Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (2023)

Kevin Rodrigues was great at math.

He could look at a room and tell you its square footage. Then he'd calculate precisely how much carpet, tile or other material you would need to cover it. That's what made him so good at his job selling commercial flooring ― that and his charismatic personality.

"He was like a magnet," his wife, Tina, said. "You just gravitated to him, you know? He had the most amazing smile, the greatest laugh. … He could just go into any room and just start talking to people."

Then in 2012, Kevin miscalculated a job. It wasn't like him, but he messed up the numbers. His family shouldered a significant cost.

There were more inconsistencies after that, and he failed to meet his sales expectations.

In 2014, Kevin lost his job.

He started looking for a new employer, but never really told Tina the details of what was going on. He started to misplace things, to forget why he’d gone to the store.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (1)

Tina didn't think much of it at first. A few months later, she started working at the Arizona Alzheimer's Association. She had conversations and trainings about dementia and learned about the disease's 10 warning signs: memory loss and difficulty performing familiar tasks, among others.

That's when she grew concerned. She was seeing some of those signs at home in her husband.

Figuring out whether her concerns were a reality wouldn't be easy. In some ways, Tina's occupation would mean the family had a best-case-scenario shot at getting Kevin a diagnosis and treatment if he did have Alzheimer's. But there would still be a difficult road ahead, made worse by the stigma around the disease.

As many as one in nine Americans over age 65 already have Alzheimer's disease, the most common type of dementia, according to the Alzheimer's Association. That's not including other types of dementia, like early-onset, vascular and Lewy body dementias. But despite the prevalence of these conditions, diagnosing them is still often complicated and costly. There are few options available to slow the progression of Alzheimer's and dementia. And there is still no cure, nothing that can halt or reverse it.

It's not for want of trying. In 2014, the National Institutes of Health provided $562 million to research Alzheimer's and related dementias. This year, federal funding will be over $3.7 billion, according to the Alzheimer's Impact Movement.

Much of that research has long been focused on one predominant hypothesis: that the disease is caused by amyloid plaques, distinctive proteins that show up on brain scans and in spinal taps and are one of the most definitive ways of diagnosing the disease. And recently, a couple of drugs targeting amyloid plaques have made a bit of headway, including one — lecanemab — that gained accelerated approval from the Food and Drug Administration amid some controversy about its benefits and risks.

However, some experts think there might be more to the story than amyloids. Studies have demonstrated that some people who have a significant amount of amyloid plaques never develop the symptoms of Alzheimer's or dementia. Some researchers think there might be other elements that contribute to the disease and better areas in which to intervene. Genetics, diet, lifestyle, environmental exposures, prior infections, the microbiome and several other factors might also be at play.

Some researchers are now deviating from the focus of the past few years. They're collaborating with scientists who study other parts of the body. They're thinking about prevention in addition to treatment. They're working on methods for earlier, easier and cheaper detection. And they're calling attention to better types of care that can improve quality of life later in the disease.

It's all research that, as it advances, will likely also improve conditions in congregate care settings like assisted living facilities and nursing homes. As the nation's population ages, it will be necessary to support more loved ones in the future.

And it's something Tina lived firsthand as she stood by Kevin's side, as they tried to understand what was happening to him.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (2)

The challenges of diagnosis

Tina thought she could see some signs of Alzheimer's, but Kevin was also relatively young, in his 50s, and he'd just had a big life change. Socially, he was fine. His personality hadn't really shifted much. When he finally went to a doctor in 2015, the doctor attributed Kevin's symptoms to the stress and depression of being unemployed and prescribed him an antidepressant.

Over a two year period, the medication didn’t seem to be working. Kevin was still forgetful, still having trouble with tasks he used to do all the time. He would get hired at new jobs ― at least six, by Tina's count ― and then let go.

By 2016, it had grown harder to ignore: Something was wrong. Nothing was changing. They went back to the doctor, and the doctor referred Kevin to a neurologist for a cognitive exam in November 2016.

The neurologist gave Kevin five words and asked him to repeat them back. He couldn't remember them.

Next, the neurologist asked him to draw the face of a clock that read 2:00 in the afternoon. He couldn't do it.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (3)

Then Kevin had to identify images of animals: rhinoceros, lion, camel. He couldn't name them.

"You're sitting there as the spouse and you want to scream out what the words are because you don't want them to get it wrong," Tina said. "It knocked me over. … I was so stunned by how poorly he did on this test."

The neurologist said they would need an MRI and additional cognitive testing. Between the MRI and the next round of tests, the neurologist prescribed Aricept, a drug used for dementia and cognitive decline.

Tina and Kevin still didn't have their answer, but now they had a prescription. Tina thought that meant things must be pretty serious.

She asked the neurologist if they could all meet to discuss the diagnosis, but he told them to wait until after the next round of cognitive tests, which would be administered by an outside company. Tina was upset and uncomfortable. Why were they being shunted from test to test without ever having a conversation about what might be happening to her husband?

Part of the problem was the challenges of diagnosis. Dementia often initially shows symptoms shared by many other conditions, including anxiety and depression, both of which have been on the rise in recent years.

Dr. Jordan Karp, professor and chair for the department of psychiatry at University of Arizona, knows this from his clinical experience. Karp described one patient, an academic, whom he had diagnosed with and was treating for anxiety but who didn’t seem to be getting much better. He initially showed a newfound fear of driving, but was so high functioning that he was still going to work and scored well on basic cognitive screens.

Karp said things didn't click for him until he met the patient's wife, who described more of the changes she was seeing at home. Eventually, he realized the patient had likely become scared of driving because of changes to his visuospatial perception and had been going to work but had not been accomplishing much there.

"Often we see behavioral and psychiatric symptoms as the presenting reason why people are brought to the doctor and they seek medical care," Karp said. "Their brains are changing and behavior comes from the brain. It's what is first brought to attention."

But if the patient behaves the same, a doctor might not spot the changes. That's a problem called diagnostic overshadowing, and it's commonly seen in individuals with intellectual and developmental disabilities, said Liz Carr, a clinical director who has worked with those with intellectual and developmental disabilities for many years and also trains other caregivers in the field.

Diagnosis is like playing 20 questions, she said, except there are hundreds of possible answers and nobody playing knows the answers.

For older adults with and without disabilities, she said, there are other conditions common to aging that mimic the signs of dementia: dehydration and malnutrition; metabolic disorders; urinary tract infections; vitamin deficiencies; and sensory impairments, among others.

So how do doctors actually diagnose dementia? Cognitive tests are a start, but doctors often need a brain scan or a spinal tap to confirm the presence of amyloid plaques, the clumps of proteins that build up between nerve cells and are a hallmark of Alzheimer's disease and some other dementias.

Those tests are expensive right now and out of reach for most patients, said James Fitzpatrick, a director of advocacy with the Alzheimer's Association. PET scans, for instance, cost thousands of dollars and are usually not covered by insurance. Spinal taps are costly and invasive, which discourages their use in most cases. And specialized tests and clinicians are also especially hard to access for those who don't live in major cities.

All of that means several clinical, technical, geographical and financial hurdles are working against early and accurate diagnosis of dementia.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (4)

And the stigma around mental illness can be detrimental to those experiencing dementia symptoms, said Dr. Anna Burke, chair for dementia and director of the Alzheimer's and Memory Disorders division at Barrow Neurological Institute.

"We need to be very careful about equating dementia with mental illness, because that is one of the stigmas that actually leads people to shy away from early diagnosis and from treatment and really impedes their access to care," Burke said.

Lori Reynolds, who spent many years as an assistant clinical professor of occupational therapy at Northern Arizona University and has a doctorate in gerontology, agrees. She said it's important to clarify the relationship between mental health and dementia. While dementia can appear to cause mental health conditions ― for instance, dementia patients also often experience anxiety ― that's not the same as someone having had clinical anxiety their whole life. Instead, it's a direct effect of the changes happening in their brain as a result of their degenerative brain disease.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (5)

"Diagnosing dementia is a multifaceted process," she said. "It's not a one and done."

As part of that process, advocates like Fitzpatrick hope scientists and researchers will advance the available options for early diagnosis. He dreams that one day a biomarker blood test or an eye scan could make it easier and cheaper to confirm that a patient has dementia.

Those ideas are still on the horizon; Fitzpatrick thinks they might be coming in the next few years. But for those grappling with the possibility of a dementia diagnosis now, the challenge continues.

Tina eventually made the difficult decision to confide in her colleagues at the Alzheimer's Association about what was going on with Kevin. With their help, she looked for a new neurologist. While she was doing that, Kevin faced his next cognitive test — a six-hour ordeal.

He had to go in by himself. Tina would remain outside. The test required him to perform seemingly easy tasks, like counting money. Things Kevin had once done with ease. Things he found himself now unable to grasp.

About halfway through the testing, Tina got a call from the proctors. Kevin was finished, they said. He didn't want to do any more testing.

"It was really hard for him, I think, because he was still in a place where he knew something was wrong, but he wasn't able to do some of the things that they were requesting him to do," Tina said.

The new neurologist sat down with Tina and Kevin to look over the results of the latest cognitive testing. On paper, he said, he would have thought Kevin was at least 70 years old ― a contrast to his actual age, 53.

A lumbar puncture (commonly known as a spinal tap), which allows doctors to remove a sample of the cerebrospinal fluid found in the lower back, confirmed what the neurologist suspected.

Kevin had early-onset Alzheimer's disease.

They left the office, sat in the car, and cried together.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (6)

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (7)

How Alzheimer’s progresses in the brain

By the time Kevin and Tina got their answers about Kevin's diagnosis, Kevin had progressed into the moderate stages of the disease.

That meant he would be unable to enroll in any clinical trials, because most clinical trials require patients in the early stages of Alzheimer's. They need to be able to report back on themselves, and Kevin was already unable to do that.

Some trials also asked patients to undergo successive lumbar punctures. When Kevin had his spinal tap to confirm his Alzheimer's diagnosis, Tina said, air got caught in the equipment and caused Kevin tremendous pain. He never wanted to do that again, ruling out any trials that used spinal taps. Even if he had wanted to, he could no longer pass the cognitive tests to get those opportunities.

But that first spinal tap had detected what was going on in Kevin's brain the whole time: beta-amyloid proteins, the hallmark of Alzheimer's disease.

That buildup, and the inevitable progression of the disease, is something that scientists have known about for decades and have been trying to halt or reverse. Right now, the outlook is grim. Nobody survives Alzheimer's disease. It just keeps going.

To understand that better, you have to zoom way in, to the cells that make up your brain.

In between every two brain cells is a gap called a synapse. That's how everything in your brain is wired together. And like electrical wires, there are junctures where two ends meet.

When your brain is working normally, signals travel electrically through a cell and chemically between cells, through the release of molecules called neurotransmitters at those junctures.

That happens over and over again, trillions and trillions of times. That's how you get up in the morning, how you brush your teeth, play basketball, write an essay or tell someone you love them.

As you age, the connections at those synapses start to wear out. Eventually, nerve cells in those areas start to die and the tissues degrade.

Scientists aren't entirely sure why that is, but they think it might be related to beta-amyloid plaques (a clumpy buildup of protein pieces that come from the fatty membranes surrounding nerve cells) and tau tangles (a malfunctioning of other types of proteins that help transport materials to your brain cells).

It's still unclear whether the plaques and tangles are actually causing the degeneration of the brain in those areas, or whether the plaques and tangles are a byproduct of degeneration that's happening because of something else.

In any case, with Alzheimer's, brain degeneration, plaques and tangles start to occur.

It often happens first in the hippocampus, the memory center of the brain, and the frontal lobe, which is associated with thinking and planning.

That can happen as early as 20 years or more before the onset of any symptoms.

In mild and moderate stages of Alzheimer's, the damage spreads to other parts of the occipital, parietal and temporal lobes, which can affect speech and proprioception (your body’s ability to understand where you are in relation to your surroundings).

Eventually, severe Alzheimer's degrades the whole brain, changing a person's personality, ability to access memories, and physical capabilities.

But the changes that occur might not only be in the brain, said Diego Mastroeni, an associate research professor at the ASU-Banner Neurodegenerative Disease Research Center. He and other researchers are interested in the possibility that changes in the microbiome ― the colony of viruses, bacteria, and other microscopic life forms that inhabit your gut and other organs ― might create inflammation that may lead to Alzheimer's disease and exacerbate it once it has already taken hold.

"I don't really believe in one particular biological mechanism that drives these kinds of diseases," he said. "I think it's many different things."

To investigate those possibilities, Mastroeni and his collaborators are examining cerebrospinal fluid and samples from the gut, liver, blood, brain and other tissues to get a more holistic look at the changes associated with Alzheimer’s.

Mastroeni suspects there's more going on than just the development of plaques and tangles, and that factors like genetics, environment, prior brain injuries, diet and lifestyle may all play a role in the onset of dementia. He described a study he worked on concerning identical twins who were both engineers. One had a desk job and one worked in the field, where he was exposed to higher levels of chemical pesticides.

The twin who worked in the field developed Alzheimer's, while the twin who worked the desk job did not.

Mastroeni is not alone in thinking there may be more to the puzzle than just plaques and tangles. Reynolds cited a study on nuns in which one remarkable woman, Sister Mary, scored highly on cognitive tests up until her death at age 101 ― despite having abundant plaques and tangles, the hallmarks of Alzheimer's. Reynolds believes most recent evidence suggests that lifestyle factors including lasting social bonds, consistent exercise and a healthy diet may all potentially prevent the body from developing Alzheimer's in ways that we don't yet fully understand.

Other researchers are making headway on hypotheses relating latent viral infections with the development of Alzheimer's. Dana Cairns, a researcher at Tufts, is examining miniature models of human tissues to study how HSV-1, an extremely common herpes virus that stays in the body indefinitely after initial infection, may eventually lead to inflammation and the development of amyloid plaques.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (8)
Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (9)
Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (10)

One of Cairns' mentors, Ruth Ithzaki, wrote an op-ed in November 2022 about how her attempts to pursue a viral theory of Alzheimer's were dismissed by a steadfast group of researchers intent on pursuing the theory of amyloid plaques.

The viral idea is not without controversy, and researchers are far from a definitive answer on which theory or theories may be most promising. Burke, of Barrow, noted that scientific research often occurs in waves or cycles of interest. The "sexy" thing in research now might be anti-amyloid treatments, she said, but that doesn't mean there isn't a wide range of possible routes to investigate.

Meanwhile, patients who already have dementia contend with their disease, slowly slipping away from what little knowledge we do have about what is happening to them.

As Kevin's brain and body changed, his behaviors began to change. Where he had once been worried that he wasn't working, he became content to just leave the house, go mountain biking and forget about what his responsibilities had once been.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (11)
Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (12)

He became a compulsive shopper. He began obsessively buying items from bike stores ― he got fixated on tubes and rims, bike lights, backpacks and toolkit bags. He was more impulsive, now. And where he had once been sleeping frequently ― a sign that suggested depression to his first doctor ― he became busy all the time. Kevin was agitated; he couldn't sit still.

The last year saw the most changes. It was during the height of the pandemic, in 2020, and Tina said the isolation worsened the progression of his disease. Kevin's communication slowed down. No longer his charismatic self, he stopped striking up conversations and answered questions in just a couple of words.

And he started getting angry.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (13)

The promise and futility of medications

Kevin's outbursts were mainly directed at men, which Tina says most often affected their sons or sometimes strangers at the grocery store or on the street.

He would puff up his chest and walk toward someone to start a confrontation.

"It was unnerving," Tina said. "It was very different. That's just not who he was."

He would hit his hand on his leg or his head, but Tina could usually keep him calm. "I was kind of his beacon, his lighthouse," she said. "As long as he could see me, everything was fine."

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (14)
Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (15)

On Christmas Eve 2020, their son Jacob, who was 21 at the time, came into the house. Like his father, Jacob was charismatic and had a big personality. On this occasion he came in quickly, announcing that he had candy for Kevin (at the time, Kevin had become fixated on sugar and wanted as much of it as he could get).

That set Kevin off.

Tina wasn't sure whether it was Jacob's demeanor that triggered it. You had to come in slow and gentle and explain things to Kevin. You "couldn't just come in hot," Tina said. In any case, this time Kevin's anger and agitation reached a boiling point.

Tina heard the confrontation from upstairs and knew from the tone that she needed to break things up. She rushed into the room and ran to put herself between her husband, who was puffing up his chest again, and their son.

It was a painful episode, among some others that Tina would prefer not to share because of the stigma they might engender.

"(People with dementia and Alzheimer’s) can't change how their brain is deteriorating," she said. "I think it's on us to meet them where they are … to keep them in a calm space and keep them happy."

Eventually, to do that, Kevin's doctors put him back on antidepressants, more specific to his condition than what they had prescribed early on when they didn't know about his Alzheimer's diagnosis.

There are a few medications that can help manage Alzheimer's symptoms, but there is no cure. Some drugs may be prescribed for the early to middle stages of the illness to boost alertness, memory and judgment, but they don’t do anything to slow or stop the progression of the disease.

That's long been a goal for scientists, and recently a couple of medications have made headlines as potential steps in that direction. The FDA recently granted accelerated approval for lecanemab, an anti-amyloid drug, because patients in clinical trials showed a reduction of beta-amyloid plaques compared with a placebo group.

Dr. Alireza Atri thinks this is a foundational step for the field. The director of the Banner Sun Health Research Institute and a cognitive neurologist who studies Alzheimer's, Atri has served as a consultant for government agencies, foundations and pharmaceutical companies, including those focused on an amyloid approach to the disease.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (16)

If Alzheimer’s is a wildfire that spreads through the brain, Atri said, he hopes that drugs like lecanemab – especially if they’re administered early enough – can play a significant role in slowing the burn well before patients reach a turning point when the damage becomes too great.

Patients in clinical trials who received lecanemab, on average, progressed less by about half a point on an 18-point dementia severity scale of cognitive and daily function. But Atri said that's not just statistically significant, it is also clinically meaningful. If a patient benefits by half a point, he said, that could mean, over the 18 months of the study, the equivalent of 5-6 months of more time recognizing a loved one or being able to continue a cherished hobby.

But the drug isn’t without controversy. Some users experience side effects – the medication includes a warning label about brain swelling – and some scientists who have examined available evidence have linked the drug to the deaths of three patients who participated in clinical trials, according to reporting from Stat News and Science.

Eisai, one of the developers of lecanemab, responded to a request for comment with official statements that said, “Outside of scientific papers in peer-reviewed journals or scientific conferences, it would be inappropriate to provide additional information about specific patients or comment on information that was provided by other sources.”

It remains to be seen whether lecanemab will get traditional approval from the FDA this summer.

As a result, the promise of the drug has been tempered by caution. Madhav Thambisetty, a physician with the National Institutes of Health, said he thinks the difference the drug makes might be too small to be noticeable by patients or their caregivers — meaning that the risks, to him, outweigh the benefits for now.

While anti-amyloid drugs are exciting because they could potentially slow the disease if they work, Thambisetty thinks more research will be required to determine whether that's actually happening, a question connected to research on whether amyloid plaques are even causing dementia in the first place.

Thambisetty says in the meantime, there are many other routes scientists and drugmakers hope to explore on their way to finding medications to treat dementia. Those include testing existing drugs for other diseases — drugs that have already been proven to be safe in clinical trials — to see if they have any effects on the progression of dementia.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (17)

It also includes using medications to manage the symptoms of the disease even as it progresses, like, for instance, Kevin's antidepressants.

It's not uncommon for dementia patients to be prescribed antidepressants, anti-anxiety medications and antipsychotics, and while non-pharmacological interventions might be preferred initially, doctors have to weigh the risks and benefits of medications to keep patients from harming themselves or others and to decrease the patient’s internal distress or delusions, said Karp, of UA.

In addition, many in congregate care settings, even those without dementia, struggle with their mental health and sometimes take medications for it. About a quarter of Arizona nursing home residents reported feeling down, depressed or hopeless in the third quarter of 2022, according to data from the Centers for Medicaid and Medicare Services.

When it comes to medications, those responsible for elder care for the general population could learn from the intellectual and developmental disabilities population, Carr says. Whenever someone with an intellectual or developmental disability is prescribed medication, the care team has to work methodically, because medications can have different effects in that population than in the average person. Because several care providers might be involved with one person, they need to coordinate in order to make sure they’re all on the same page.

So providers use a specific system to track behavior related to any medication. They log exactly when the person takes the medication every day and then chart behaviors in response to that medication several times throughout the day. At the end of a week or a month, they have a systematic collection of data that they can use to determine the effect of the medication, whether it's working and what might need to be done to adjust the care plan.

All health care facilities, for those with intellectual disabilities or not, are required to keep medication administration records. But caregivers for those with intellectual and developmental disabilities are specifically trained to monitor medication effects to ensure the person is able to participate in life to their fullest potential. It's a model that emphasizes strengths, not deficits; one that ensures medications don't end up being used as chemical restraints.

That's a relatively easy thing to do for anyone, Carr says, but she doesn’t think it's been applied to the general population of dementia patients because there's no mandate for it. If there's no requirement, it won't happen.

Kevin stopped responding to all the medications the doctors put him on. As a result, he started behaving more aggressively toward Tina, not just toward men or their sons.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (18)

Why do medications sometimes stop working? Scientists have some information about the brain's chemical interactions with certain drugs, but the question of why exactly the brain can become habituated to medications is "a Nobel Prize kind of question," Karp said.

Like much of the science of the brain, it remains out of reach, inside the black box that so infrequently gives up its secrets.

Meanwhile, people like Kevin suffer and are hospitalized. Kevin went to a psychiatric hospital to have his medications adjusted. There he was infected with coronavirus.

He went into acute kidney failure and was transferred to a different hospital. Tina couldn't see him until he recovered from COVID-19, but he lost his ability to walk and talk after that. The words that came out of his mouth were gibberish. Every so often Tina would catch a word or two that made sense, but most of the time he was unintelligible.

Tina, who continued to be his primary caregiver, needed to sort things out for his new needs. They lived in a two-story house, and now that Kevin couldn’t walk, she needed to rearrange their living space. And she needed time to get organized and prepare to help Kevin in the final stages of his disease.

So for a few months, Kevin would stay in the memory care unit of an assisted living facility.

The first day after he was taken there from the hospital, Kevin heard their son Jacob talking.

Almost out of nowhere, Kevin said, “Is that our baby?”

That, Tina said, was the best thing for Jacob to hear. They had spent so much time with him, around the clock at home and in isolation during the pandemic, and so much of that time had been filled with Kevin's agitation and anxiety.

But for a fleeting moment, he had recognized his son.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (19)

Caregiving until the end

Gradually, Kevin's agitation eased. The new medications seemed to be helping. He was happier and more cheerful, though he was still losing his cognition day by day.

The first thing Tina did when he entered memory care was to write Kevin’s story on a piece of paper — that he loved country music, his favorite singers, where he'd worked — so he "wasn't just this man in this room that couldn't talk to you."

Then she made herself a fixture at the facility. She visited every day and got to know the staff and the people working with her husband.

She quickly realized that the caregivers, though well-intentioned, didn't always understand why Kevin would yank their arms or how he needed them to explain what they were doing, slowly and carefully, the way Tina always had.

Dementia is difficult and costly to diagnose. It’s even harder to study. Here’s why there’s no cure yet (20)

Tina said she noticed that the staff rotated in and out so fast that it was hard to keep track of who'd had the lessons that made them better equipped to do their jobs.

She clearly remembered one woman who kept moving the furniture around in her room, which frustrated the caregivers. Tina asked the caregivers what she used to do before she was in the facility; they said she was a facilities manager of some sort. Tina told them that she thought the woman just wanted to clean. She was moving the furniture because it made her feel like she was doing her job.

When the staff started letting the woman do that, she settled down. Tina realized maybe she had the tools to help. So she offered to set up free training for the staff from the Alzheimer's Association, where she worked.

The nursing director agreed, but only five caregivers showed up on the day of the training.

Taking care of people with dementia is both a science and an art, but some caregivers never receive the most basic training that would better equip them for their jobs.

Reynolds, the gerontology expert, thinks education is sorely needed for both formal and informal caregivers and hopes educators will prepare students effectively.

There are factors in a person’s living environment, for example, that must be considered:

Loud noises from a squeaky medicine cart, laundry machine, kitchen or paging system could startle someone with impaired cognition.

Seemingly mundane objects can quickly become weapons for confused, threatened or otherwise disturbed dementia patients. Examples from police reports in Arizona include a shoe horn, a pill crusher, a coat hanger, a porcelain toilet tank cover, an electric hair trimmer and a metal pipe.

Other residents or caregivers can trigger a patient with their behaviors, speech, noises or other actions, such as wandering into their room or simply trying to pass by one another in a tight space.

Karp said when behaviors escalate to the point of causing violence, it "speaks to the need for the late-life health care workforce to be trained in identifying, diagnosing and managing behavioral and emotional symptoms and behaviors of older adults, especially those with psychosis, with dementia. … And it speaks to the need for our lawmakers to put more money toward the training of a late-life behavioral health workforce.”

Tina, as both Kevin's caregiver and as an employee of the Alzheimer's Association, agreed. "My biggest goal for Kevin in this whole thing was that he always felt safe, loved and cared for, you know, and happy," she said.

"I think for the most part, he did. But I think even in facilities, that's a huge missing piece, like a memory care facility," she said. “It's unfortunate they don't educate their staff in the way that they should about Alzheimer's."

Kevin was only in a care facility until Tina could take him home. They set up their bed in the dining room, on the first floor.

"As a caregiver, you are basically living in fire," Tina said. "Especially at the end. It's such a hard place to be, to try to manage."

Early-onset Alzheimer's moves even faster than its later-onset counterpart, and Kevin's disease progressed quickly. Faster than she ever could have imagined, Tina had to say goodbye.

On Dec. 21, 2021, Kevin died of Alzheimer's disease.

Tina thinks he would have noticed that date ― 12/21/21. He liked numbers.

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Tina still cherishes the memories she has with her husband: training to be a river raft guide with him until she became pregnant with her first child. Hiking, fishing, camping, mountain biking. Watching his smile.

And she knows what she’s lost: One of their older sons taught the youngest to tie a tie when he was a freshman in high school, not Kevin.

She tells his story because she hopes it will help others. And this is the reality of Alzheimer's disease and dementia. However much funding is poured into research, however much more scientists learn about the brain and the body and their intertwined demise, it's too late for the people being diagnosed with the disease now.

Many researchers hope that will change. They dream of the day when the puzzle will fall into place, when they will know exactly what causes the brain to deteriorate and find a way to stop or reverse it.

But for now, loved ones of those with dementia can do little more than rely on the system of doctors, nurses and caregivers that's already in place.

And that system is still not enough.


Why dementia is difficult to diagnose and even harder to study? ›

Doctors can determine that a person has dementia with a high level of certainty. But it's harder to determine the exact type of dementia because the symptoms and brain changes of different dementias can overlap. In some cases, a doctor may diagnose "dementia" and not specify a type.

Why is it so hard to find a cure for dementia? ›

Conflicting theories about the cause.

The human brain is extremely complex, and Alzheimer's disease is one of the most complex diseases of the brain. Clinical trials based on theories involving beta-amyloid and tau proteins have so far failed.

Is there any point in diagnosing dementia? ›

Getting a diagnosis of dementia can give you a better understanding of the condition and what to expect. Timely diagnosis can help you make important decisions about treatment, support and care.

What is the #1 cause of dementia according to experts? ›

Alzheimer's disease.

This is the most common cause of dementia.

Why is dementia difficult? ›

Someone with dementia may find it really difficult to do things like getting dressed, washing, eating or going to the toilet. They might not know where they are, and get lost easily. They may have trouble keeping themselves safe. They need lots more help and support from other people.

How often is the dementia diagnosis wrong? ›

Although the Alzheimer's Association estimates that the number of Americans living with the disease could rise from 5 million to 16 million by 2050, researchers who studied nearly 1,000 people listed in the National Alzheimer's Coordinating Center database found that 1 in 5 Alzheimer's cases may be misdiagnosed.

How close are we to curing dementia? ›

There is currently no "cure" for dementia. In fact, because dementia is caused by different diseases it is unlikely that there will be a single cure for dementia. Research is aimed at finding cures for dementia-causing diseases, such as Alzheimer's disease, frontotemporal dementia and dementia with Lewy bodies.

Has anyone ever gotten better from dementia? ›

There is currently no cure for most types of dementia – including the dementia caused by Alzheimer's disease. These types of dementia are what we call “neurodegenerative.” The progression of these dementias cannot be reversed right now; symptoms gradually get worse.

Why can't we stop dementia? ›

In the majority of cases dementia is caused by a mix of factors, called risk factors. Some of the risk factors, like our age and genetics, we cannot change. But there are steps we can take to look after our brain health, and to reduce our risk of dementia.

What is the most reliable test for dementia? ›

Mini-Mental Status Examination (MMSE)

The MMSE is the most common test for the screening of dementia. It assesses skills such as reading, writing, orientation and short-term memory.

What is a quick test for dementia? ›

The Mini-Cog© is a fast and simple screening test to help detect dementia in its early stages. In just 3 minutes, Mini-Cog© can help doctors and other professional care providers identify possible cognitive impairment in older patients.

What is the most diagnosed dementia? ›

Alzheimer disease is the most common form and may contribute to 60–70% of cases. Other forms include vascular dementia, dementia with Lewy bodies (abnormal deposits of protein inside nerve cells), and a group of diseases that contribute to frontotemporal dementia (degeneration of the frontal lobe of the brain).

What disease is the leading cause of dementia? ›

Alzheimer's disease is the most common cause of dementia among older adults. An estimated 6.5 million Americans are living with Alzheimer's disease.

What causes death with dementia? ›

A person in the later stages of dementia is likely to have a weak immune system. This means they have a higher risk of getting infections, which in some cases can last for a long time. One of the most common causes of death for people with dementia is pneumonia caused by an infection.

What is the most common cause of dementia in us? ›

What are the most common types of dementia? Alzheimer's disease. This is the most common cause of dementia, accounting for 60 to 80 percent of cases. It is caused by specific changes in the brain.

What is the 3 word memory test? ›

The Mini-Cog test.

A third test, known as the Mini-Cog, takes 2 to 4 minutes to administer and involves asking patients to recall three words after drawing a picture of a clock. If a patient shows no difficulties recalling the words, it is inferred that he or she does not have dementia.

What is the 5 word memory test? ›

Administration: The examiner reads a list of 5 words at a rate of one per second, giving the following instructions: “This is a memory test. I am going to read a list of words that you will have to remember now and later on. Listen carefully. When I am through, tell me as many words as you can remember.

What is the weakness of dementia? ›

For many years, individuals with frontotemporal dementia show muscle weakness and coordination problems, leaving them needing a wheelchair — or unable to leave the bed. These muscle issues can cause problems swallowing, chewing, moving and controlling bladder and/or bowels.

What reversible condition is mistaken for dementia? ›

Delirium is commonly mistaken for dementia due to the many overlapping symptoms. However, unlike dementia, delirium is often reversible. Signs and symptoms of delirium can include the following: Confusion.

Can dementia be brought on by emotional trauma? ›

This is a diagnosed condition that occurs when a person has been through a life-changing or distressing event. Alzheimer's Society-funded research has also analysed the literature related to the link between PTSD and dementia. They found that people with PTSD have up to twice the risk of developing dementia.

Does sugar make dementia worse? ›

Consuming too much sugar can cause delayed cognitive performance and even memory difficulties. It also weakens and destroys the blood vessels, resulting in a decline in mental capacity which can lead to dementia and Alzheimer's.

What is the longest someone has survived with dementia? ›

Dementia is often called a 'life limiting' condition although people have been known to live with it for as long as 26 years after they first start showing symptoms. Generally speaking, the life expectancy of a person with dementia depends on the type of dementia they are diagnosed with, their age, and their health.

What is the longest you can live with dementia? ›

The average life expectancy figures for the most common types of dementia are as follows: Alzheimer's disease – around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer's live for longer, sometimes for 15 or even 20 years.

What it means when a person with dementia says I want to go home? ›

Often when a person with dementia asks to go home it refers to the sense of 'home' rather than home itself. 'Home' may represent memories of a time or place that was comfortable and secure and where they felt relaxed and happier. It could also be an indefinable place that may not physically exist.

What supplements can help with dementia? ›

Dietary Supplements and Summary of Current Research
  • Ginkgo biloba.
  • Omega-3 fatty acid supplements.
  • Vitamin E.
  • Curcumin.
  • B vitamins.

Who is less likely to get dementia? ›

Studies show that dementia risk is lowest in people who have several healthy behaviours in mid-life (aged 40–65). These behaviours include: ∎regular mental, physical and social activity ∎not smoking ∎drinking alcohol only in moderation ∎keeping a healthy diet.

Can vitamin D reverse dementia? ›

Exposure to vitamin D was associated with significantly higher dementia-free survival, compared to no exposure (Figure 2A). The 5-year survival for D− was 68.4% (95% CI: 67.1%–69.7%), while for D+ it was 83.6% (95% CI: 82.3%–84.9%). MCI was associated with lower dementia-free survival than NC, as expected.

What are the 3 foods that fight memory loss? ›

What are the foods that fight memory loss? Berries, fish, and leafy green vegetables are 3 of the best foods that fight memory loss. There's a mountain of evidence showing they support and protect brain health.

Do all people get dementia eventually? ›

As we age, our brains change, but Alzheimer's disease and related dementias are not an inevitable part of aging. In fact, up to 40% of dementia cases may be prevented or delayed.

What is the 4 hour test for dementia? ›

Neuropsychological evaluation.

This process lasts around four hours and includes a series of in-depth analyses, such as one-on-one interviews and written and oral tests. These assessments are designed to gauge specific cognitive functions, like attention, problem solving, spatial skills, and executive functioning.

What is the 5 minute dementia test? ›

The five-minute cognitive test (FCT) was designed to capture deficits in five domains of cognitive abilities, including episodic memory, language fluency, time orientation, visuospatial function, and executive function.

Is dementia is Hereditary? ›

Many people affected by dementia are concerned that they may inherit or pass on dementia. The majority of dementia is not inherited by children and grandchildren. In rarer types of dementia there may be a strong genetic link, but these are only a tiny proportion of overall cases of dementia.

What is 7 in a dementia test? ›

Background: The seven minute screen (7MS) is a compilation of the temporal orientation test, enhanced cued recall, clock drawing, and verbal fluency. It has been shown to be useful for detecting Alzheimer's disease in a population of patients with memory complaints.

What is the dementia test with 30 questions? ›

The MMSE is commonly used because it only takes 5 – 10 minutes and doctors or nurses don't need any equipment or special training. The test has 30 questions that are each worth 1 point. These questions test memory, orientation, and math skills.

Can you see dementia on an MRI? ›

Doctors also use brain scans to find evidence of other sources of damage, such as tumors or stroke, that may aid in diagnosis. Brain scans used to help diagnose dementia include CT, MRI, and PET scans.

What is the best drug to improve memory? ›

Cholinesterase inhibitors are the first choice of treatment for memory loss. The doctor may also prescribe the single-dose drug combination Namzeric to treat moderate to severe memory loss.

What medications should be avoided with dementia patients? ›

Common Drugs to Avoid

Narcotics such as hydrocodone, oxycodone and morphine; muscle relaxants such as cyclobenzaprine, carisoprodol; NSAIDs such as ibuprofen, naproxen should be avoided if possible.

How can I slow down dementia naturally? ›

That means plenty of vegetables, beans, whole grains, fish and olive oil—and limited processed food. Get plenty of omega-3 fats. Evidence suggests that the DHA found in these healthy fats may help prevent Alzheimer's disease and dementia by reducing beta-amyloid plaques.

What is the major reason why Alzheimer's disease is so difficult to diagnose? ›

This degeneration may show up in a variety of ways in brain scans. However, these scans alone aren't enough to make a diagnosis. Scans aren't used to diagnose the condition because there is overlap in what doctors consider normal age-related change in the brain and abnormal change.

Why is it hard to study Alzheimer's disease? ›

Finding a cure for neurodegenerative diseases such as Alzheimer's is challenging. They're difficult to diagnose, and drugs struggle to get into the brain as the brain's blood supply is largely separate to the rest of the body.

Is dementia a learning difficulty? ›

It is important not to assume that a person with a learning disability has dementia simply because they fall into a high risk group or because they are getting older. Equally, it is important that symptoms of dementia are not missed because they are mistakenly seen as part of the learning disability.

Can dementia make it difficult to remember things hard to think clearly and hard to take care of oneself? ›

Dementia makes it hard for people to remember, learn, and communicate. It may cause changes in mood and personality, such as depression. Early on, memory lapses and foggy thinking may bother someone who has dementia. Later, disruptive behavior and other problems can create a burden for caregivers and family.

Why can't you diagnose Alzheimer's before death? ›

Doctors can't definitely diagnose Alzheimer's disease until after death, when they can closely examine the brain under a microscope. But they can use tests to rule out other conditions that might cause the same symptoms.

Which is worse to have dementia or Alzheimer's? ›

Alzheimer's disease starts in the brain many years before symptoms start to show. Early symptoms are mild and so don't stop someone doing their normal everyday activities. It's only later that symptoms become severe enough to be called 'dementia'.

What is the 5 word test? ›

Abstract. Introduction: The five-word test (5WT) is a serial verbal memory test with semantic cuing. It is proposed to rapidly evaluate memory of aging people and has previously shown its sensitivity and its specificity in identifying patients with AD.

What do dementia patients think about? ›

Receiving a life-changing dementia diagnosis doesn't strip a person of their humanity or personhood. People with dementia think about the same things that any human thinks about — emotions, relationships, daily life, tasks to accomplish, and more.

What is the most common cause of death in dementia patients? ›

One of the most common causes of death for people with dementia is pneumonia caused by an infection. A person in the later stages of dementia may have symptoms that suggest that they are close to death, but can sometimes live with these symptoms for many months.


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