Tagged Navigating Aging

U.S. Medical Panel Thinks Twice About Pushing Cognitive Screening For Dementia

A leading group of medical experts on Tuesday declined to endorse cognitive screening for older adults, fueling a debate that has simmered for years.

The U.S. Preventive Services Task Force said it could neither recommend nor oppose cognitive screening, citing insufficient scientific evidence of the practice’s benefits and harms and calling for further studies.

The task force’s work informs policies set by Medicare and private insurers. Its recommendations, an accompanying scientific statement and two editorials were published Tuesday in the Journal of the American Medical Association.

The task force’s new position comes as concern mounts over a rising tide of older adults with Alzheimer’s disease and other dementias and treatments remain elusive. Nearly 6 million Americans have Alzheimer’s disease; that population is expected to swell to nearly 14 million by 2050.

Because seniors are at higher risk of cognitive impairment, proponents say screening ― testing people without any symptoms — is an important strategy to identify people with unrecognized difficulties and potentially lead to better care.

“This can start a discussion with your doctor: ‘You know, you’re having problems with your cognition, let’s follow this up,’” said Stephen Rao of Cleveland Clinic’s Lou Ruvo Center for Brain Health.

Opponents say the benefits of screening are unproven and the potential for harm is worrisome. “Getting a positive result can make someone wary about their cognition and memory for the rest of their life,” said Benjamin Bensadon, an associate professor of geriatric medicine at the University of Florida College of Medicine.

The task force’s stance is controversial, given how poorly the health care system serves seniors with memory and thinking problems. Physicians routinely overlook cognitive impairment and dementia in older patients, failing to recognize these conditions at least 50% of the time, according to several studies.

When the Alzheimer’s Association surveyed 1,954 seniors in December 2018, 82% said they thought it was important to have their thinking or memory checked. But only 16% said physicians regularly checked their cognition.

What’s more, Medicare policies appear to affirm the value of screening. Since 2011, Medicare has required that physicians assess a patient’s cognition during an annual wellness visit if the patient asks for a checkup of this kind. But only 19% of seniors took advantage of this benefit in 2016, the most recent year for which data is available.

Dr. Ronald Petersen, co-author of an editorial accompanying the recommendations, cautioned that they shouldn’t discourage physicians from evaluating older patients’ memory and thinking.

“There is increased awareness, both on the part of patients and physicians, of the importance of cognitive impairment,” said Petersen, director of the Mayo Clinic’s Alzheimer’s Disease Research Center. “It would be a mistake if physicians didn’t pay more attention to cognition and consider screening on a case-by-case basis.”

Similarly, seniors shouldn’t avoid addressing worrisome symptoms.

“If someone has concerns or a family member has concerns about their memory or cognitive abilities, they should certainly discuss that with their clinician,” said Dr. Douglas Owens, chair of the task force and a professor at Stanford University School of Medicine.

In more than a dozen interviews, experts teased out complexities surrounding this topic. Here’s what they told me:

Screening basics. Cognitive screening involves administering short tests (usually five minutes or less) to people without any symptoms of cognitive decline. It’s an effort to bring to light problems with thinking and memory that otherwise might escape attention.

Depending on the test, people may be asked to recall words, draw a clock face, name the date, spell a word backward, relate a recent news event or sort items into different categories, among other tasks. Common tests include the Mini-Cog, the Memory Impairment Screen, the General Practitioner Assessment of Cognition and the Mini-Mental Status Examination.

The task force’s evaluation focuses on “universal screening”: whether all adults age 65 and older without symptoms should be given tests to assess their cognition. It found a lack of high-quality scientific evidence that this practice would improve older adults’ quality of life, ensure that they get better care or positively affect other outcomes such as caregivers’ efficacy and well-being.

A disappointing study. High hopes had rested on a study by researchers at Indiana University, published in December. In that trial, 1,723 older adults were screened for cognitive impairment, while 1,693 were not.

A year later, seniors in the screening group were not more depressed or anxious — important evidence of the lack of harm from the assessment. But the study failed to find evidence that people screened had a better health-related quality of life or lower rates of hospitalizations or emergency department visits.

Two-thirds of seniors who tested positive for cognitive impairment in her study declined to undergo further evaluation. That’s consistent with findings from other studies, and it testifies to “how many people are terrified of dementia,” said Dr. Timothy Holden, an assistant professor at Washington University School of Medicine in St. Louis.

“What seems clear is that screening in and of itself doesn’t yield benefits unless it’s accompanied by appropriate diagnostic follow-up and care,” said Nicole Foster, associate director of the Center for Aging Research at Indiana University’s Regenstrief Institute.

Selective screening. “Selective screening” for cognitive impairment is an alternative to universal screening and has gained support.

In a statement published last fall, the American Academy of Neurology recommended that all patients 65 and older seen by neurologists get yearly cognitive health assessments. Also, the American Diabetes Association  recommends that all adults with diabetes age 65 and older be screened for cognitive impairment at an initial visit and annually thereafter “as appropriate.” And the American College of Surgeons now recommends screening older adults for cognitive impairment before surgery.

Why test select groups? Many patients with diabetes or neurological conditions have overlapping cognitive symptoms and “it’s important to know if a patient is having trouble remembering what the doctor said,” said Dr. Norman Foster, chair of the workgroup that developed the neurology statement and a professor of neurology at the University of Utah.

Physicians may need to alter treatment regimens for older adults with cognitive impairment or work more closely with family members. “If someone needs to manage their own care, it’s important to know if they can do that reliably,” Foster said.

With surgery, older patients who have preexisting cognitive impairments are at higher risk of developing delirium, an acute, sudden-onset brain disorder. Identifying these patients can alert medical staff to this risk, which can be prevented or mitigated with appropriate medical attention.

Also, people who learn they have early-stage cognitive impairment can be connected with community resources and take steps to plan for their future, medically and financially. The hope is that, one day, medical treatments will be able to halt or slow the progression of dementia. But treatments currently available don’t fulfill that promise.

Steps after screening. Screening shouldn’t be confused with diagnosis: All these short tests can do is signal potential problems.

If results indicate reason for concern, a physician should ask knowledgeable family members or friends what’s going on with an older patient. “Are they depressed? Having problems taking care of themselves? Asking the same question repeatedly?” said Dr. David Reuben, chief of geriatrics at UCLA’s David Geffen School of Medicine and director of UCLA’s Alzheimer’s and Dementia Care program.

A comprehensive history and physical examination should then be undertaken to rule out potential reversible causes of cognitive difficulties, implicated in about 10% of cases. These include sleep apnea, depression, hearing or vision loss, vitamin B12 or folic acid deficiencies, alcohol abuse and side effects from anticholinergic drugs or other medications, among other conditions.

Once other causes are ruled out, neuropsychological tests can help establish a diagnosis.

“If I detect mild cognitive impairment, the first thing I’ll do is tell a patient I don’t have any drugs for that but I can help you compensate for deficits,” Reuben said. The good news, he said: A substantial number of patients with MCI ― about 50% — don’t develop dementia within five years of being diagnosed.

The bottom line. “If you’re concerned about your memory or thinking, ask your physician for an assessment,” said Dr. David Knopman, a neurologist at the Mayo Clinic. If that test indicates reason for concern, make sure you get appropriate follow-up.

That’s easier said than done if you want to see a dementia specialist, noted Dr. Soo Borson, a professor emerita of psychiatry at the University of Washington. “Everyone I know who’s doing clinical dementia care says they have wait lists of four to six months,” she said.

With shortages of geriatric psychiatrists, geriatricians, neuropsychologists and neurologists, there aren’t enough specialists to handle demands that would arise if universal screening for cognitive impairment were implemented, Borson warned.

If you’re a family member of an older adult who’s resisting getting tested, “reach out privately to your primary care physician and express your concerns,” said Holden of Washington University. “And let your doctor know if the person isn’t seeing these changes or is resistant to talk about it.”

This happens frequently because people with cognitive impairments are often unaware of their problems. “But there are ways that we, as physicians, can work around that,” Holden said. “If a physician handles the situation with sensitivity and takes things one step at a time, you can build trust and that can make things much easier.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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Stalked by The Fear That Dementia Is Stalking You

Do I know I’m at risk for developing dementia? You bet.

My father died of Alzheimer’s disease at age 72; my sister was felled by frontotemporal dementia at 58.

And that’s not all: Two maternal uncles had Alzheimer’s, and my maternal grandfather may have had vascular dementia. (In his generation, it was called senility.)

So what happens when I misplace a pair of eyeglasses or can’t remember the name of a movie I saw a week ago? “Now comes my turn with dementia,” I think.

Then I talk myself down from that emotional cliff.

Am I alone in this? Hardly. Many people, like me, who’ve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented.

Judith Graham (left) with her sister, Deborah.(Courtesy of Judith Graham)

The lack of a cure or effective treatments only adds to the anxiety. Just this week, news emerged that another study trying to stop Alzheimer’s in people at extremely high genetic risk had failed.

How do we cope as we face our fears and peer into our future?

Andrea Kline, whose mother, as well as her mother’s sister and uncle, had Alzheimer’s disease, just turned 71 and lives in Boynton Beach, Florida. She’s a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.

“I worry about dementia incessantly. Every little thing that goes wrong, I’m convinced it’s the beginning,” she told me.

Because Kline has had multiple family members with Alzheimer’s, she’s more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn’t mean this condition lies in her future. A risk is just that: It’s not a guarantee.

The age of onset is also important. People with close relatives struck by dementia early — before age 65 — are more likely to be susceptible genetically.

Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimer’s diagnosis in 1999 and passed away in 2007 at age 80. “I try to eat very healthy. I exercise. I have an advance directive, and I’ve discussed what I want [in the way of care] with my son,” she said.

“Lately, I’ve been thinking I should probably get a test for APOE4 [a gene variant that can raise the risk of developing Alzheimer’s], although I’m not really sure if it would help,” Kline added. “Maybe it would add some intensity to my planning for the future.”

I spoke to half a dozen experts for this column. None was in favor of genetic testing, except in unusual circumstances.

“Having the APOE4 allele [gene variant] does not mean you’ll get Alzheimer’s disease. Plenty of people with Alzheimer’s don’t have the allele,” said Mark Mapstone, a professor of neurology at the University of California-Irvine. “And conversely, plenty of people with the allele never develop Alzheimer’s.”

Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if you’re considering a test.

“Before you say ‘I have to know,’ really understand what you’re dealing with, how your life might be affected, and what these tests can and cannot tell you,” she advised.

Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimer’s at age 84 and died within a year in 2014.

Larsen is firm: She doesn’t want to investigate her risk of having memory or thinking problems.

“I’ve already planned for the future. I have a health care proxy and a living will and long-term care insurance. I’ve assigned powers of attorney, and I’ve saved my money,” she said. “Eating a healthy diet, getting exercise, remaining socially engaged — I already do all that, and I plan to as long as I can.”

“What would I do if I learned some negative from a test — sit around and worry?” Larsen said.

Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological exam. Among the domains examined over three to four hours: memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation, perception and more.

Brain scans are another diagnostic tool. CT and MRI scans can show whether parts of the brain have structural abnormalities or aren’t functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins — a marker of Alzheimer’s. Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.

A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimer’s, not all people with these proteins develop cognitive impairment.

Several experts recommend that people concerned about their Alzheimer’s risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.

“When it comes to thinking and memory, everyone is different,” said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is “very helpful” and “allows us to more carefully measure whether, in fact, significant changes have occurred” over time, he said.

Nora Super holds nieces Kylie and Lian Ascher on the couch beside Nora’s father, Bill Super, and her aunt Trudy Super.(Courtesy of Nora Super)

Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimer’s disease over the course of several years — falling, she said, “like a row of dominoes.”

One of her sisters was tested for the APOE4 genetic variant; results were negative. This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimer’s, Lewy body dementia, frontotemporal dementia and vascular dementia.

Rather than get genetic or neuropsychological tests, Super has focused on learning as much as she can about how to protect her brain. At the top of the list: managing her depression as well as stress. Both have been linked to dementia.

Also, Super exercises routinely and eats a MIND-style diet, rich in vegetables, berries, whole grains, nuts, fish and beans. She is learning French (a form of cognitive stimulation), meditates regularly and is socially and intellectually active.

According to a growing body of research, physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia. All of these factors are modifiable.

What if Super started having memory problems? “I fear I would get really depressed,” she admitted. “Alzheimer’s is such a horrible disease: To see what people you love go through, especially in the early stages, when they’re aware of what’s happening but can’t do anything about it, is excruciating. I’m not sure I want to go through that.”

Gefen of Northwestern said she tells patients that “if [cognitive testing] is something that’s going to stress you out, then don’t do it.”

Nancy Smith celebrates her 81st birthday with sons Nigel (right) and Tim Smith.(Courtesy of Nigel Smith)

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, who’s in hospice care in the Boston area with Alzheimer’s. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimer’s, she was furious. At that point, Nancy was still living in the family’s large home in Brookline, Massachusetts, which she refused to leave.

Eventually, after his mother ended up in the hospital, Smith was given legal authority over her affairs and he moved her to a memory care unit.

“Now, she’s deteriorated to the point where she has about 5% of her previous verbal skills,” Nigel said. “She smiles but she doesn’t recognize me.”

Does he want to know if something like this might lie in his future?

A couple of years ago, Smith said he was too afraid of Alzheimer’s to contemplate this question. Now he’s determined to know as much as possible, “not so much because I’m curious but so I can help prepare myself and my family. I see the burden of what I’m doing for my mother, and I want to do everything I can to ease that burden for them.”

Kim Hall, 54, of Plymouth, Minnesota, feels a similar need for a plan. Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago. Today, she resides in assisted living and doesn’t recognize most of her large family, including dozens of nieces and nephews who grew up with Hall.

Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anesthesia and an addiction to prescription painkillers. “I don’t share these, and that may work in my favor,” she said.

Still, Hall is concerned. “I guess I want to know if I’m at risk for dementia and if there is anything I can do to slow it down,” she said. “I don’t want what happened to my mother to happen to me.” Probably, Hall speculated, she’ll arrange to take a neuropsychological exam at some point.

Several years ago, when I was grieving my sister’s death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.

I knew then I wouldn’t take him up on the offer. If and when my time with dementia comes, I’ll have to deal with it. Until then, I’d rather not know.

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