Feb. 25, 2016 -- People recognize the seriousness of Alzheimer’s disease, but they aren’t taking steps to learn about their personal chances of getting the disease or to prepare for it financially, according to a new survey.
The WebMD and Shriver Report Snapshot: “Insight Into Alzheimer’s Attitudes and Behaviors,” asked more than 4,200 WebMD readers their beliefs and experiences regarding the disease. (See infographic of key findings here.)
"It's incredibly tough to think about losing your mind or watching a loved one struggle with Alzheimer’s,” says Michael Smith, MD, WebMD’s chief medical editor. “There is great concern about the impact of this disease, but denial, fear or other unknown factors seem to be preventing us from taking the necessary steps to prepare.”
Still, many people say they are taking actions to stay healthy that might benefit their brains as they age.
An estimated 1 in 9 people over 65 (11%) have Alzheimer’s, according to the Alzheimer’s Association. As the population ages, however, those numbers are expected to nearly triple by 2050.
"The first baby boomers are turning 70 this year. The risk for Alzheimer's begins to increase dramatically at the age of 65, and goes up until age 90 or so, maybe even after that," says Keith Fargo, PhD, director of scientific programs and outreach for the Alzheimer’s Association. “We’re facing a wave of dementia coming our way in the coming decade — and it’s starting now, not 30-40 years from now.”
Finances and Prevention
Although the lifetime cost of care for someone with Alzheimer’s is an estimated $174,000, most survey respondents say they aren’t prepared:
- 71% say their family is not financially equipped to deal with the disease
- 66% believe Alzheimer’s could harm their family financially
“It’s really critical for people to plan ahead,” Fargo says. “There are lots of things that people can do now to get ready for possible cognitive decline or dementia, whether that’s due to Alzheimer’s or something else.”
Those preparations should include educating yourself on the availability of long-term care insurance and those options, as well as the role of Medicare and Medicaid, he says.
The survey also shows a disconnect in how much respondents really want to know about their risk of getting the disease — it’s the sixth leading cause of death in the U.S. and has no cure. Two-thirds of people say they’d want to know their risk for developing Alzheimer’s later in life. But when presented with a list of ways to do that, a much smaller percentage say they have taken or would take steps to do it.
Those steps include:
- Reviewing family history with their doctor (42%)
- Reviewing lifestyle factors like diet and exercise with their doctor (40%)
- Reviewing medical history with their doctor, including questions about brain trauma (31%)
- Taking a genetic test to determine whether they have genes that raise their odds of getting the disease (25%)
- Getting a brain scan to spot signs of the disease (22%)
Forty-one percent say they haven’t — or aren’t willing to — take any of the proposed steps.
Another 46% say they aren’t worried about getting Alzheimer’s in the future, mainly because they take care of their health and also because they can’t do anything about it.
“Most people probably don’t want to think about developing a chronic disease, especially Alzheimer’s, which is universally fatal,” Fargo says. “Once you’re into the dementia part of Alzheimer’s, that’s not going to get better.”
Thirty-four percent of respondents say they’re concerned about getting the disease in the future. Of those, 69% say they’re concerned because they don’t want to become a burden to their family, with 60% concerned because there’s no cure.
Doctors also believe there isn’t much that can be done to avoid the disease, according to a survey of doctors conducted by WebMD’s sister site, Medscape. Only 29% of the 403 surveyed say they believe it’s possible to prevent the onset of Alzheimer’s, although 77% think it’s possible to slow its progression.
“Certainly, it’s something people should be worried about, especially given the fact that right now there’s nothing that can be done to reverse it,” Fargo says. “Once you have Alzheimer’s disease … right now, that’s a death sentence. Some of these other things are more manageable. Cancer, heart disease, stroke, all those are survivable, at least in some cases.”
Fargo says people may not realize they can lower their risk. “There are many actions you can take — stop smoking, exercise, and more,” he says. “All of those things are known to reduce the risk of cognitive decline in aging and may prevent or at least delay the onset of Alzheimer’s. These are actions that people can take, literally in their living rooms, on a daily basis.”
Many people say they are trying to stay physically and mentally healthy — steps that may ultimately help lower their Alzheimer’s risk.
They say they’re:
- Staying mentally or intellectually active (74%)
- Eating a healthy diet (64%)
- Taking vitamins or supplements (59%)
- Exercising (56%)
- Staying socially active (54%)
Alzheimer’s has been called a family disease because family members are so often involved in caregiving. For every person with Alzheimer’s, three people are providing informal care to them, Fargo says. Those most often are family and friends.
In the survey, more than 1 in 5 people (22%) who know someone with Alzheimer’s also say they’ve taken on caregiving responsibilities, either currently or in the past, for someone with the disease. That was most commonly a parent (41%).
- 28% say they spent more than 40 hours a week on caregiving duties.
- 63% say that time came out of their own family or personal time.
- 21% have worked fewer hours at a job because of caregiving.
- More than 1 in 5 have scaled back their working hours to care for the person with Alzheimer’s.
- 73% have searched for a better or safer living situation for the person they’re caring for.
- 64% have created or updated wills and assumed power of attorney.
“Caregiving comes at such great personal cost,” Smith says. “It’s like tacking on another part- or full-time job while still having to do everything else you did before. The stress that stems from this has far-reaching effects on both the caregiver’s health and finances.”
Meanwhile, 22% of people who aren’t currently a caregiver say they expect they would be the person responsible for the majority of caregiving if their parent or grandparent was diagnosed with Alzheimer’s.
Seventy-eight percent of respondents say they know or have known someone with Alzheimer’s. That was most likely to be a friend, associate, or work colleague (41%).
That may be why most people in the survey are informed about the disease. The vast majority of respondents know that Alzheimer’s can strike people in their 40s, and most also know it begins affecting the brain some 20 years before you get the symptoms.
Fargo called it a step in the right direction that two-thirds of people realize Alzheimer’s is fatal. “Ten years ago, people may not have said that. It may just be, ‘Mom’s slipping,’ or ‘Dad’s getting older and it’s showing.’ Many people do expect cognitive decline as they age, so that’s an understandable misconception, but it is a misconception.”
But the survey takers aren’t as sure about who gets the disease:
- 47% say they believe it strikes men and women equally. Nearly two-thirds of Americans with Alzheimer’s are women.
- 67% don’t know that African-Americans and Hispanics are more likely to get it than whites.
The youngest respondents were 374 people 18 to 34 years old. Although millennials say they’re more likely than any other age group to be “caregivers on deck” (32%), they are also the least likely to be financially prepared.
- 66% say they haven’t considered the disease’s financial implications.
- 66% say they believe costs related to Alzheimer’s could harm their family financially.
“This is something millennials are dealing with now,” Fargo says, noting that about a quarter of a million people ages 8 to 18 help provide informal care, usually for an elderly family member. The survey found that 19% of them are a caregiver or had been one in the past.
Asked when they believe there will be a cure for Alzheimer’s, nearly half of all respondents — 48% — say they aren’t sure. Another 22% predict there will be a cure by the year 2025, and 17% say by the year 2050.
More than 3 in 4, or 76%, say they know the symptoms of Alzheimer’s. Far fewer, only 38%, say they’re aware of treatments for the disease. Although treatments are available, none of them cure the disease or stop it from getting worse.
But Fargo says the Alzheimer’s research community is “actually more optimistic than ever.” He says that last year Congress voted to increase research funding for the disease by $ 350 million per year, to nearly $ 1 billion. But that’s half of what the scientific community says it needs, he says.
The association and others continue to call for more research dollars. “We believe that’s where the answer will come from, the scientific field … as many smart people working on this as we can.”