Remember these words: Rose, Chair, Hand, Blue, Spoon. Draw a clock. Name as many animals as you can in one minute. What’s the date today? List words that start with the letter F. Recall the first five words.

Since the 1980s, memory tests like these, often taken with paper and pencil and scored by clinicians trained to read the results, have been the mainstay of the diagnosis of Alzheimer’s disease, a brain disorder that erodes memory and thinking, eventually leaving a person unable to perform basic tasks. The condition affects an estimated 6.7 million Americans over age 65, according to the Alzheimer’s Association.

While these symptom-based tests are very good at determining when a person’s memory and thinking aren’t normal, they’re not great at helping doctors suss out the cause of those impairments—which can include everything from vitamin and hormone deficiencies to small strokes, to tumors, to infections, to related disorders like Parkinson’s and Lewy body disease.

Symptom-based tests are cited as one reason for the failures of early amyloid-clearing drugs for Alzheimer’s. Reviews of patient data following the clinical trials for two drugs—bapineuzumab and solanezumab–found as many as one-third of patients who were enrolled didn’t have the disease they were being treated for—the buildup of sticky pieces of beta-amyloid and tau proteins in the brain, which is the hallmark of Alzheimer’s disease.

But doctors’ reliance on symptom-based testing could soon change. Under new draft guidelines for the diagnosis of Alzheimer’s disease, unveiled on Sunday at a large international gathering of physicians and researchers, these memory tests would take a backseat to biomarkers—proteins and other signals that can be detected in blood, spinal fluid, and on brain scans—that are telltale signs of the disease process unfolding in the brain.

Such tests have been available to doctors and clinical trial participants but have not been widely applied to patients in clinical practice. Now, with expensive and risky new drugs coming to market that promise to slow the progression of the disease, there’s a new urgency for improved diagnosis.

Getting the diagnosis right

“Getting the diagnosis right is absolutely critical to be able to provide these new therapies to the right patients,” said Dr. Gil Rabinovici, who directs the Alzheimer’s Disease Research Center at the University of California at San Francisco.

Dr. Rabinovici led a large study, published in 2019 in the journal JAMA, that showed just how impactful these biomarkers can be.

Over two years, researchers gave brain imaging positron emission tomography, or PET, scans that use radioactive tracers to light up deposits of beta amyloid in the brain to more than 11,000 patients diagnosed with early memory and thinking changes with an uncertain cause.

PET imaging of the brain changed the diagnosis for 35% of patients in the study—ruling out Alzheimer’s for 25% who were initially thought to have it and determining that Alzheimer’s was the cause for 10% of people whose deficits had initially been ascribed to a different cause.

“And this was in specialty memory clinics,” Rabinovici said.

The scans changed how doctors managed patients a whopping 60% of the time—typically prompting them to prescribe or discontinue memory-enhancing drugs such as donepezil, or Aricept, and memantine.

Beyond drug treatments, a biomarker-based diagnosis can also improve a patient’s quality of life, says Dr. Charlotte Teunissen, a professor of neurochemistry at Amsterdam University Medical Center.

Teunessin says emerging research shows that precise diagnosis by biomarkers leads to lower healthcare costs and less institutionalization. It keeps people at home in normal care for longer. “So it leads to less burden and also less healthcare costs,” said Teunissen, who is a co-author of the new guidelines.

Rabinovici cheered the move to a biological basis for diagnosis.

“This is a long-awaited advance for our field, where we are elevating care to start to apply some of these biomarkers that had been in the pipeline and have been in research and start to apply them to the care of patients in the real world. And I think that’s just that’s great progress,” said Rabinovici, who was not involved in the development of the new guidelines.

The amyloid PET scans Rabinovici used in his trial have been FDA approved for more than 10 years, but while Medicare covered the cost of these scans for patients enrolled in research studies, the agency declined to cover the cost of the scans for most routine clinical evaluations.

Now, with the first FDA approved medication—Leqembi—on the market, which requires evidence of beta amyloid build-up in the brain, Medicare is reportedly set to expand coverage for the amyloid PET scans that are required to see those deposits.

New blood tests to diagnose Alzheimer’s

Testing all patients suspected of having Alzheimer’s with invasive spinal taps and expensive brain scans made sense for research, but “it’s just no way to solve a mass public health problem,” said Dr. Clifford Jack, a neuroradiologist at the Mayo Clinic in Rochester, Minnesota, who studies the use of brain imaging for the diagnosis of memory disorders.

Jack is also a co-author of the new guidelines which are being developed on behalf of the Alzheimer’s Association and the National Institute on Aging. They were presented Sunday at the Alzheimer’s Association International Conference 2023, which is being held in Amsterdam.

They build on 2018 guidelines for diagnosing Alzheimer’s in patients participating in clinical trials. They mark the first updates to the type of diagnosis used in clinical care since 2011.

After the proposed guidelines are presented, they will be posted on the Alzheimer’s Association website for public comment for 30 days. After the public comment period, the study authors will revise them again and resubmit them for approval, which could come by the end of the year, Jack said.

“We’re updating these criteria to modernize them to the modern era, where it is completely feasible to diagnose the disease biologically at a mass scale,” Jack said, “And two, there’s something you can actually do about the disease.”

For the first time, the guidelines will direct doctors to use blood tests to detect signs of Alzheimer’s in the brain. Research shows these blood tests which have been developed alongside powerful new amyloid and tau-clearing therapies, are now nearly as accurate gold-standard tests for measuring Alzheimer’s proteins in spinal fluid.

“In head-to-head comparisons, they’re basically equivalent,” Jack said.

While some of these blood tests are available to doctors now through specialized labs that analyze them, none of them has yet received FDA approval, though Dr. Constantine Lyketsos, director of the Memory and Alzheimer’s Treatment Center at Johns Hopkins, expects some will clear that hurdle within the next year.

“It’s a huge advance,” Rabinovici said. “It’s something that five years ago I would have thought was science fiction that we can measure these brain proteins in the blood.”

Blood tests will do several important things, Jack said, they will make the cost of diagnosis less expensive and more easily accessible to patients who can’t easily get to specialized memory centers and specialists.

They will also allow doctors to better stage the disease, Jack said, since markers for Alzheimer’s disease show up in the blood before there’s evidence of disease on brain scans—something that will help doctors determine where a patient is in the progression of the disease.

A diagnosis of Alzheimer’s before symptoms?

The new guidelines propose a 6-stage classification where people are diagnosed first on the basis of biomarkers and later on the basis of symptoms.

If the new guidelines are adopted as proposed, a person could soon be diagnosed with Alzheimer’s Disease on the basis of abnormal blood testing alone, even without any noticeable memory loss. That would be Alzheimer’s disease, stage 1.

Jack said he knows that idea will not sit well with all of his colleagues.

“This is a big controversy in the field,” Jack said.

Right now, in order to start taking the new amyloid-clearing monoclonal antibodies, patients have to have evidence of beta-amyloid buildup in their brains, through tests of spinal fluid and brain scans. They also have to have symptoms of impaired memory and thinking that are judged to be in an early and treatable stage.

There are clinical trials now underway testing whether these drugs can stop or significantly delay the development of memory loss in people who have evidence of amyloid in their brains, but who do not yet have symptoms. The results of those trials are still a few years away.

“So in our new criteria, when we say, ‘Can Alzheimer’s disease be diagnosed in someone who is asymptomatic?’ The answer is an emphatic yes, from us,” Jack said. “Symptoms are the consequence of the disease. They’re not the definition of the disease.

Jack points to the example of type 2 diabetes. The vast majority of people who are diagnosed with diabetes on screening blood tests for fasting blood sugars don’t have any symptoms.

“Does that mean they don’t have diabetes? Because they’re not yet blind or they don’t have kidney failure? No, of course not. They have the disease,” Jack said.

Making decisions about treatment

Evidence from autopsies shows that some people with normal thinking and memory die with loads of beta-amyloid in their brains.

Jack believes eventually, everyone with beta-amyloid buildup in their brains will have impaired cognition, as long as they don’t die of something else—a broken hip followed by pneumonia; a heart attack, cancer—first.

“In older people, you can name any disease that can be diagnosed in asymptomatic people, and there will be some people who will die of other causes,” Jack said.

He says that doesn’t mean that people with Alzheimer’s disease don’t deserve a good diagnosis and good care.

For some people, going through all the steps to find out if they qualify to take the new drugs may not be worth it for the estimated benefit, which can be difficult for patients and caregivers to see or measure, said Lyketsos, at Johns Hopkins. Lyketsos noted he’s having about a dozen of these conversations each week with his patients right now, driven by curiosity about the new drugs.

He says right now, after patients demonstrate some early difficulty in thinking and memory on those paper and pencil tests, he might order some simple tests to rule out other things like vitamin deficiencies and low thyroid hormone.

If he still suspects Alzheimer’s, he talks to them about getting a spinal tap or brain scan to get a better understanding of what’s causing their symptoms.

If those tests suggest beta-amyloid may be driving their problems, he next looks at genetics—people who have a gene called APOE4, can be more vulnerable to dangerous brain swelling while taking monoclonal antibodies to clear amyloid.

Doctors also have to see if patients need other medications—such as blood thinners for atrial fibrillation—that might further complicate the use of amyloid-clearing drugs.

Finally, while people may have biomarkers for Alzheimer’s disease, it may not be the only condition causing their dementia. A brain MRI scan would be needed, Jack said, to rule out other problems like bleeding in the small blood vessels of the brain or other types of memory-stealing disorders.

“And the patient would then be presented with a choice,” Jack said. “You know, we could do all this screening assessment. And if everything looks good, you can go on treatment. Or maybe you’re just not interested in the screening assessment, and we’ll skip the whole thing. So that’s how that’s how it’s going to have to work for patients right now,” he said.

Rabinovici said there is increased interest in from patients in getting a diagnosis and doing it earlier than they might have before.

“I think for many years, people had a bit of a nihilistic approach, including doctors about diagnosing Alzheimer’s because they felt like there was little that we could offer patients and families,” he said, noting that he didn’t agree with that. He thinks any information that can help patients plan and guide their care is valuable.

“But now that we actually have therapies… I think that will really catalyze the field and elevate care,” Rabinovici said.

Meg Tirrell contributed reporting

NASHVILLE, Tenn.  — An art museum in Tennessee has partnered with the Alzheimer's Association to provide people living with dementia and their care partners to experience art together.

When health is only getting worse for the people we love most, caregiving can be an overwhelming job. There are places looking to give something to those caring families.

Something Judith Plummer loves to share is that she has a great mom.

"My mom's name is Jane Smith," she smiled. "She worked until age 70 as a child care center director here in Nashville where she did art and especially music. She's always been involved in the creative arts."

In fact, when Judith was a little girl, Jane took her everywhere. There were trips to the old Children's Museum, to the Hermitage, to the state capital.

"I was three years old and got to sit in the governor's chair!" Judith laughed.

"I noticed she was going downhill and having cognitive deficits," Judith continued, referring to her mother. "Then, in the last few years, it's been much more pronounced."

Jane has a form of dementia.

In just the way her great mom took Judith everywhere, Judith is now returning the favor.

The Frist Art Museum is partnered with the Alzheimer's Association to offer people living with dementia and their care partners free tours of an exhibit.

Anne Henderson of the Frist said this happens quarterly throughout the year in what's called the Making Memories program.

"It's about offering stimulation to people who have dementia of some form," she said. "The opportunity to come to the Frist is to have that exposure to go back to what memories people with dementia may have. Works of art can help create those connections. They might remember a sound. They might remember a story or connect with a story."

Included in this are art and music therapy. People make art while listening to music.

"Both the caregiver and the person doing the care can become so isolated, especially when dementia and Alzheimer's are involved," said Judith. "I make sure she gets art enrichment, and music therapy."

To see her mom making art again, to be around others making art, means a lot to Judith.

"She always had these interests all her life, and now they're being presented to her in a way someone with dementia can absorb and appreciate," said Judith.

She said a day like this is another 'thank you' to someone she'll forever know as a great mom.

For more on the Making Memories program, visit here.

Forrest Sanders at WTVF first reported this story.

U.S. officials granted full approval to a closely watched Alzheimer’s drug on Thursday, clearing the way for Medicare and other insurance plans to begin covering the treatment for people with the brain-robbing disease.

The Food and Drug Administration endorsed the IV drug, Leqembi, for patients with mild dementia and other symptoms caused by early Alzheimer's disease. It’s the first medicine that’s been convincingly shown to modestly slow the cognitive decline caused by Alzheimer's.

Japanese drugmaker Eisai received conditional approval from the FDA in January based on early results suggesting Leqembi worked by clearing a sticky brain plaque linked to the disease.

The FDA confirmed those results by reviewing data from a larger, 1,800-patient study in which the drug slowed memory and thinking decline by about five months in those who got the treatment, compared to those who got a dummy drug.

“This confirmatory study verified that it is a safe and effective treatment for patients with Alzheimer’s disease," said FDA's neurology drug director, Teresa Buracchio, in a statement.

The drug's prescribing information will carry the most serious type of warning, indicating that Leqembi can cause brain swelling and bleeding, side effects that can be dangerous in rare cases. The label notes that those problems are seen with other plaque-targeting Alzheimer's drugs.

The process of converting a drug to full FDA approval usually attracts little attention. But Alzheimer’s patients and advocates have been lobbying the federal government for months after Medicare officials announced last year they wouldn’t pay for routine use of drugs like Leqembi until they receive FDA’s full approval.

There were concerns that the cost of new plaque-targeting Alzheimer's drugs like Leqembi could overwhelm the program's finances, which provide care for 60 million seniors. Leqembi is priced at about $26,500 for a year’s supply of IVs every two weeks.

The vast majority of Americans with Alzheimer’s get their health coverage through Medicare. And private insurers have followed its lead by withholding coverage for Leqembi and a similar drug, Aduhelm, until they receive FDA's full endorsement. An FDA decision on full approval for Aduhelm is still years away.

Medicare administrator, Chiquita Brooks-LaSure, said in a statement Thursday the program will begin paying for the drug now that it has full FDA approval. But the government is also setting extra requirements, including enrollment in a federal registry to track the drug's real-world safety and effectiveness.

Video below: How your diet possibly contributes as a risk factor for Alzheimer's

Medicare “will cover this medication broadly while continuing to gather data that will help us understand how the drug works,” Brooks-LaSure said.

Some Medicare patients could be responsible for paying the standard 20% of the cost of Leqembi, though the amount will vary depending on their plans and other coverage details.

Hospitals and medical clinics have also cautioned that it may take time to get people started on the drug.

Doctors need to confirm that patients have the brain plaque targeted by Leqembi before prescribing it. Nurses need to be trained to administer the drug and patients must be monitored with repeated brain scans to check for swelling or bleeding. The imaging and administration services carry extra costs for hospitals beyond the drug itself.

Eisai has told investors that about 100,000 Americans could be diagnosed and eligible to receive Leqembi by 2026. The drug is co-marketed with Cambridge, Massachusetts-based Biogen.

“We want to ensure that appropriate patients only are the ones that get this product,” said Alexander Scott, a vice president with Eisai.

Eisai studied the drug in people with early or mild disease who were evaluated using a scale measuring memory, thinking and other basic skills. After 18 months, those who got Leqembi declined more slowly — a difference of less than half a point on the scale — than participants who received a dummy infusion. Some Alzheimer's experts say that delay is likely too subtle for patients or their families to notice.

But federal health advisers said the difference could still be meaningful and recommended that FDA fully approve the drug at a public meeting in June.

New research hints that even a simple exercise routine just might help older Americans with mild memory problems.

Doctors have long advised physical activity to help keep a healthy brain fit. But the government-funded study marks the longest test of whether exercise makes any difference once memory starts to slide — research performed amid a pandemic that added isolation to the list of risks to participants' brain health.

Researchers recruited about 300 sedentary older adults with hard-to-spot memory changes called mild cognitive impairment or MCI -- a condition that’s sometimes, but not always, a precursor to Alzheimer’s. Half were assigned aerobic exercises and the rest stretching-and-balance moves that only modestly raised their heart rate.

Another key component: Participants in both groups were showered with attention by trainers who worked with them at YMCAs around the country -- and when COVID-19 shut down gyms, helped them keep moving at home via video calls.

After a year, cognitive testing showed overall neither group had worsened, said lead researcher Laura Baker, a neuroscientist at Wake Forest School of Medicine. Nor did brain scans show the shrinkage that accompanies worsening memory problems, she said.

By comparison, similar MCI patients in another long-term study of brain health -- but without exercise -- experienced significant cognitive decline over a year.

Those early findings are surprising, and the National Institute on Aging cautioned that tracking non-exercisers in the same study would have offered better proof.

But the results suggest “this is doable for everybody” -- not just seniors healthy enough to work up a hard sweat, said Baker, who presented the data Tuesday at the Alzheimer's Association International Conference. ”Exercise needs to be part of the prevention strategies" for at-risk seniors.

Previous research has found regular physical activity of any sort may reduce damaging inflammation and increase blood flow to the brain, said Alzheimer’s Association chief scientific officer Maria Carrillo.

But the new study is especially intriguing because the pandemic hit halfway through, leaving already vulnerable seniors socially isolated -- something long known to increase people’s risk of memory problems, Carrillo said.

It’s a frustrating time for dementia research. Doctors are hesitant to prescribe a high-priced new drug called Aduhelm that was supposed to be the first to slow the progression of Alzheimer’s -- but it’s not yet clear if it really helps patients. Researchers last month reported another drug that works similarly -- by targeting amyloid plaques that are an Alzheimer’s hallmark -- failed in a key study.

While amyloid clearly plays a role, it's important that drugmakers increasingly are targeting many other factors that can lead to dementia, Carrillo said, because effective treatment or prevention likely will require a combination of customized strategies.

One example of a new approach: Sometimes in dementia, the brain has trouble processing blood sugar and fats for the energy it needs, John Didsbury of T3D Therapeutics told the Alzheimer's meeting. His company is testing a pill that aims to rev up that metabolism, with results expected next year.

Meanwhile, there’s growing urgency to settle whether steps people could take today -- like exercise -- might offer at least some protection.

How much and what kind of exercise? In Baker’s study, seniors were supposed to get moving for 30 to 45 minutes four times a week, whether it was on a vigorous turn on the treadmill or the stretching exercises. That’s a big ask of anyone who’s sedentary, but Baker said MCI’s effects on the brain make it even harder for people to plan and stick with the new activity.

Hence the social stimulation — which she credited with each participant completing over 100 hours of exercise. Baker suspects that sheer volume might explain why even the simple stretching added up to an apparent benefit. Participants were supposed to exercise without formal support for an additional six months, data Baker hasn't yet analyzed.

“We wouldn’t have done the exercise on our own,” said retired agriculture researcher Doug Maxwell of Verona, Wisconsin, who joined the study with his wife.

The duo, both 81, were both assigned to the stretching classes. They felt so good afterward that when the study ended, they bought electric bikes in hopes of even more activity -- efforts Maxwell acknowledged are hard to keep up.

Next up: Baker is leading an even larger study of older adults to see if adding exercise to other can’t-hurt steps such as a heart-healthy diet, brain games and social stimulation together may reduce the risk of dementia.

A highly-anticipated Alzheimer's treatment is expected to become available this month. However, experts warn that accessibility will likely be a problem.

Lecanemab is the first treatment that appears to slow the progression of Alzheimer's disease. It's only for people in the early stages of cognitive decline.

Lecanemab is an infusion given every two weeks. It's estimated to cost $25,000 a year.

Those not wealthy or those not in clinical trials are expected to be left out.

"Another barrier to access stems from the fact Lecanemab is on accelerated FDA approval," said Dr. Michael Weiner.

He expects the FDA to announce whether the drug gets full approval later this year. If it is fully approved, the Center for Medicare Services will decide whether to cover it.

Once a drug is approved for Medicare, some insurance will pay for it and it is available through the Department of Veterans Affairs.

"I think those of us in the field, who see these patients and know what's going on and see the effects of this treatment, think that this treatment should definitely be available to the population, and we ought to try to find a way to pay for i.," Weiner said.

In clinical trials, the drug has been shown to slow cognitive decline by about 25%. Weiner said that could mean six to nine months of independence for patients and caregivers.

Alzheimer’s disease is a complicated condition, and experts are still trying to figure out why some people develop it while others don’t. Now, a new study suggests that what you eat can play a role in your risk of developing Alzheimer’s — and two diets in particular may help lower your chances of developing the devastating disease.The study, which was published in the journal Neurology, examined the brains of more than 580 people who donated their body to Rush University’s Memory and Aging Project, which has been collecting annual dietary information and doing annual check-ups on study participants since 2004. The study analyzed data on the dietary habits of participants from 2014 through 2020 or 2021, and compared that with the number of plaques and tangles that were in each person’s brain during an autopsy.Plaques and tangles, in case you’re not familiar with them, are key markers of Alzheimer’s disease. In a person who has Alzheimer’s disease, beta-amyloid proteins clump together to form plaques that collect between neurons and interfere with cell function, according to the National Institute on Aging (NIA). Tangles are an accumulation of a protein called tau that collect inside neurons and interfere with communication between neurons, the NIA says.The researchers discovered that people who had eating patterns that closely followed the MIND or Mediterranean diets had almost 40% lower chances of developing Alzheimer’s disease than others.The researchers specifically found that green leafy vegetables were the most beneficial, with brain tissue from people who ate the most leafy greens looking nearly 19 years younger in terms of plaque buildup than those who only had one or less servings of leafy greens a week.The study raises a lot of questions about diet’s role in Alzheimer’s disease, as well as why these eating plans in particular may be helpful in lowering your risk. Here’s the deal.How can diet impact a person’s Alzheimer’s risk?There are a lot of potential factors that can influence your risk of developing Alzheimer’s disease, including genetics and aging, the NIA says. As for diet, the National Institutes of Health (NIH) says that it’s possible that what you eat may influence your risk of developing Alzheimer’s disease. The NIH also points to the MIND and Mediterranean diets as being especially helpful in the prevention of Alzheimer’s disease.“We and others previously found that healthy diets are associated with reduced dementia risk and better cognitive function in an aging population,” says lead study author Puja Agarwal, Ph.D., an assistant professor of internal medicine at the Rush University Medical Center in Chicago. What the latest study shows is that diet may be directly related to the formation of plaques and tangles in the brain, Agarwal says.“The exact mechanism of how diet and plaques and tangles relate needs further investigation and we speculated that there might be other mechanisms through which diet may impact the risk for Alzheimer’s disease,” she says.And, at a basic level, you are what you eat, says Amit Sachdev, M.D., M.S., medical director in the Department of Neurology at Michigan State University. “Diet is a metric for overall wellness,” he says. “In general. healthy body means healthy brain.”Why might the MIND and Mediterranean diets lower your risk of developing Alzheimer’s?Again, this is still being explored. However, there are some theories.“One of the proposed mechanisms is that both the MIND and the Mediterranean are plant-based diets rich in various essential nutrients and bioactive compounds that are required to maintain brain health,” Agarwal says. “They also have antioxidant and anti-inflammatory properties which may help prevent amyloid burden and neuronal loss.”Dr. Sachdev agrees that the diets’ anti-inflammatory properties may play a role. “Some diets are better at controlling body-wide inflammation,” he says. “Unfortunately, the typical starch-heavy American diet is not a great choice.” However, he says, the Mediterranean and MIND diets “balance styles of food and portion size in a way that reduces overall burden of body inflammation.”Dr. Sachdev also notes that the Mediterranean diet in particular is linked to blood vessel health. “When we think of Mediterranean diet, we think of the health of blood vessels in the brain and reducing strokes. There is strong evidence for this,” he says. Research has also found that blood vessel issues are linked to an increased risk of Alzheimer’s.Mediterranean diet basicsThe Mediterranean diet is based on the lifestyles of people who live in the Mediterranean region, which includes Greece, Italy, and Spain, explains Jessica Cording, R.D., author of The Little Book of Game-Changers. It focuses on high intakes of vegetables, legumes, fruits, nuts, grains, fish, seafood, extra virgin olive oil, and some red wine. The diet also encourages followers to limit red meat, Cording says.“The Mediterranean diet is designed to be a lifestyle,” Cording says, noting that people on the diet are also encouraged to be active. Research has linked the Mediterranean diet with good heart health, optimal blood sugar levels, and a lowered risk of dementia.MIND diet basicsThe MIND diet (which stands for Mediterranean–DASH Intervention for Neurodegenerative Delay) is a form of the Mediterranean diet that focuses on plant-based foods linked to dementia prevention, according to the NIA. It specifically encourages people to eat from these food groups:Leafy green vegetables, at least six servings/weekOther vegetables, at least one serving/dayBerries, at least two servings/weekWhole grains, at least three servings/dayFish, one serving/weekPoultry, two servings/weekBeans, three servings/weekNuts, five servings/weekWine, one glass/dayOlive oil

Brad Stolz cherishes every moment he has with his 92-year-old grandmother, Marion. She’s been diagnosed with Alzheimer’s disease.

“Bradley, I love him," Marion said. "The best grandson ever. Well, they're all good.”

Alzheimer's is a type of dementia that affects memory, thinking and behavior. Stolz says he tries to visit his grandmother whenever he gets the chance.

“Dementia gets a lot worse when they don't interact with people," Stolz said. "I saw that with another grandparent of mine where he was very isolated just because of the circumstances and kind of where he ended up being later in life. And he declined very quickly.”

Social isolation among older people was already a problem before the pandemic. COVID-19 has only made the situation worse.

Farhana Ferdous, who is an assistant professor at Howard University, recently released a report that analyzes the impact of COVID-19-related social distancing requirements on older adults living in long-term care facilities.

“There has been a growing body of research about the social isolation and how it is associated with anxiety, depression and faster cognitive decline,” Ferdous said.

She calls social isolation a public health threat that increases a person’s risk for dementia by 40%. Jim Herlihy with the Alzheimer’s Association of Colorado says a person's quality of life is significantly better when those with dementia have social interaction.

“The people who have been isolated, we've heard from their loved ones who said, ‘I've seen my mom or my dad decline faster than I've ever seen them,'" Herlihy said. "And it becomes a spiral.”

That’s one reason why Memories in the Making was created. Herlihy says Memories in the Making is designed to help people with dementia recreate memories through watercolor painting.

“Drawing and art taps into parts of the brain that are still more active than maybe the verbal centers and gives people a chance to tap into memories and express themselves and give them a way to communicate,” Herlihy said.

Kelly Nixon has led the class as an administrator at her facility for six years.

“Once they start that process of painting something, you can generally pull a memory from what they're painting,” Nixon said.

Although the classes were put on hold in the thick of the pandemic, Nixon says she continued with one-on-one sessions.

“But a one-on-one isn't the same as them being together," Nixon said. "Being with each other is really what it's all about to get those memories and to share those memories with everybody.”

Nixon says she loves seeing friendships build through the class.

“You can really see the anxiety lift off of people by being around people that are of that same mindset,” Nixon said.

"The social aspect, I think, definitely helps to keep her sharp and keep her engaged on a day-to-day basis,” Stolz said.

Because of his past experience with his grandfather, Stolz says his family didn’t let the pandemic keep them from visiting Marion. He says he’s happy to see his grandmother is in good hands.

“I was thrilled when I got here to see that she, not only is she, you know, being a part of it, but she's actually enjoying herself and, you know, enjoying the conversation and sort of putting some of her thoughts and ideas on paper,” Stolz said.

 

Police in Connecticut have arrested a woman they say stole hundreds of thousands of dollars from her husband over two decades by convincing him that he had Alzheimer's disease.

According to The Associated Press, WVIT-TV in New Britain, Connecticut and Patch, 63-year-old Donna Marino turned herself in Wednesday and was charged with first-degree larceny and third-degree forgery.

The East Haven Police Department alleges that Marino first began stealing from her husband in 1999. The department alleges that Marino would forge her husband's signature on pension, social security and worker's compensation checks and then deposit that cash into a secret bank account.

In addition to re-routing his checks, Marino also allegedly pawned some of her husband's jewelry and rare coins without his consent, WVIT reported.

As part of her alleged plot, police allege that Marino had convinced her husband that he was suffering from Alzheimer's disease.

"She believed that convincing him that he had Alzheimer's disease would prevent him from going to the bank, ultimately, to discover the low balances on his accounts," Police Capt. Joseph M. Murgo said, according to Patch.

In addition to convincing her husband about a false Alzheimer's diagnosis, The Associated Press reports that Marion also allegedly enlisted a friend, a notary public, to sign off on a legal document that granted her power of attorney of her husband.

All told, police believe Marino stole about $600,000 from her husband over the years.

According to police, Marino's husband first realized his wife was stealing from him in 2019. After taking time to "consider his options, he decided to file a formal complaint" in March 2020.

Marino is currently being held in jail on a $25,000 bond.

The Davis family likes to reminisce in photos of their world travels. Carrie Davis is the daughter of Jim and Paula Davis. They call themselves the three musketeers because they’ve traveled to nearly all the continents together. However, their wings were recently clipped after Jim was diagnosed with Alzheimer’s.

“What are some of your hobbies?" Carrie asked her father.

"Hobbies...," Jim contemplated before Carrie helped refresh his memory with some charades of herself fishing.

"Fly fishing," Jim said. "There we go. Thank goodness. I would have forgotten that I was doing that.”

Alzheimer’s is a degenerative disease of the brain that affects memory, awareness, social conversation and speech. According to the Alzheimer’s Association, more than 6 million Americans are living with Alzheimer’s.

Carrie and Paula say they’ve noticed some drastic differences in what Jim can remember, but his humor still shines through.

“You heard the gorgeous part, didn't you?" Jim said. "She was talking to me."

They say they need to embrace who he is today, celebrating the fact that he is always very present. Humor is what gets them through difficult times. And even though they’re aware his Alzheimer's will continue to get worse, they’re hopeful Jim can make a difference for future generations.

Jim has been involved in two clinical trials since his diagnosis. Dr. Jack Klapper from Mile High Research Center is his neurologist.

“We've been all-in on the trials because, I mean, in my thought, what is there to lose?" Carrie said.

Carrie and Paula say they want to encourage other families dealing with Alzheimer’s to get involved since it impacts so many people and is a devastating disease that’s often inherited.

“In the five years that we've been doing these trials, we've never missed one appointment," Paula said. "He's committed. I'm committed. I am really committed, because you can't take this lightly.”

Significant progress has been made in recent years regarding Alzheimer’s research. A treatment called Aduhelm was approved by the FDA in June of this year. Kristen Clifford is a chief program officer for the Alzheimer’s Association.

“Aduhelm is the newly approved treatment for mild cognitive impairment due to Alzheimer's and mild Alzheimer's dementia," Cllifford said. "The Alzheimer's Association welcomes the accelerated approval from the FDA at the helm, as this is the first treatment that addresses the underlying biology of the disease and not just the disease symptoms.”

However, the treatment has come with some controversy. It is not covered by insurance. Some families are hesitant to pay for a treatment that they fear will not be effective and some doctors remain skeptical.

“A lot of my fellow neurologists and Alzheimer's doctors are probably not going to use it, because they didn't think it was that good,” Dr. Klapper said.

Nonetheless, the Alzheimer’s Association stresses that Aduhelm has FDA approval. The nonprofit encourages patients to have informed conversations with their healthcare professionals.

“The Alzheimer’s Association is dedicated to eliminating barriers to make sure that anyone who could potentially benefit from the treatment does have access to it,” Clifford said.

One thing everyone can agree on is optimism that we are making great progress in the treatment of Alzheimer’s.

“I think we will end up at some point like we are today with AIDS that we might have multiple drugs combined into one injection as a treatment, not just one thing, but maybe two or three different things," Dr. Klapper said.

For now, Paula and Kristen are appreciating every day they have Jim.

“He’s not doing very well, but he's happy," Paula said. "That's the one thing I am so grateful for. You can see that he's happy.”

And they're still getting in laughs whenever they can.

“When we meet someone, I say, 'Hey, just so you know, my dad has Alzheimer's,'" Carrie said. "And he usually says..."

"I do?” Jim said.

For 18 months, we’ve been hearing about COVID-19 symptoms impacting the brain. In fact, research has shown that 1 in every 3 people that gets the virus has some sort of mental health or neurological disorder after.

Now, new research is unveiling a troubling connection between Alzheimer's, the progressive disease that destroys a person’s memory and mental functions, and COVID-19.

"We're actually seeing some changes in the underlying biology that's associated with Alzheimer’s," said Dr. Heather Snyder, vice president of Medical & Scientific Relations for the Alzheimer’s Association.

Dr. Snyder says researchers with an international consortium have found similar impacts on the brain that Alzheimer’s leaves behind--like brain inflammation--in some COVID-19 patients that leads to lasting cognitive impairment.

Simply put: what COVID has done in some patients’ brains is the same thing Alzheimer’s does. These symptoms seem to be happening in patients 60 and above.

"Now exactly how viruses are playing a role in the brain, you know, we don't know if it's a direct or an indirect, is it, are they getting into the brain? That's been a big question in the scientific community, but it may not matter so much in that we are seeing that there is in some people, this relation," said Dr. Snyder.

The "why" in this equation has still not been determined, but Dr. Snyder says that it may have something to do with damage to the immune system, which can damage the brain’s blood barrier – the defense that keeps it safe.

"Certainly, COVID is spread as a respiratory illness, but there are special problems that COVID causes that other respiratory illness does not," said neurologist Dr. Olav Jaren, from Overlake Hospital in Washington state.

He says that even though COVID-19 is mostly associated with the lungs, many patients experience different symptoms throughout the brain and body, and researchers are just scratching the surface of truly understanding this virus.

"Perhaps we will define this differently than as a respiratory illness," said Dr. Jaren.

More than 40 countries and more than 100 institutions are continuing to research the co-relation to COVID-19 and Alzheimer’s symptoms.

Dr. Snyder says the more work being done to figure that out may unlock other mysteries surrounding Alzheimer's itself.

"Really understanding the interplay of the different biologies, whether it be our immune system, our blood-brain barrier, just as to the vascular contributions and how all of these work together. I think one of the things that I'm most hopeful about in the field is really the diversity of what's moving into the pipeline," she said.

In the meantime, physicians hope findings like these inspire others to protect themselves and others.

"Do what you can to not get COVID, so get vaccinated. If you do get COVID, have that conversation with your health care provider. Make sure you take care of your health," said Dr. Snyder.

The pandemic has brought structural racism in health care to the surface, not just through COVID-19 infections, deaths and access to care, but also within perceptions.

“We were really, really, you know, shocked to see the influence of discrimination on the perception of discrimination and on people's receipt of care,” said Carl V. Hill, Chief Diversity, Equity and Inclusion Officer at the Alzheimer's Association.

The annual Alzheimer’s Association report released Tuesday also included a look for the first time at experiences of communities of color and perspectives of the disease and dementia care.

They found two thirds of Black Americans believe it’s harder for them to get excellent care. Native Americans, Hispanic and Asian Americans have similar feelings.

“As people feel like they will be treated unfairly in a health care setting, they're less likely to go and seek care, right, and so we know that delayed diagnosis or misdiagnosis is a huge factor for the disparities that we see,” said Hill.

Diverse communities also see bias in dementia research, and many don't trust a future cure would be equal.

“So, working with organizations that represent the well-being of, for example, African Americans and Latinos, so that we can create trust you know, so we can become trustworthy and provide resources as they relate to education and awareness, or care and support, to those communities,” said Hill.

The Alzheimer’s Association is also working to improve cultural competence and diversity within health care.

African Americans and Hispanics were found to be up to twice as likely to have Alzheimer’s or another form of dementia. More than 6 million seniors are living with the disease.

LINCOLN, Neb. —

According to court documents, 80-year-old John Kotopka said he was exhausted from caring for 78-year-old Janet Kotopka who was diagnosed with the degenerative memory disease two years ago.

It was early Sunday morning when a marriage of 57 years ended in a Lincoln, Nebraska, house.

Kotopka told police he was in the living room with his wife, Janet, when he went upstairs to fully load and get his revolver, according to court documents. He then came down and shot her once in the head.

Documents state that Kotopka said he started thinking about seriously hurting her 10 days before and that.

Now police and health leaders want you to know, you are not alone, and help is available if you need to get a loved one into a memory care facility.

"They’re there, they're available and we suggest that they always look at those avenues, prior to taking drastic actions," Lincoln Police Department’s Acting Police Chief Brian Jackson said.

"Caregivers themselves can experience medical problems simply because of the stress of caring for their loved ones at home," Legacy Pointe Rehabilitation Center’s Chadd Russell said.

Russell said the biggest problem is most people don't know there are options.

"The sad reality of situations like this is many times, they're avoidable," Russell said.

Court documents said Kotopka also said he was worried about the financial responsibility of putting Janet in a nursing home.

"For people who are struggling financially, that support is available to them through the state Medicare office," Russell said.

Kotopka has been charged with first degree assault and the use of a firearm to commit a felony.

He's being held on 10% of a $500,000 bond.

Lincoln police said now that Janet has died, they are going to review the charges as they do an autopsy.

Click here to find resources for help.

Federal regulators have approved the first new drug for Alzheimer’s disease in nearly 20 years, leaving patients waiting to see how insurers will handle the pricey new treatment.

Health care experts expect broad coverage of the drug, which was approved Monday. But what that means for patients will vary widely depending on their insurance plan. In some cases, that could mean coming up with several thousand dollars to pay for what the insurer didn’t cover.

And there's no guarantee that every case will be covered.

Here’s what you need to know:

WHAT WAS APPROVED?

The Food and Drug Administration said it granted approval to a drug from Biogen based on clinical research results that seemed “reasonably likely” to benefit Alzheimer’s patients.

It’s the only drug that U.S. regulators have said can likely treat the underlying disease, rather than just manage symptoms. The new drug, which Biogen developed with Japan’s Eisai Co., did not reverse mental decline. It slowed it in one study.

The FDA’s decision came despite the conclusion of its advisory committee that there wasn’t enough evidence that the drug slowed the brain-destroying disease.

WHAT DOES IT DO?

It aims to help clear harmful clumps of a protein called beta-amyloid from the brain. The medication will be marketed as Aduhelm and is to be given as an infusion every four weeks.

WHAT WILL IT COST?

Biogen said the drug would cost approximately $56,000 for a typical year’s worth of treatment, and it said the price would not be raised for four years.

HOW WILL INSURERS COVER IT?

They will likely request some documentation first that the patient needs the drug. Many plans will require doctors to submit records and other paperwork justifying the treatment before they agree to cover it.

Insurers also will likely require pre-approval for brain scans needed to determine that the patient is a candidate for treatment, said Lance Grady of Avalere Health consultants.

He noted that some plans also may want to see the results of a scan before they decide to cover the next infusion, which could delay treatment.

IS COVERAGE GUARANTEED?

Medicare is widely expected to cover the treatment. Insurers that offer private or commercial coverage also will pay for care that doctors deem medically necessary.

That may not mean every case, though. If the treatment is proposed for a patient with advanced Alzheimer’s, and research shows the drug isn’t effective in that population, then the insurer may not pay for it.

“That happens all the time with drugs,” said Robert Laszewski, a health care consultant and former insurance executive. “Just because the FDA says its safe doesn’t mean it’s appropriate for everybody.”

WHAT WILL PATIENTS PAY?

That’s impossible to say broadly.

It can depend on the person’s coverage and their out-of-pocket maximum, which is a plan’s limit for how much a patient pays in a year for in-network care before insurance picks up the rest of the bill.

Some patients who are already receiving a lot of care may not wind up with a huge added expense from the drug before they hit that limit.

Patients who have a supplemental plan for their Medicare coverage also may wind up with few out-of-pocket costs for the drug.

Patients with Medicare Advantage coverage, which is run by private insurers, or individual health insurance could pay several thousand dollars before they hit their plan’s annual limit, depending on the plan.

“That could be very burdensome for someone, especially if a person is looking at this cost every single year, and they don’t have an option to get a better health plan,” said Stacie Dusetzina, an associate professor at Vanderbilt University and drug pricing expert. “It can add up.”

ARE THE DRUGMAKERS HELPING?

Cambridge, Massachusetts-based Biogen plans to begin shipping millions of doses within two weeks.

The company says it will help patients figure out their options for financial assistance and find providers and care infusion sites. The drugmaker also is offering programs to help reduce the out-of-pocket cost for some patients with commercial coverage.

But people with Medicare and Medicare Advantage coverage cannot get drugmaker discounts like that. Health care researchers say most of the people who will need this drug will have some form of Medicare coverage.

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Follow Tom Murphy on Twitter: @thpmurphy

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education. The AP is solely responsible for all content.

The Food and Drug Administration on Monday approved the use of the experimental drug aducanumab for early phases of Alzheimer's disease — despite an FDA advisory committee concluding last year that there is not enough evidence to support the effectiveness of the treatment.

The drug was developed for patients with mild cognitive impairment, not severe dementia, and intended to slow progression of Alzheimer's disease — not just ease symptoms.

The FDA has not approved a new Alzheimer's drug in nearly 20 years.

'We have to really temper expectations'

In November, the FDA's Peripheral and Central Nervous System Drugs Advisory Committee was asked to vote on several questions about evidence of the drug's effectiveness. In response to a question about whether it was reasonable to consider data from one positive study as the primary evidence of aducanumab's effectiveness for the treatment of early Alzheimer's disease, none of the committee members voted yes — 10 voted no and one was uncertain.

The committee's opinions were then left with the FDA as the agency mulled whether to approve the drug or pump the brakes.

The pharmaceutical company Biogen and its Japanese partner Eisai developed aducanumab, administered through intravenous infusion to treat early Alzheimer's disease. The drug was developed for patients with mild cognitive impairment, not severe dementia.

"This drug targets the earliest symptomatic phase of the disease, called mild cognitive impairment due to Alzheimer's. Treatment of this pre-dementia period is what the FDA is deciding on," Dr. Richard Isaacson, director of the Alzheimer's Prevention Clinic at Weill Cornell Medicine and NewYork-Presbyterian in New York, who had patients in the original aducanumab clinical studies, told CNN.

"We have to really temper expectations and explain to people that this drug is meant for the earliest symptomatic phases," he added. "It pains me to say this but if I have a severe Alzheimer's patient that can no longer speak or interact much with others and their family member is begging me to give them this drug, I won't be able to do it."

Controversy and high price tag

Aducanumab's road to seeking FDA approval has been rocky — and controversial.

In March 2019, Phase 3 clinical trials of aducanumab were discontinued because a futility analysis found the trials were unlikely to meet their primary goals at completion.

"The futility analyses showed the studies were most likely to fail," said Isaacson of the Alzheimer's Prevention Clinic at Weill Cornell Medicine and NewYork-Presbyterian.

Several months later, Biogen announced that a new analysis, which included more patients, showed that those who received high doses aducanumab experienced a reduction in clinical decline in one trial.

The company noted in FDA briefing documents last year that patients treated with high-dose aducanumab showed 22% less clinical decline in their cognitive health at about 18 months — meaning the progression of their early Alzheimer's disease slowed — compared with those who received a placebo.

Results for some patients in another study supported those findings, as well.

"Now the messaging was like, 'Wait a minute. It worked, and it especially works if you pull all the high dosages from the two studies,'" Isaacson said. "Because it would take years to repeat a study, and considering the lack of available therapies to treat the pre-dementia phase, the company made an uncharacteristic decision — to still apply to the FDA."

In July 2020, Biogen completed its submission to the FDA for a Biologics License Application for approval of the drug.

Since then, Alzheimer's disease researchers, doctors and patients have been waiting for the FDA's decision.

Some groups, including the nonprofit Public Citizen's Health Research Group, argued that the FDA should not approve aducanumab for treatment of Alzheimer's disease due to lack of evidence of its effectiveness.

In April, the nonprofit wrote a letter to Secretary of Health and Human Services Xavier Becerra asking the department's Office of Inspector General to investigate the "close collaboration" between FDA and Biogen regarding the company's application for approval of aducanumab.

There have also been concerns around cost.

In May, the Institute for Clinical and Economic Review released a draft report estimating that the drug should cost between $2,560 to $8,290 per year — not up to $50,000 based on market analyst estimates — and noted that "the evidence is insufficient to conclude that the clinical benefits of aducanumab outweigh its harms or, indeed, that it reduces progression" of Alzheimer's disease.

Other organizations, such as the Alzheimer's Association, have supported approval of the drug.

On Friday, the Alzheimer's Association's website said, "Whatever the final decision by the FDA, this is an important moment. We have never before been this close to approval of a medication for Alzheimer's that could change the progression of the disease, not just the symptoms. Together, we can continue working toward our vision of a world without Alzheimer's and all other dementia."

There has been so much attention around the drug that Washington University's Knight Alzheimer Disease Research Center in St. Louis issued a statement on Friday noting that if the drug is approved, "it will still likely take several months for the medication to pass other regulatory steps and become available to patients."

'The infusion gives us the basis for hope'

For those with mild cognitive impairment and their families, the drug had given hope.

Jenny Knap, 69, has received infusions of the aducanumab drug for about a year now as part of clinical trials in two six-month stretches. She told CNN that she underwent treatment for about six months before the study was put on hold in 2019, and then continued treatment about six months ago.

"I can't say if I noticed it on a daily basis, but I do think overall, I'm doing much better in terms of looking for where my glasses are — things like that," Knap said.

In 2015, when Knap was diagnosed with mild cognitive impairment, a clinical precursor of Alzheimer's disease, the signs of the condition were subtle, but they were there.

She often would misplace her glasses or she would repeat herself, forgetting conversations from moments ago, her husband, Joe Knap, said.

As these occurrences became more frequent, "we were aware that things were starting to slip through the cracks," Joe said.

Jenny visited the Cleveland Clinic's Lou Ruvo Center for Brain Health in Ohio for testing and received her diagnosis. Then a couple of years later, in early 2017, Jenny learned that she was eligible to participate in clinical trials for the Biogen drug aducanumab at the Cleveland Clinic. She signed up to volunteer — and has been in the trial ever since.

"It turned out that for the first year and a half Jenny was in the placebo category," Joe said, which means she did not receive the treatment.

The trial was blind so they did not know she was in the placebo group until recently. As the study went on, Joe said that she was later given the drug around August 2018 and continued until February 2019. Biogen suspended the trial in March 2019, but it then resumed last fall and Jenny began receiving infusions again.

Now, every four weeks, with Joe by her side, Jenny receives aducanumab infusions at the Cleveland Clinic, which is about a half-hour drive from their home. Even though she just recently started treatment, Jenny said that she thinks it has been helping some, along with maintaining a healthy diet and exercising regularly — she goes on 4-mile runs.

"Aducanumab's promise is to slow down the progression of the disease and not to improve the cognition. In her case, we did not appreciate any major decline," Dr. Babak Tousi, Jenny's doctor who led aducanumab clinical trials at the Cleveland Clinic site, wrote in an email to CNN.

"This treatment is very different than what we have had before. We have never had a medication that would slow down Alzheimer's disease progression," he said. "Current available medication such as donepezil or memantine only help modestly with the symptoms but do not slow down the disease's progression."

Jenny said that she has not experienced any noticeable side effects of the drug.

"At one point, it was a while back, there was evidence of some very slight bleeding in the brain. It was actually very low levels," Joe said about Jenny, but he added that doctors were not concerned.

Tousi noted in his email that with continued treatment, "blood vessels may become leaky so fluid and red blood cells may leak out to surrounding area" and these "micro hemorrhages have been reported in 19.1% of participants of the trial who received" the maximum dose of treatment.

So far, the infusions and maintaining a healthy lifestyle have given Jenny and Joe a more "upbeat" outlook on the future, Joe said. They were also happy to participate in the trial — an effort to make a helpful difference in the lives of others.

"Before we got into the clinical trial, there was this fear of what lay ahead," Joe said. "The medical component of the infusion gives us the basis for hope. But then the exercise on a daily basis gives us immediate positives."

CNCINNATI — Linda Hayes said the hardest thing she's ever done is place her husband, Bob, in a nursing home, knowing he will probably never come home again.

Her husband of 47 years suffers from Lewy Body Dementia, which causes him to hallucinate and have delusions, Hayes said. The disease can also make him angry and confrontational.

"It's just not fair," Linda Hayes said as she fought back tears. "He was the most kind, loving man you'd ever want to meet."

Courtesy of Linda Hayes

The challenge of finding the best care for her husband got harder during the pandemic, she said. She had the support of family and friends, but like many people, she was unaware that she could review detailed inspection reports for nursing homes to help inform her decision.

"No, I didn't even know to ask for that," she said.

After states banned visits for months during the pandemic, nursing homes have opened up again as they try to rebound from the worst days of the pandemic.

COVID-19 has killed nearly one out of every 10 nursing home residents, according to The COVID Tracking Project.

There's still so much many of us don't know about living conditions in local nursing homes. So, the WCPO 9 I-Team is trying to make it easier for you to get the information you need to find the best available care for your loved ones.

The I-Team has spent the last two months reviewing records for local nursing homes, including their ratings and inspection reports.

We've created interactive maps showing where you can find the highest- and lowest-rated nursing homes in the Tri-State and important information about each of those facilities.

We also interviewed advocates for nursing home residents and their families who shared key information that helps them identify quality long-term care.

Where to begin

The first step is identifying the type of care your loved one needs. Some people require skilled care, the highest level of long-term care. These facilities have around-the-clock nursing care.

People with Alzheimer's may need what's called memory care: Many people just need help with meals and basic services; those with Alzheimer's typically require assisted care.

The I-Team collected and reviewed records for facilities providing each type of care and the contact information for those facilities.

"It's important to have them close because you are going to be their biggest advocate," said Ashley Burke, an elder law attorney in the firm Burke & Pecquet in Blue Ash.

Lot Tan

Burke helped Linda Hayes with legal issues arising from the care her husband requires.

"It's not about the amenities or the decorations," Burke said. "It's about the care that the staff is providing."

A good place to start looking at quality of care is the Medicare nursing home compare website. It uses a five-star rating system. One star means the lowest rating; five stars mean the highest. It allows you to easily find facilities close to you by entering your address, then using other filters to identify nursing homes within a certain distance.

The website also provides details from federal nursing home inspections of the nursing homes, including any fines paid by the nursing homes.

The I-Team found 113 long-term care facilities within 20 miles of downtown Cincinnati. Twenty-six of them had an overall one-star rating.

Eighteen received an overall five-star rating.

The website breaks down the ratings into different categories: health inspections, staffing and quality of resident care.

The ratings provide a basic guide, but the I-Team found some nursing homes paid fines for poor resident care and still received a higher rating than facilities that had less serious violations.

One other important note: The ratings are based on previous inspections. They are not necessarily an accurate reflection of current conditions.

Still, the I-Team's investigation found the website is useful as a screening tool as part of your research on nursing home care.

Our interactive maps use data from the Medicare website. Each nursing home has a page in our database that contains a link to their individual Medicare inspection data and ratings.

We also included a link to an ongoing investigative project by nonprofit journalism organization ProPublica, which provides a rich collection of additional information about each facility, including the number of COVID-19 cases and deaths, along with actual inspection reports for the facilities.

The inspection reports are the most detailed public records available on individual nursing homes. The most serious violations are classified as "IJ" for "Immediate Jeopardy."

Inspection reports include the nursing home's response and a plan to address violations.

Visit, pay attention and ask questions

Before COVID-19, Linda Hayes said she made unannounced visits to nursing homes and requested a tour.

"That's when you really see what goes on behind the scenes," she said.

Something Linda Hayes said is most important to her is that her husband is close to her. He has lived in four different long-term care facilities, and each one has been 10-20 minutes from her home, which makes it easier for her to visit him more frequently.

"I just want him to be happy, if that's possible," she said.

Advocates for nursing home residents say regular visits lead to better care.

Zoom interview

"They're going to be able to be more involved," said Betheny Breckel, who worked as a nursing home social worker for 15 years before she became the district ombudsman for the Northern Kentucky district. "They're going to be able to see if their loved one is getting the care they're needing."

There's a Long-Term Care Ombudsman program in every state, providing guidance for families looking for nursing home care and acting as advocates for residents in those facilities.

Jodi Holsclaw, the regional ombudsman overseeing Northern Kentucky, said guests should eat meals served in the nursing home so they can see the quality of food being served.

"I always encourage families to do that," Holsclaw said. "Is it appetizing? Does it look appetizing?"

Zoom interview

Holsclaw said visitors should pay attention to details that can reveal a lot about how the staff cares for residents.

"Are there spills on the floor," Holsclaw said. "Are residents unkempt? Is their hair really long? Are their nails really long?"

Medicare publishes a nursing home checklist that can help your research, and Burke called the checklist "a good starting point."

While there is so much to consider when making such an important decision, Linda Hayes said it comes down to getting the best care you can afford as close to home as possible.

Then, share what you've learned.

"I hope it helps a lot of people," she said. "If it even helps one person, it will make me happy."

Resources

• Indiana Long-Term Care Ombudsman program

• Kentucky Long-Term Care Ombudsman program

This week on the Hear Cincinnati podcast, host Brian Niesz is joined by community reporter Lucy May and senior real-time editor Pat LaFleur to discuss racial disparities in health care, easing COVID-19 restrictions in Ohio and Kentucky, and a local teen on her way to Harvard against all odds.

Later, anchor and reporter Kristyn Hartman joins the podcast to tell the story of a local couple who were granted a storybook wedding with the help of the community after they fell in love in hospice.

Listen to this episode in the podcast player above.

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