheimer’s patients.
Even the non-professional side of Alzheimer’s care – the so-called “direct health” workers who have the skills, patience and creativity of people to work well with people suffering from dementia – is underrated. The report projects that the country will need at least 1 million new “direct health workers” by 2030.
If there is a shortage of workers to help dementia patients now and in the future, people like Richard Wade will make up for it.
Wade, a retired psychotherapist in Santa Clarita, and his sister-in-law care for his wife, who has seen her Alzheimer’s symptoms progress over the past year. Last year, around 11 million people across the country did something similar; by 2035, that number will likely jump to 20 million or more.
“I’m lucky, financially. But if I wasn’t retired, I would have to hire someone to take care of her, and that’s not something most people can do,” Wade said.
Wade said caring for a spouse with dementia can be daunting “on every level.” But he also said, in his case, “it can also be rewarding.”
“I’m from the age group where ‘in sickness and in health’ still means something,” he said. “And I love my wife, so that’s not always a burden.”
The report found that for many Alzheimer’s caregivers — usually spouses, often the same age, or adult children, who often have children of their own to raise — the non-financial costs of caring can be high.
Dementia caregivers, according to the report, suffer a higher incidence of stroke and heart disease, diabetes and cancer than other people their age. Caregivers, the report found, also suffer from higher rates of depression and anxiety and are 10 times more likely than others to contemplate suicide.
Wade, who attends a support group for caregivers, suggested the role is “bigger, in a way” than any other job she’s had.
“It literally affects everything in my life.”
Late last year, actor Chris Hemsworth took a hiatus from public life after discovering he carried a genetic marker (double ApoE4) that suggests the highest possible risk of developing Alzheimer’s later in life. About 2.5% of the population carry the E4 double gene, and their chances of eventually developing Alzheimer’s disease are 8 to 12 times higher than average.
Hemsworth learned about his genes through an expensive and rarely administered test. Some experts believe that if it were less expensive and less rare, this test could be a long-term game changer for Alzheimer’s treatment, if not a cure.
Still, for now, the Alzheimer’s Association is not promoting widespread genetic testing. Experts note that these tests only suggest — but cannot predict — an individual’s possible future with the disease. The organization’s official position includes this line: “(Genetic) testing can never predict whether or not a person will have Alzheimer’s disease.”
But what if you could?
The Alzheimer’s Sequencing Project, which includes 345 scientists in 62 countries, began work in this area in 2002, but some of the biggest advances have come recently.
For example, science conducted under the aegis of the Sequencing Project has found that Alzheimer’s disease is not a single disease but part of a broad genetic spectrum. The researchers also found that while genetics aren’t the only factor (everything from lifestyle to environment also plays a role), genes may be responsible for up to 80% of what is described as “susceptibility”. to diseases”.
And in its report released this week, the Alzheimer’s Association noted that in the past year alone researchers have identified 31 new genetic markers that “appear to affect biological processes known to be at play in Alzheimer’s disease.”
For his part, Purcell, a neuroscientist at the Alzheimer’s Association, suggests a path that is less about genetics and other branches of science and more about basic, noninvasive health.
Sleeping well and eating well, she said, can help prevent Alzheimer’s disease. And studies show that exercise, particularly exercise that raises your heart rate, even if started later in life, can be a particularly strong defense against developing Alzheimer’s disease. A pooled analysis of 12 different UK studies found that exercise reduced the incidence of Alzheimer’s by 45%.
Purcell said the Alzheimer’s Association is leading US Pointer, a two-year study of about 2,000 people, ages 60 to 79, that will explore how everything from diet and exercise to social connections may or may not prevent the decline. cognitive.
When it comes to genetics versus environment or behavior, Purcell said, “We can’t say ‘either or’ right now. We want to understand both. That’s why we are engaged in the Pointer project. We want to see if we can create a lifestyle recipe to reduce the risk of cognitive decline as we age.
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