En español | Patients and health care providers aren’t always on the same page when it comes to dementia. And stigma surrounding the disease factors into the disconnect, new AARP research shows.
Nearly 20 percent of adults 40 and older say they would feel ashamed or embarrassed if they had dementia, according to an AARP survey presented at the Milken Institute’s Future of Health Summit. Health care providers, however, assume a much greater share of patients (about 70 percent) would feel this way if handed a diagnosis.
Loss of independence fuels the fear of a dementia diagnosis, the survey found — so does the thought of becoming a burden to others. The research also reveals that far too many adults age 40 and older assume dementia is inevitable, when it’s not. Nearly half (48 percent) think it’s likely they’ll get dementia as they age; in reality about 11 percent of U.S. adults 65 and older have Alzheimer’s disease, the most common form of dementia.
“The harsh stigma dementia carries can overshadow the fact that a diagnosis is just part of a longer story, that people can continue to live meaningful lives for years to come,” says Sarah Lenz Lock, AARP senior vice president for policy and Global Council on Brain Health executive director. “We found that most adults look to their health care providers for straightforward information on dementia, showing a great opportunity for improved lines of communication when it comes to brain health.”
This straightforward information and a greater understanding of dementia can help break the stigma that surrounds the disease. Here are four reasons why you should be discussing dementia with your doctor — plus, tips for bringing it up.
A majority of adults age 40 and older said they would be likely to add brain-healthy activities into their daily lives if they knew that the activity may help them maintain their mental functioning, AARP found. These activities include:
- Engaging in mentally stimulating activities
- Eating a proper diet
- Getting enough sleep
- Managing stress effectively
- Engaging socially
- Getting regular exercise
1. Small lifestyle changes can have a big impact
If you have high blood pressure, getting it under control can help stave off cognitive impairment. Exercise is another boon for the brain — so is quality sleep and a healthy diet. In fact, up to 40 percent of dementia cases can be prevented or delayed with lifestyle changes such as these, according to the Centers for Disease Control and Prevention (CDC). And your doctor can help identify the habits to break and the activities to add to give your brain a boost.
Some good news: It doesn’t take much to move the needle, says Paul Rosenberg, M.D., professor of psychiatry and behavioral sciences at Johns Hopkins University School of Medicine and codirector of the Johns Hopkins Memory and Alzheimer’s Treatment Center. “People who are sedentary get significant benefit from starting to exercise,” and that could be a walk in the neighborhood, not necessarily a half-marathon race, he explains.
If you’ve noticed your hearing is getting worse, bring it up with your doctor. Researchers have linked hearing loss to dementia in multiple studies, which is why Lon Schneider, M.D., director of the California Alzheimer’s Disease Center, encourages adults who have difficulty hearing to “see whether hearing aids might be helpful.” All too often, people who have trouble communicating with others slip into social isolation, a long-recognized risk factor for dementia. While research is ongoing, the general consensus among experts is that hearing aids can’t hurt, and likely help reduce risk for dementia.
These lifestyle changes “are really some of our most powerful tools in the arsenal to fight the onset of cognitive decline,” says Richard Isaacson, M.D., a neurologist and director of the Alzheimer’s Prevention Clinic at Weill Cornell Medicine and New York-Presbyterian Hospital.
2. Some brain changes are a normal part of aging
AARP’s research found that 6 in 10 adults believe cognitive decline is inevitable with age. This is not the case, but there are some normal brain changes that go hand-in-hand with aging. “And it’s important to be able to know what is normal to be reassured, because these changes rarely affect what you can actually do day to day,” Rosenberg says.
A slower processing speed is one common change that’s normal. “People tend to be not as quick to process thinking, problem-solving and so forth,” Rosenberg explains. Difficulty with word retrieval is another, “particularly for words that are used less often,” he adds.
More trouble multitasking is also typical, and there’s no need to fret if you forget where you put your keys or can’t remember what you went upstairs for every now and then.
“If that’s frequent that could indicate a problem, but plenty of college kids and 30-year-olds have that kind of a deficit occasionally,” says Schneider, who is also a professor of psychiatry, neurology and gerontology at the Keck School of Medicine of the University of Southern California.
On the flip side, older adults may find that their routine memory, skills and knowledge improve with age, the CDC says. Bottom line: Your health care provider will be able to help you parse out what changes are OK and what needs a closer examination.
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3. An early diagnosis is key
If you do have dementia, there’s no upside to delaying diagnosis. The earlier you know, the more likely you are to benefit from treatments and services available. And according to AARP research, both adults and health care providers see the advantage of an early diagnosis.
Here’s why: More than 120 different therapies for the most common type of dementia are currently being tested in clinical trials, according to a recent analysis of the Alzheimer’s Association research pipeline — and most target early stages of the disease, before brain damage is more widespread.
There are also federally approved medicines that can temporarily manage some symptoms of dementia; nearly half of adults surveyed by AARP were unaware of this. In addition, on June 7, the Food and Drug Administration (FDA) approved, with much controversy, the first drug that could potentially help slow the progression of Alzheimer’s by removing amyloid plaques, a hallmark of the disease, from the brain. The controversy stems from the fact that many leading experts do not think the scientific evidence is sufficient to justify the drug’s claims or the extremely high price of $56,000 for a year’s worth of treatment. What’s more, the FDA’s approval comes with a condition: The drug’s maker has to conduct another randomized controlled trial to establish more clearly the effectiveness of the drug, which could take years to complete. Public and private insurers still have to determine what conditions patients will have meet to qualify for coverage of the drug.
Another advantage to an early diagnosis: Modifying your lifestyle, even after the disease is identified, can help slow its progression. Finding out sooner rather than later also allows people more time to plan legal and financial futures with family and friends.
“Don’t be afraid to find out. Because if you have memory problems, you usually live with them for many, many years — even decades. And what’s the point of hiding from that?” Rosenberg says. “Generally, memory problems progress very slowly; they’re like glaciers. We can’t really stop the glacier, but they move just a few inches a year. And so you have a lot of time to adjust.”
4. Your concerns may have nothing to do with dementia
A brain disorder isn’t the only thing that can cause memory loss, confusion and forgetfulness. Thyroid disease, a vitamin B12 deficiency and untreated sleep apnea, for example, can produce symptoms that mimic dementia, explains Vijay Ramanan, M.D., a neurologist at Mayo Clinic.
“These are things that can be fairly aggressively intervened upon and actually improved,” Ramanan says. “And so as physicians, we never want to miss opportunities to help our patients if there are reversible causes of cognitive impairment.”
Depression can also cause problems with cognition; medications can produce similar effects. The most common culprits are opioid painkillers, benzodiazepines (tranquilizers) and over-the-counter drugs that contain antihistamines, Rosenberg says. The American Geriatrics Society keeps an updated list of medications older adults should avoid for this reason and others.
Tips for talking to your doctor about dementia
When to talk: You can bring it up at any time — even in the absence of symptoms — but it’s especially important to raise the issue if you or a family member have noticed aspects of your memory, thinking or behavior are different than they used to be.
“And recognize that that concern doesn’t need to own you. It’s something that can be looked into to make sure that we’re doing everything we can to keep folks as good as they can be,” Mayo Clinic’s Ramanan says.
What to say: Give your health care provider a general idea of how your days are different now, compared to before.
“Are there things that you used to be able to do that you struggle with now? Getting a sense of what the biggest change is can often be very helpful as we try to triage the potential cause for the change,” Ramanan says.
Who to bring: Johns Hopkins’ Rosenberg strongly advises that people who have questions about their cognitive health bring an “informant” to their appointment. “You need another person besides yourself,” he says. A family member is ideal, he adds, because they can fill the physician in on family history as well as the patient’s history.
What to expect: Your primary care doctor will likely follow up on your concerns with some screenings. This could mean blood work or imaging tests to see if your cognitive issues are due to another disease or condition. Or your doctor may look through all of your medicines to rule out side effects from drugs.
There are also tests that assess memory, thinking and problem-solving abilities — so don’t be afraid to ask your doctor about them, says Isaacson of Weill Cornell Medicine and New York-Presbyterian Hospital. Medicare now covers a cognitive assessment for beneficiaries at the yearly wellness visit.
Rachel Nania writes about health care and health policy for AARP. Previously she was a reporter and editor for WTOP Radio in Washington, D.C. A recipient of a Gracie Award and a regional Edward R. Murrow Award, she also participated in a dementia fellowship with the National Press Foundation.