Dementia Archives - Mayo Clinic News Network https://newsnetwork.mayoclinic.org/ News Resources Thu, 06 Mar 2025 16:48:38 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.1 New test distinguishes between prion disease and other causes of rapidly progressive dementia https://newsnetwork.mayoclinic.org/discussion/new-test-distinguishes-between-prion-disease-and-other-causes-of-rapidly-progressive-dementia/ Thu, 06 Mar 2025 16:48:37 +0000 https://newsnetwork.mayoclinic.org/?p=400552 In May of 2024, Mayo Clinic launched a new prion test, RT-QuIC Prion, CSF, which can distinguish prion disease from other causes of rapidly progressive dementia — particularly autoimmune forms of dementia and rapidly progressive forms of Alzheimer's disease. “Rapidly progressive dementias are forms of dementia where the patient goes from the first symptom onset […]

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In May of 2024, Mayo Clinic launched a new prion test, RT-QuIC Prion, CSF, which can distinguish prion disease from other causes of rapidly progressive dementia — particularly autoimmune forms of dementia and rapidly progressive forms of Alzheimer's disease.

“Rapidly progressive dementias are forms of dementia where the patient goes from the first symptom onset to loss of functional independence, usually in less than two years,” says John Mills, Ph.D., co-director of Mayo Clinic’s Clinical Neuroimmunology Laboratory.

In the early stages of rapidly progressive dementias, patients often exhibit nonspecific symptoms that make reaching a definitive diagnosis challenging. However, it’s crucial to identify the correct cause as soon as possible, because some forms — such as those driven by autoimmune processes — may be treatable, while others are not.

John Mills, Ph.D., co-director of the Clinical Neuroimmunology Laboratory at Mayo Clinic

“It's really important to be able to give the patient a quick diagnosis and an accurate diagnosis,” says Dr. Mills. “Because if it's treatable, you're going to want to treat right away.”

Human prion disease, also called Creutzfeldt-Jakob disease (CJD), results from the misfolding of a normal prion protein — an essential protein present in everyone. The misfolded form of the protein, the cause of CJD, can emerge due to an underlying genetic mutation that predisposes the protein to misfold or spontaneous errors in protein folding. The misfolded protein can trigger a self-perpetuating cycle by causing correctly folded prion proteins to adopt the pathogenic form. Over time, this process leads to the death of neurons. Unfortunately, there is no cure.

Until recently, lab testing for CJD has been limited to nonspecific neuronal degeneration markers. These tests can detect and confirm rapid destruction of the brain tissues is occurring, but they cannot confidently tell clinicians the underlying cause. With the development of an RT-QuIC (or “real-time quaking-induced conversion”) assay for prion disease, clinicians were able to, for the first time, get a diagnostic test result specific for prion disease with very high diagnostic accuracy. Before this test was available, it wouldn’t be until an autopsy was complete that the cause could be confidently identified.

Making a dangerous agent safe to work with

RT-QuIC Prion, CSF (cerebral spinal fluid) is the only definitive antemortem clinical test of its kind that doesn’t involve a brain biopsy.

“A lot of the labs that originally did this testing started with brain homogenates, and so when you talk about directly working with brain tissues, there’s a clear risk of transmission in instances of needlesticks, for instance,” says Dr. Mills.

Ellen Lexvold, M.S., technical specialist coordinator in the Department of Laboratory Medicine and Pathology at Mayo Clinic

Fortunately, RT-QuIC for prion disease was proven sensitive using CSF specimens, which is a low-risk specimen and can be manipulated in a standard clinical laboratory that operates at biosafety level 2 (BSL-2). But to ensure an additional layer of safety, the goal at Mayo Clinic was to perform this testing in a BSL-2+ laboratory, which meant a special lab space had to be built from the ground up.

“Creating the right space for this test was a tricky bit of doing,” says Ellen Lexvold, technical specialist coordinator in the Neuroimmunology Lab, who helped build out the new test lab. “It was like building an airplane as you’re flying it. We had to tailor the workflow to special considerations, like engineered safety controls, seamless floor tiles, corrosion-resistant steel tables (bleach is one of the few substances that can inactivate pathogenic prion proteins), negative pressure airflow, and a lock-restricted area.” 

Grizzly bear country

Prion testing is so unique that, prior to Mayo’s development of the RT-QuIC clinical assay, there was only one other lab in the U.S. offering the test and only a handful of laboratories performing the test worldwide.

The birthplace of RT-QuIC is Rocky Mountain Laboratories (RML), a research facility situated in the tiny Montana town of Hamilton, wedged between the Bitterroot and Sapphire Mountain ranges on a picturesque landscape.

“In 2010, the RML reported the use of a test called RT-QuIC in a landmark paper,” says Dr. Mills. “They demonstrated how this assay was able to detect very small amounts of pathogenic prion protein, and they could amplify those prion proteins, in vitro, and detect them with very high sensitivity. This was the first time an assay that was specific to prion disease had enough sensitivity to be considered as a potential diagnostic test for prion disease.”

Matt Roforth, a senior developer for the Department of Laboratory Medicine and Pathology at Mayo Clinic, runs his first RT-QuIC assay at RML.

In 2018, Dr. Mills, Lexvold, and Matt Roforth, a senior developer for Mayo Clinic’s Department of Laboratory Medicine and Pathology, traveled to Hamilton to learn how to perform the test. The team spent a week at RML, which, because of its research specialization in vector-borne diseases and emerging infectious diseases, is one of the few labs in the U.S. that has a BSL-4 rating, a requirement to house things like Ebola. RML is a National Institutes of Health (NIH) biomedical research facility.

“The facility is encircled in barbed-wire fencing, security gates, and before you can enter you have to have a background check,” says Dr. Mills. “Every morning when we walked in, we had to go through a security checkpoint. They inspect your belongings, you walk through a metal detector. There was very tight security for good reason as it houses highly contagious, dangerous pathogens.”

RML is quite particular about the use of the RT-QuIC technology and will only teach it onsite. Dr. Mills continues, “They want to know that whoever is doing the testing is doing it right. They walk you through their protocols, they want to watch you perform some of the testing so they’re sure you know how to do it.”     

Right out of a movie

During the mornings and early afternoons at RML, the team learned cutting-edge technologies and established connections that would help them launch this test at Mayo. “Then there wasn’t much to do with our free time,” says Dr. Mills. “So we’d go hiking up the Bitterroot Mountains to check things out.”

They also often ended up at a local diner, where everyone knew everyone and the owner doubled as the cook. The whole experience was “right out of a movie,” according to Dr. Mills. In fact, parts of the TV series “Yellowstone” were filmed in Hamilton and the surrounding area. Dr. Mills also recounts, “We met some renowned and well-regarded researchers who moved to Hamilton to work at RML, often from around the world. Not exactly the type of people you’d expect to be handy with a shotgun, but they had bears and all sorts of wild animals coming into their homes.”

When the team returned to Rochester, they had to wait for a new lab space to be built before they could develop the test — a space they coined the “Bitterroot Lab” in honor of their Montana experience. It took more than two years (thanks to the pandemic interruption) to develop a clinically validated version of the prion test.

Ellen Lexvold, technical specialist coordinator, enjoys a hike in the Bitterroot Mountains near Hamilton, Montana.

“We had to take something that was really meant for research and we had to update it, we had to scale it up to keep pace with the throughput workflow of a clinical space,” says Lexvold.

“At the Rocky Mountain Labs, everything is done manually. So somebody is directly pipetting the sample. They’re adding their agents into each well. It’s a very manual assay. We did something different. We looked at different robotic, automated instrumentation that we maybe could use to do all that pipetting so it didn’t have to be manual.”

Dr. Mills adds, “We wanted a system that was small so that it could actually fit into a biosafety cabinet because we didn’t want those samples being manipulated and mixed with all the reagents outside of the biosafety cabinet. So that was a challenge. But our lab staff really stepped up and embraced the challenge and believed in the vision of offering the test at Mayo Clinic.”

Staff worked with a vendor that had a piece of equipment with a small footprint that, after some modifications, would work inside of a biosafety cabinet.

Jack Wu, Ph.D., now a clinical chemistry fellow, developed and validated the test. “Basically, you take the patient’s CSF, mix it with a recombinant substrate prion protein that was made in-house at Mayo Clinic, and a fluorescent dye that labels the protein aggregates generated in the reaction,” he says. “You incubate this plate at a temperature of 55 degrees Celsius while shaking it with certain reagents. It measures for the fluorescence every 45 minutes and does this for 36 hours. 

“The most critical component of this test is the production of high-quality substrate proteins, which sets the basis for the assay’s superior performance in detecting some rare subtypes of human prion diseases. The RT-QuIC methodology is the first of its kind at Mayo.”

Turnaround time for a test result is less than a week, which is no small feat considering how specialized the RT-QuIC is. “The laughing joke was that RT-QuIC wasn’t so quick,” says Dr. Mills. “But I think we are changing attitudes about this.”

A definitive answer in place of a cure

Part of the reason Mayo went through all this trouble to get this test is, heretofore, there was only one other lab in the U.S. that performed a clinical version of the test: The National Prion Disease Pathology Surveillance Center (NPDPSC), a lab in Cleveland, Ohio, also trained by RML. The NPDPSC was founded by the CDC as a result of the mad cow disease scare, that happened many years ago, to monitor this disease threat in the future.

“The problem is they’re not a traditional reference lab,” says Dr. Mills. “They offer a prion test, but one of our concerns was that their turnaround time (for a test result) is long. They’re not operating in the normal reference lab industry standards where you have 24/7 lab coverage including holidays.  We knew we could provide a faster turnaround time, innovate around the technology, and increase accessibility of this testing through Mayo Clinic Laboratories.”

Dr. Mills continues, “In addition, Mayo Clinic strives to offer a one-stop shop for diagnostic testing. This test fits in nicely with that philosophy. Our patients were waiting a long time for diagnostic answers. And having to wait has a huge impact on them and their family.”         

Now, patients showing symptoms of a rapidly progressive form of dementia can get a definitive answer, quickly, with a highly sensitive test. This small comfort is what drove Mayo Clinic to send a team to Montana, build an entirely new lab space, and automate a complex research test for clinical use. “There was a lot of heavy lifting that had to happen in the clinical lab, because this test is very unique from everything else we do,” says Dr. Mills. “But Mayo Clinic and our people have a history of supporting complex projects, even when they seem daunting to do, especially if there is an opportunity to improve patient care.”

This article first published on the Mayo Clinic Laboratories blog.

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Can music help someone with Alzheimer’s disease? https://newsnetwork.mayoclinic.org/discussion/consumer-health-can-music-help-someone-with-alzheimers-disease/ Sun, 23 Jun 2024 10:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=352137 Alzheimer's disease is a progressive disorder that causes brain cells to waste away and die. Alzheimer's disease is the most common cause of dementia, which is a term used to describe a group of symptoms that affect memory, thinking and social abilities severely enough to interfere with daily function. As many as 5.8 million people in the […]

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a close-up of musical notes on a sheet of music

Alzheimer's disease is a progressive disorder that causes brain cells to waste away and die. Alzheimer's disease is the most common cause of dementia, which is a term used to describe a group of symptoms that affect memory, thinking and social abilities severely enough to interfere with daily function.

As many as 5.8 million people in the U.S. were living with Alzheimer’s disease in 2020, according to the Centers for Disease Control and Prevention. And this number is projected to nearly triple to 14 million people by 2060.

Memory loss is the key symptom of Alzheimer's disease. An early sign of the disease is difficulty remembering recent events or conversations. As the disease progresses, memory impairment persists and worsens, affecting the ability to function at work or at home.

Musical memories often are preserved in Alzheimer's disease, though, because key brain areas linked to musical memory are relatively undamaged by the disease. Research suggests that listening to or singing songs can provide emotional and behavioral benefits for people with Alzheimer's disease and other types of dementia.

Music also can benefit caregivers by reducing anxiety and distress, lightening the mood, and providing a way to connect with loved ones who have Alzheimer's disease — especially those who have difficulty communicating.

If you'd like to use music to help a loved one who has Alzheimer's disease, consider these tips:

  • Think about your loved one's preferences.
    What kind of music does your loved one enjoy? What music evokes memories of happy times in his or her life? Involve family and friends by asking them to suggest songs or make playlists.
  • Set the mood.
    To calm your loved one during mealtime or a morning hygiene routine, play music or sing a song that's soothing. When you'd like to boost your loved one's mood, use more upbeat or faster-paced music.
  • Avoid overstimulation.
    When playing music, eliminate competing noises. Turn off the TV. Shut the door. Set the volume based on your loved one's hearing ability. Choose music that isn't interrupted by commercials, which can cause confusion.
  • Encourage movement.
    Help your loved one to clap along or tap his or her feet to the beat. If possible, consider dancing with your loved one.
  • Sing along.
    Singing along to music together with your loved one can boost the mood and enhance your relationship. Some early studies also suggest musical memory functions differently than other types of memory, and singing can help stimulate unique memories.
  • Pay attention to your loved one's response.
    If your loved one seems to enjoy particular songs, play them often. If your loved one reacts negatively to a particular song or type of music, choose something else.

Connect with other caregivers talking about Alzheimer's disease in the Caregivers: Dementia support group on Mayo Clinic Connect, an online patient community moderated by Mayo Clinic.

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Mayo Clinic Minute: Does menopause cause brain fog? https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-does-menopause-cause-brain-fog/ Wed, 07 Jun 2023 14:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=367845 Menopause can bring on an array of symptoms from hot flashes and night sweats to weight gain. But can it cause problems with memory? Mayo Clinic's Dr. Juliana Kling, assistant director of Mayo Clinic's Women's Health Center, explains the connection between menopause and brain fog. Watch: The Mayo Clinic Minute Journalists: Broadcast-quality video pkg (1:06) is in the downloads at […]

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Menopause can bring on an array of symptoms from hot flashes and night sweats to weight gain. But can it cause problems with memory?

Mayo Clinic's Dr. Juliana Kling, assistant director of Mayo Clinic's Women's Health Center, explains the connection between menopause and brain fog.

Watch: The Mayo Clinic Minute

Journalists: Broadcast-quality video pkg (1:06) is in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network." Read the script.

Brain fog is a condition often used by women during menopause to describe problems with memory, concentration and focus. It can create concerns that it could be an early sign of dementia or other serious issues. Dr. Kling says patients going through menopause often ask whether their brain fog is a real thing.

"Yes, it is. When I tell women that in clinic, they're like, 'Oh, thank goodness, I'm not getting dementia, right?' I think a lot of us go there, that it is a reflection of something bad," says Dr. Kling.

Experts say studies show evidence of brain fog during menopause

Dr. Kling says studies have shown evidence of brain fog during menopause.

"Multiple studies have shown cognitive complaints by women that are going through the menopause transition both subjectively like, 'Oh gosh, I keep forgetting where my keys are.' And also objectively when they do cognitive tests, they see changes in executive function," says Dr. Kling.

Dr. Kling says brain fog could be related to sleep disturbances, another common symptom of menopause. She says hormonal therapy may help ease symptoms.

"We don't have enough studies to say hormone therapy is definitely going to treat those, but many women, once their hot flashes and night sweats are better controlled, their sleep is better, their mood is better. Because they're on treatment for their menopause, they'll notice improvement in their cognitive complaints too," she says.

The good news, brain fog appears to be temporary. Dr. Kling says tests for brain fog after the menopause transition do show improvement. Check with your clinician to find out what treatment is right for you. 


Related posts:

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Mayo Clinic Minute: Reducing dementia risks https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-reducing-dementia-risks/ Wed, 31 May 2023 15:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=342142 Former first lady Rosalynn Carter has been diagnosed with dementia. A family statement, posted on The Carter Center website, says that she continues to live happily at home with her husband, enjoying spring in Plains, Georgia, and visits with loved ones. The statement goes on to say that it's hoped that sharing the family's news will increase […]

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Former first lady Rosalynn Carter has been diagnosed with dementia. A family statement, posted on The Carter Center website, says that she continues to live happily at home with her husband, enjoying spring in Plains, Georgia, and visits with loved ones. The statement goes on to say that it's hoped that sharing the family's news will increase important conversations at kitchen tables and in doctor's offices around the country.

More than 55 million people worldwide are believed to be living with dementia, according to the World Health Organization. And women are likely to be twice as affected by dementia as men.

Dementia is an umbrella term for a group of symptoms affecting memory, thinking and social abilities. It's not one disease. And Alzheimer's disease is the most common form of dementia.

Dr. Ronald Petersen, director of the Alzheimer's Disease Research Center at Mayo Clinic, says you can't prevent dementia, but you can reduce some of your dementia risks. In fact, there are a dozen risk factors that are modifiable.

Watch: The Mayo Clinic Minute

Journalists: Broadcast-quality video (0:59) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Not every older adult will develop dementia, but there are risk factors that can be modified or changed.

"Some of these are cardiovascular issues, like blood pressure, smoking, obesity, diabetes and education," says Dr. Petersen. "Sleep is an important factor, as well as social isolation and the development of depression."

Heavy alcohol use, hearing loss and air pollution also may be risk factors.

If one were to attack one or more of these, you may actually be able to reduce your risk of developing cognitive impairment as you age."

Dr. Petersen says stay active — physically, socially and intellectually.

  • Exercise.
  • Read books.
  • Go to lectures.
  • See family and friends.

And get your hearing checked.

"Most importantly is sleep hygiene. Many people have difficulty with sleeping as they age for a variety of reasons," says Dr. Petersen.

More dementia related posts:


For the safety of its patients, staff and visitors, Mayo Clinic has strict masking policies in place. Anyone shown without a mask was either recorded prior to COVID-19 or recorded in a nonpatient care area where social distancing and other safety protocols were followed.

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Dementia-related pain: What caregivers need to know https://newsnetwork.mayoclinic.org/discussion/dementia-related-pain-what-caregivers-need-to-know/ Wed, 22 Feb 2023 13:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=359347 Dementia isn't a specific disease. Instead, it describes a collection of symptoms that affect a person's thinking and social abilities enough to interfere with daily life. There are more than 55 million people worldwide living with dementia. Of these, 50% to 60% have Alzheimer's disease. Dementia is the seventh leading cause of death worldwide. There […]

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Dementia isn't a specific disease. Instead, it describes a collection of symptoms that affect a person's thinking and social abilities enough to interfere with daily life. There are more than 55 million people worldwide living with dementia. Of these, 50% to 60% have Alzheimer's disease. Dementia is the seventh leading cause of death worldwide.

There is a constellation of dementia symptoms, and memory loss is the primary feature. Other common symptoms are physical functional decline and difficulty with mental tasks, like planning or spatial ability. Pain is another frequent symptom, although it is often overlooked and undertreated.

Dementia-related pain

As dementia progresses, so does the likelihood that patients are experiencing pain. Between 50% and 80% of patients with moderate to severe dementia experience pain daily. Many patients receive inadequate treatment due lack of recognition. Alzheimer's disease causes the person to develop a mask-like facial expression. This minimizes typical facial expressions of pain, like a drawn mouth or furrowed brows. Also, patients may have lost the cognitive ability to tell caregivers about their pain with phrases such as "this hurts" or "I am in pain."

Unfortunately, many patients with dementia are left with only basic expressions of pain presented through negative behaviors. These include screaming, cursing or striking out, particularly at caregivers.

Untreated pain also may cause patients to become more withdrawn or fatigued. This may be due to their discomfort or lack of solid sleep. Even though patients may feel drowsy and sleep more than before, their sleep is disturbed and not restorative. Patients may become more alert and interactive once their pain is treated, even if medications have a possible side effect of drowsiness.

Importantly, there is a marked increase in caregiver stress in those caring for patients experiencing pain.

Types of dementia-related pain

Chronic pain is pain that lasts longer than three months. It is associated with cognitive, emotional and social decline. The link between chronic pain and Alzheimer's disease is widely accepted despite not being fully understood.

Chronic pain affects some of the same areas of the brain that are affected by Alzheimer's disease. The changes occur in the area called locus coeruleus and affect a chemical messenger called norepinephrine. As this messenger is released, it causes the pain-relaying cells in the brain to become inflamed.

The degree of cognitive decline in a patient with Alzheimer's can be directly correlated with the severity of pain experienced. This means that a patient that does not have another apparent known cause of pain could still be experiencing significant pain. This is likely due to the neuroinflammation in the brain.

Other causes of pain include previous injuries and areas of surgery. Perhaps the patient had a knee or hip replacement or a tennis elbow injury when younger. These former injuries or conditions can become painful as patients become less mobile. Joints can become stiff and sore when not used regularly. The patient may avoid being repositioned or using painful body parts. This can contribute to developing contractures, which is the tightening of muscle, skin, tendons and tissues. Pressure ulcers can develop from spending a significant amount of time in the same position and lead to pain.

Other medical conditions, like cancer, heart disease or kidney disease, can cause pain. These types of pain can be more difficult to assess. Caregivers may not realize the disease has worsened because patients cannot verbally express how they are feeling. Swelling or other symptoms may not be easily noticed if the person is bedridden. And patients have a hard time expressing nuanced symptoms like chest or flank pain.

Finally, mental pain can be exasperated by dementia. Patients may experience significant loss or grief, even when confused or disoriented. This can lead to social, spiritual or emotional pain, which is felt physically like other types of pain.

Assessing pain

Patients often are asked to rate their pain on a scale of 1 to 10. This isn't an option for patients with moderate to severe dementia. They're not able to verbally express or rate their pain or discomfort.

The Pain Assessment in Advanced Dementia Scale (PAINAD) was developed to assess pain and reduce the likelihood that it is unrecognized and untreated. It's easy to learn and use by people without prior medical training and does not require the patient to have language skills.

PAINAD scale

Medication treatment

When treating pain, health care teams always want to prescribe the lowest dose of medication. Narrowing in on the type of pain that a patient is experiencing helps achieve this goal. For example, a patient likely has neuropathic pain if the pain burns, tingles or travels from one area to another. This requires medications that are specific to the nervous system. Other medications are used to treat inflammation.

Some pain is caused by many things, such as cancer pain. This may require several medications, each with a specific role. When used together, lower doses of each medication may be all that is necessary to ease the pain. This is referred to as multimodal pain therapy.

Nonmedication treatment

Sometimes, pain medication is not necessary, and patients can get pain relief through other treatments.

Massage can be beneficial and ease the pain. A caregiver doesn't need to be a trained massage therapist to help. If you know that your grandmother had a knee replacement and her knee feels warm or swollen, gently massage it and gauge her reaction. She may not be able to tell you that it feels good, so watch if her body position and facial expression relax and her breathing slows. These physical cues will help you know that what you are doing is helpful.

Music therapy is a beautiful approach to pain management. You don't need to be a trained music therapist, as just knowing what grandpa liked to listen to in his youth can help. Playing music can distract him temporarily and release natural endorphins to reduce pain. Music also can help orient patients and bring pleasant feelings and memories.

Other treatments could include aromatherapy, a visit from a pet therapy animal or drawing with your loved one. Families can do these activities together with no additional training needed.

Finally, don't underestimate the power of repositioning. If your loved one looks uncomfortable, gently shift him or her into a new position. Watch for relaxed facial expressions or body language to ensure the new position feels better. Frequent position changes enhance comfort and improve blood flow to the skin, which protects against pressure sores.

Caregiver tips

Caregivers play an important role in assessing pain and advocating for treatment.

Understand how to assess signs or symptoms of pain using the PAINAD scale and follow the ALTAR acronym to address potential pain in your loved one with dementia:

  • Anticipate
    Expect that your loved one with dementia will experience pain at some point. Be proactive early in the disease process to help ensure pain is not left untreated. Familiarize yourself with the PAINAD scale. Be prepared to advocate for your loved one through caregiver education and physician visits. Review advocacy tips.
  • Look
    Watch for common causes of pain. Look, touch, listen and think about the different types of pain your loved one may be experiencing. Inspect your loved one's mouth for oral sores due to decay or ill-fitting dentures. Inspect feet for skin lesions or issues from ingrown toenails. Do you see your loved one wince or guard against gentle pressing on the abdomen? Feel large joints, like knees and hands. Do they feel warm or is one swollen? Does your loved one appear more comfortable in certain positions?
  • Treat
    Review nonmedication treatment options and incorporate these into your care. Bring music from their youth, massage sore joints or color together. Talk with the health care team about any concerns and if medications are necessary.
  • Avoid comparisons
    It's easy to compare your loved ones today to past selves. This is not helpful and should be avoided. People with dementia don't process pain in the same way they did before their diagnoses. Your loved one may have bragged about having a high pain tolerance in the past but is experiencing pain differently now. Medications and other treatments may be necessary.
  • Revisit
    Treatments that worked last week may not work today. A few "good days" does not mean the pain is under control over the long term. Consistently revisit the types of pain, treatments, positioning, time of day and other factors affecting your loved one's pain.

Advocacy tips

Caregivers play an important role in advocating for their loved ones' pain management, especially if they cannot advocate for themselves.

Follow these tips when navigating appointments, hospital stays and long-term care needs:

  • Attend all appointments or hospital rounds.
  • Write down questions and topics you want to discuss with the care team.
  • For sensitive topics, send questions to the care team before the appointment or ask to speak in private.
  • Ask about the different types of pain and explain previous injuries or chronic conditions that could contribute to pain levels.
  • Document your loved one's baseline functionality and the changes you witness.
  • Document pain levels often and note the time of day, position, mood, etc.
  • Make sure your loved one wears needed eyeglasses, dentures, hearing aids or other assisted devices.
  • Bring comfort items, like your loved one's favorite blanket, to appointments.

Most patients with moderate to severe dementia, including Alzheimer's disease, experience pain. Work with your loved one's care team to get the pain under control. This will increase comfort and peace of mind while decreasing outbursts, aggression, withdrawal and delirium.

Jennifer Winegarden, D.O., is a physician in Palliative Care in La Crosse, Wisconsin.

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Black History Month: Dr. Floyd Willis on the importance of inclusive Alzheimer’s Disease research https://newsnetwork.mayoclinic.org/discussion/black-history-month-dr-floyd-willis-on-the-importance-of-inclusive-alzheimers-disease-research/ Thu, 16 Feb 2023 14:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=359660 Black History Month is a month for all people to celebrate and learn about the diverse and important contributions of Black Americans to American society and culture, as well as to reflect on the ongoing fight against racism, inequity and discrimination. Mayo Clinic News Network is profiling Mayo Clinic physicians who are focused every day […]

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Portrait of Dr. Floyd Willis, Florida family medicine physician and investigator for the Mayo Clinic Alzheimer's Disease Research Center in Jacksonville, Florida.
Dr. Floyd Willis

Black History Month is a month for all people to celebrate and learn about the diverse and important contributions of Black Americans to American society and culture, as well as to reflect on the ongoing fight against racism, inequity and discrimination.

Mayo Clinic News Network is profiling Mayo Clinic physicians who are focused every day on achieving health equity through their work.

Meet Dr. Floyd Willis, a family medicine physician and investigator at the Mayo Clinic Alzheimer's Disease Research Center. He is dedicated to connecting minority patients to research, clinical trials and care.

Watch: Black History Month - Dr. Floyd Willis on the importance of inclusive Alzheimer's Disease research

Journalists: Broadcast-quality video (2:27) is in the downloads at the end of this post. Please "Courtesy: Mayo Clinic News Network." Read the script.

"Many describe Alzheimer's and other memory loss diseases as the silent killer," Dr. Floyd Willis says. "It can insidiously creep into your family or your neighborhood."

Dr. Willis has been a practicing family medicine physician for more than 30 years. He's drawn to problem-solving, particularly ones that have a community-wide impact.

Dr. Floyd Willis, wearing a stethoscope, receives a diploma from an unidentified person at the 1989 Mayo Graduate School of Medicine commencement.
Dr. Floyd Willis in 1989 at the Mayo Graduate School of Medicine commencement.

"Black people in America are about twice as likely to get Alzheimer's disease and other memory loss disorders — and there are interesting and complicated reasons behind that," Dr. Willis says.

Connecting the community to solutions is why he has helped the Mayo Clinic Alzheimer's Disease Research Center in Jacksonville, Florida, recruit participants into research studies.

"It's extremely important to understand how we can predict who might get it and, if possible, discover early treatments for (Alzheimer's disease)," Dr. Willis says.

High blood pressure, diabetes and obesity have been linked to an increased risk of Alzheimer's disease — factors that are also disproportionately higher in Black Americans.

"Often, communities are unaware that treating those chronic diseases and keeping the body healthy also keeps the brain healthy," Dr. Willis says. "It's important that we get this information out, as it may be a way to reduce some of this increased risk for African Americans."

The Alzheimer's Disease Research Center's outreach in Jacksonville's historically Black communities revealed a deeper understanding of cultural barriers.

Dr. Floyd Willis in a pink tie and gray suit gives a presentation in 2016 at Mayo Clinic in Florida.
Dr. Floyd Willis presenting in 2016 at Mayo Clinic in Florida.

"It's key to build trust for someone to reveal all of these very personal things about their mind, their brain, their thought, which some people equate to their spirituality," Dr. Willis says. "Once you can convince people that, yes, you can trust the system, and yes, memory loss is something that we should talk about — it's not just a thing that happens to everyone, as they get older — some of it can be prevented."

Dr. Willis says a change in memory doesn't automatically mean a diagnosis of Alzheimer's disease.

"The things that can affect the heart and the things that can affect the kidneys can also affect the brain," Dr. Willis says. "Work with a primary care physician to get all of those things that injure the arteries under control."

In his decades of outreach and advocacy, Dr. Willis says what drives progress is diverse representation — from patients and study participants to researchers and physicians — and "...partnering with the community."

"Involving the community in the work that (researchers) are doing, asking them what they find important, what they want us to study, and then try to put your priorities in with them," he says.

Related posts:


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6 tips to keep your brain healthy https://newsnetwork.mayoclinic.org/discussion/6-tips-to-keep-your-brain-healthy/ Wed, 11 Jan 2023 14:00:00 +0000 https://newsnetwork.mayoclinic.org/?p=357277 Changes to your body and brain are normal as you age. However, there are some things you can do to help slow any decline in memory and lower your risk of developing Alzheimer's disease or other dementias. Here are six things I recommend to my patients in order of importance: 1. Exercise regularly. Exercise has […]

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Changes to your body and brain are normal as you age. However, there are some things you can do to help slow any decline in memory and lower your risk of developing Alzheimer's disease or other dementias.

Here are six things I recommend to my patients in order of importance:

1. Exercise regularly.

Exercise has many known benefits, and regular physical activity also benefits the brain. Multiple research studies show that physical active people are less likely to experience a decline in their mental function and have a lower risk of developing Alzheimer's disease.

These benefits result from increased blood flow to your brain during exercise. It also tends to counter some of the natural reduction in brain connections that occur during aging, reversing some of the problems.

Aim to exercise several times per week for 30 to 60 minutes. You can walk, swim, play tennis or do any other moderate aerobic activity that increases your heart rate.

2. Get plenty of sleep.

Sleep plays an important role in your brain health. Some theories state that sleep helps clear abnormal proteins in your brain and consolidates memories, which boosts your overall memory and brain health.

Aim for seven to eight consecutive hours of sleep per night, not fragmented sleep of two- or three-hour increments. Consecutive sleep gives your brain the time to consolidate and store your memories effectively. Sleep apnea harms your brain's health and could be why you may struggle to get consecutive hours of sleep. Talk with your health care team if you or a loved one suspects you have sleep apnea.

3. Eat a Mediterranean diet.

Your diet plays a large role in your brain health. Consider following a Mediterranean diet, which emphasizes plant-based foods, whole grains, fish and healthy fats, such as olive oil. It incorporates less red meat and salt than a typical American diet.

Studies show people who closely follow a Mediterranean diet are less likely to have Alzheimer's disease than people who don't follow the diet. Further research is needed to determine which parts of the diet help brain function the most. However, we know that omega fatty acids found in extra-virgin olive oil and other healthy fats are vital for your cells to function correctly, appear to decrease your risk of coronary artery disease, increase mental focus and slow cognitive decline in older adults.

4. Stay mentally active.

Your brain is similar to a muscle — you need to use it or lose it. There are many things that you can do to keep your brain in shape, such as doing crossword puzzles or Sudoku, reading, playing cards or putting together a jigsaw puzzle. Consider it cross-training your brain. Incorporate different types of activities to increase the effectiveness.

Most health care teams don't recommend the paid brain-training programs available. These programs often overpromise results or focus on memorization skills that aren't useful in everyday life. Your brain can get just as good of a workout through reading or challenging yourself with puzzles. Finally, don't watch too much TV, as that is a passive activity and does little to stimulate your brain.

5. Remain socially involved.

Social interaction helps ward off depression and stress, which can contribute to memory loss. Look for opportunities to connect with loved ones, friends and others, especially if you live alone. Research links solitary confinement to brain atrophy, so remaining socially active may have the opposite effect and strengthen the health of your brain.

6. Keep your blood vessels healthy.

The health of your arteries and veins is important to your heart health but it is also critical for brain health. Get your blood pressure, blood sugar and cholesterol checked regularly and take steps to keep your numbers within a normal range.

Increase your physical activity, eat a Mediterranean diet and decrease your sodium consumption to lower blood pressure and cholesterol values. Finally, tobacco and alcohol use are impactful on brain health as well, so only drink alcohol in moderation and don't smoke. Moderate drinking is defined as up to one drink per day for women and up to two drinks per day for men.

Kelsey Kidd is a nurse practitioner in Neurology in Mankato, Minnesota.

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Mayo Clinic expert provides perspective on FDA approval of another experimental Alzheimer’s drug https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-expert-provides-perspective-on-fda-approval-of-another-experimental-alzheimers-drug/ Fri, 06 Jan 2023 19:50:58 +0000 https://newsnetwork.mayoclinic.org/?p=356632 The Food and Drug Administration (FDA) granted accelerated approval of a disease-modifying treatment that could potentially give some patients with Alzheimer's disease something they haven’t had before: a medication that may slow the decline of memory and thinking. A monoclonal antibody, lecanemab, shows promise in removing amyloid plaques from the brain, according to phase 3 […]

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a black and white photo of family members gathered around an elderly woman who is highlighted in the picture, looking a little bit sad and weak, perhaps sick and maybe having dementia or Alzheimer's

The Food and Drug Administration (FDA) granted accelerated approval of a disease-modifying treatment that could potentially give some patients with Alzheimer's disease something they haven’t had before: a medication that may slow the decline of memory and thinking.

A monoclonal antibody, lecanemab, shows promise in removing amyloid plaques from the brain, according to phase 3 trial results. Amyloid plaques are one of the defining features of Alzheimer's disease, according to Dr. Ronald Petersen, a neurologist and director of the Mayo Clinic Alzheimer's Disease Research Center.

Watch: Dr. Petersen discusses FDA approval

Journalists: Broadcast-quality video is available in the downloads at the end of the post. Please courtesy: Mayo Clinic News Network. Name super/CG: Ronald Petersen, M.D., Ph.D./Alzheimer's Disease Research Center/Mayo Clinic.

"Amyloid is one of the key proteins involved in Alzheimer's disease. It's thought that by removing amyloid from the brain, you will slow down the rate of progression of the disease. Now, importantly, it doesn't stop the disease. It doesn't make people better, but it will slow down the rate at which the disease progresses so people remain functional for a longer period of time," says Dr. Petersen.

Brain changes associated with Alzheimer's disease can lead to growing trouble with:

  • Memory
  • Thinking and reasoning
  • Making judgments and decisions
  • Planning and performing familiar tasks
  • Changes in personality and behavior

Dr. Petersen explains what "accelerated" FDA approval means.

"The accelerated approval part means that while they're convinced it does what it's supposed to do, biologically, they're not convinced of the clinical meaningfulness of that. That is, if you lower amyloid in the brain of a person with Alzheimer's disease, does that make any clinical difference? They're uncertain of that so they require the sponsor to gather more data," he says.

Phase 3 data, reported in late November, will be submitted to the FDA later this year for full approval.

Dr. Petersen says it’s important to note that this treatment is not intended for all dementia patients, only those who have mild cognitive impairment or mild dementia due to Alzheimer's disease.

As with any drug, Dr. Petersen says lecanemab has potential side effects which can be serious.

"Lecanemab does, in fact, remove amyloid from the brain, but it may also remove amyloid from the blood vessels in the brain," he explains. "This may render them leaky, such that people on this drug may develop some swelling in the brain and may develop some bleeding in the brain. This can be monitored by MRI, and usually the side effects have been mild and moderate."

Dr. Petersen says the data from the lecanemab study were an important step forward in the fight against a disease which robs patients of their most human qualities.

"It shows that we now may have the ability to actually modify the underlying disease process. Heretofore, we've had symptomatic drugs for Alzheimer's disease, but they do not actually get at the underlying disease process. Drugs like lecanemab now actually alter the disease process itself and will slow down the rate of progression. That's a major step forward," says Dr. Petersen.

"This gives us an opportunity to perhaps add other drugs that may have additive mechanisms of action to actually slow down the disease process even more dramatically."

Disclosures:

Dr. Petersen has previously consulted with Biogen and Eisai, makers of lecanemab. He was not involved in the design or execution of clinical trials for lecanemab.

Read more about Alzheimer's disease and dementia:

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Mayo Clinic Minute: Music on the brain https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-music-on-the-brain/ Tue, 04 Oct 2022 13:30:00 +0000 https://newsnetwork.mayoclinic.org/?p=314247 Music soothes, energizes and inspires. It also fortifies pathways in your brain that neurologists say can lead to a better understanding of cognition and dementia. To help better understand how music strengthens the brain, Dr. Bernard Bendok, chair of the Department of Neurosurgery at Mayo Clinic in Arizona, explains how music strikes a chord with researchers. Note: […]

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Music soothes, energizes and inspires. It also fortifies pathways in your brain that neurologists say can lead to a better understanding of cognition and dementia. To help better understand how music strengthens the brain, Dr. Bernard Bendok, chair of the Department of Neurosurgery at Mayo Clinic in Arizona, explains how music strikes a chord with researchers.

Note: Music composed by the musician and free to use.

Watch: The Mayo Clinic Minute

Journalists: Broadcast-quality video (1:00) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"One of the higher functions that a human brain can engage with is the performance of music," says Dr. Bendok. "As you master those instruments, there are certain connections that grow and get enhanced in the brain. The brain likes to be challenged. We know that the more languages you know, the less your risk of dementia. And music happens to be a language."

"Understanding music allows neurologists and neurosurgeons and neuroscientists to better understand the brain," continues Dr. Bendok. "It's a great way to better map the brain, both for enhancing the safety of surgery, but also for exploring new avenues for new therapies for various conditions of the human brain, including degenerative diseases and memory problems. By understanding these pathways that contribute to musical memory and cognitive memory, this will allow us to solve the problems of degeneration like dementia, but also open new opportunities to enhance function."


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Mayo Clinic expert offers perspective on experimental Alzheimer’s disease drug https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-expert-offers-perspective-on-experimental-alzheimers-disease-drug/ Thu, 29 Sep 2022 16:15:51 +0000 https://newsnetwork.mayoclinic.org/?p=349645 According to drugmakers Eisai and Biogen, a Phase 3 clinical study on a potential new Alzheimer's disease drug shows promise. The study findings show that the drug, lecanemab, reduced clinical decline of people with Alzheimer's disease by 27% compared with a placebo after 18 months of treatment. "This is very good news for Alzheimer's disease patients and their […]

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Alzheimer's medical illustration of amyloid plaques

According to drugmakers Eisai and Biogen, a Phase 3 clinical study on a potential new Alzheimer's disease drug shows promise. The study findings show that the drug, lecanemab, reduced clinical decline of people with Alzheimer's disease by 27% compared with a placebo after 18 months of treatment.

"This is very good news for Alzheimer's disease patients and their families," says Dr. Ronald Petersen, a neurologist and director of Mayo Clinic's Alzheimer's Disease Research Center. "While this is not a cure for the disease, it represents a step in the right direction by slowing cognitive decline."

A monoclonal antibody, lecanemab shows promise in removing amyloid plaques from the brain. Plaques are one of the defining features of Alzheimer's disease.

Dr. Petersen adds: "These data suggest that we can intervene on the amyloid process and slow it down. Now, we need to move earlier in the disease process to treat people who are amyloid positive but clinically normal."

The study included 1,795 participants with early Alzheimer's disease in Japan, the U.S., Europe and China. 

The drugmaker has requested accelerated approval from the Food and Drug Administration (FDA). The study results will be presented at the Clinical Trials on Alzheimer's Congress (CTAD) in November and is expected to be published in a peer-reviewed medical journal.

"We look forward to additional data from this study and other studies investigating disease-modifying therapies that will attack the underlying disease process itself," says Dr. Petersen.

Alzheimer's disease is a progressive neurological disorder affecting about 6 million people in the U.S and over 55 million people worldwide. This number is projected to rise to 139 million globally by 2050. Alzheimer’s disease is the most common cause of dementia.

Brain changes associated with Alzheimer's disease can lead to growing trouble with:

  • Memory
  • Thinking and reasoning
  • Making judgments and decisions
  • Planning and performing familiar tasks
  • Changes in personality and behavior

There is no cure for Alzheimer's disease. Medication may temporarily improve or slow progression of symptoms. 

On average, people with Alzheimer's live between three to 11 years after diagnosis, though some may survive for more than 20 years.  

In the study, brain swelling was seen in 12.5% of those who received the medication, compared to 1.7% in the placebo group, according to the drugmakers. Many of those patients, however, did not experience any related symptoms. Of those in the lecanemab group, 2.8% experienced symptoms. The frequency of brain hemorrhages was 17% in the lecanemab group and 8.7% in the placebo group, with very low rates of symptomatic hemorrhages.

Overall, the frequency of bleeding or swelling in the brain was 21.3% in the treated group compared to 9.3% in the placebo group. The prevalence of the side effects was lower than in similar experimental drugs. With monitoring by a physician, these side effects appeared to be manageable.

The drugmaker has requested accelerated approval from the U.S. Food and Drug Administration (FDA). The study results will be presented at the Clinical Trials on Alzheimer's Congress (CTAD) in November and is expected to be published in a peer-reviewed medical journal.

Disclosures

Dr. Petersen has previously consulted with Biogen and Eisai. He was not involved in the design or execution of clinical trials for lecanemab.

Read more about Alzheimer's disease and dementia:

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