Judith Graham
Tue, 28 May 2024 09:00:00 +0000

Caring for older adults with dementia is stressful, especially when they become physically or verbally aggressive, wander away from home, develop paranoia or hallucinations, engage in inappropriate or repetitive behaviors, or refuse to let caregivers help them.

Upward of 95% of patients experience these neuropsychiatric symptoms of dementia, which tend to fluctuate over time and vary in intensity. They're the primary reasons people with dementia end up in assisted living facilities or nursing homes. At some point, families and friends trying to help at home simply can't manage.

“When people think about dementia, they usually think about forgetfulness and memory impairment,” said Mary Blazek, director of the geriatric psychiatry clinic at the University of Michigan. “But it's behavioral and psychological disturbances that are most disruptive to patients' and caregivers' lives.”

Now, help is available from a first-of-its-kind website created by prominent experts in this field. It offers free training in a comprehensive approach to managing neuropsychiatric symptoms of dementia — a method known as DICE — based on several decades of scientific research as well as extensive clinical practice.

The website's goal is to “give people tools to better manage often-distressing situations,” said Helen Kales, chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health in Sacramento, California, and one of DICE's creators. Users learn that neuropsychiatric symptoms are caused by changes in the brain that increase people's vulnerability. Nine video modules and two simulations provide comprehensive information and problem-solving techniques.

More than 16 million unpaid caregivers — primarily family members and friends — help people with dementia live at home. (An estimated 20% of patients live in institutional settings.) The most common form of dementia, Alzheimer's disease, affects nearly 7 million Americans 65 and older.

DICE is also designed to help “avoid the knee-jerk prescribing of psychoactive medications” that have potentially serious side effects, Kales said. Several medical organizations recommend that non-pharmaceutical approaches to troublesome behaviors be tried before drug therapy, but, in practice, this doesn't routinely happen.

Drugs prescribed for dementia include antipsychotic medications, such as Risperidone, which carry a black-box warning noting an increased risk of sooner-than-expected death in elderly patients; anticonvulsants, such as gabapentin, for which use has been on the rise despite concerns about safety; benzodiazepines, such as Ativan, which are associated with an increased risk of falls and, thus, fractures; and Celexa and other such antidepressants that have limited data supporting their effectiveness in easing dementia symptoms.

DICE is a mnemonic — a pattern of letters meant to serve as a memory aid — that stands for Describe, Investigate, Create, and Evaluate, the four pillars of this approach. At its core is an assumption people with dementia engage in disturbing behaviors for often-unrecognized reasons that can be addressed once they are understood.

Take an example on the website featuring Jennifer, a 55-year-old caregiver for her mother, Betty, 85, whom she tries to bathe daily in the late afternoon. When Betty resists getting into the tub, Jennifer insists, “Let's go! I have things to do.” Betty responds by smacking her and shouting, “Leave me alone. It hurts.”

DICE asks caregivers to step back from the heat of the moment and examine issues from three perspectives: the person with dementia, the caregiver, and the environment. All can contribute to distressing situations and all need to be considered in fashioning a response.

Examining the problem by using a “who, what, when, how, why” prompt can reveal several potential issues:

• The patient. Betty has arthritis and may experience pain getting in and out of the tub. She may feel tired and overwhelmed in the late afternoon.
• The caregiver. Jennifer may become easily frustrated when she encounters resistance — adopting a scolding and commanding tone rather than breaking down what Betty needs to do in simple steps.
• The environment. The bathroom tends to be cold, with overly bright lights, tepid bathwater, and no grab bars around the tub.

Some possible solutions discussed on the website: Offer Betty an over-the-counter pain reliever before her bath. Try baths in the morning, not the afternoon. Relax expectations that she'll have a daily bath and offer sponge baths several times a week. Install grab bars around the tub, and make sure the water temperature is comfortable. Use a nicely scented soap and play music to help Betty relax. Speak calmly, making simple statements.

These embody strategies shown to improve neuropsychiatric symptoms associated with dementia: recognizing and addressing underlying medical issues such as pain, infections, or delirium; simplifying the tasks a person with dementia is expected to perform; and establishing daily routines that give structure to the day.

Other important steps: Engage the person in activities that are meaningful to them, including social interactions. Reduce clutter and the potential for overstimulation in the environment. Make sure the person is using hearing or vision aids, if needed. Get them outside and exposed to light.

If safety, psychosis, or major depression are urgent concerns, then consider using psychoactive medications after consulting a physician.

Of course, this isn't a comprehensive list of recommendations. Nor is it prescriptive. What works for one person with dementia may not work for another.

Using DICE is an iterative process that involves creativity and frequent evaluation to assess whether strategies are working, Kales said. If not, new interventions should be tried.

Although this is the first time family caregivers can access the DICE toolkit, the program has been available to health care professionals for a while. Notably, all of Wisconsin's dementia care specialists have been trained in DICE over the past few years (every county in that state has a specialist who helps families with dementia).

“It's a really pragmatic approach that's put together in a very thoughtful fashion,” said Art Walaszek, a professor of psychiatry and medicine at the University of Wisconsin School of Medicine and Public Health who's been involved in that effort.

Other dementia training programs are available, some of which review behavioral and psychiatric symptoms in less depth, and they, too, are increasingly available online. Another valuable resource, Best Programs for Caregiving, launched in March, lists evidence-based programs across the country and their availability. Enter a ZIP code to find information that previously hasn't been assembled in one place. This site, too, is very much worth consulting.

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

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By: Judith Graham
Title: New Help for Dealing With Aggression in People With Dementia
Sourced From: kffhealthnews.org/news/article/dementia-aggression-caregiver-resources-help/
Published Date: Tue, 28 May 2024 09:00:00 +0000

Rae Ellen Bichell
Fri, 24 May 2024 09:00:00 +0000

The federal government in 2020 and 2023 changed who it said could safely donate organs and blood, reducing the restrictions on men who have had sex with another man.

But the FDA's restrictions on donated tissue, a catchall term encompassing everything from a person's eyes to their skin and ligaments, remain in place. Advocates, lawmakers, and groups focused on removing barriers to cornea donations, in particular, said they are frustrated the FDA hasn't heeded their calls. They want to align the guidelines for tissue donated by gay and bisexual men with those that apply to the rest of the human body.

Such groups have been asking the FDA for years to reduce the deferral period from five years to 90 days, meaning a man who has had sex with another man would be able to donate tissue as long as such sex didn't occur within three months of his death.

One of the loudest voices on lightening the restrictions is Sheryl J. Moore, who has been an advocate since her 16-year-old son's death in 2013. Alexander “AJ” Betts Jr.'s internal organs were successfully donated to seven people, but his eyes were rejected because of a single question asked by the donor network: “Is AJ gay?”

Moore and a Colorado doctor named Michael Puente Jr. started a campaign called “Legalize Gay Eyes” and together got the attention of national eye groups and lawmakers.

Puente, a pediatric ophthalmologist with the University of Colorado School of Medicine and Children's Hospital Colorado, said the current patchwork of donor guidelines is nonsensical considering advancements in the ability to test potential donors for HIV.

“A gay man can donate their entire heart for transplant, but they cannot donate just the heart valve,” said Puente, who is gay. “It's essentially a categorical ban.”

The justification for these policies, set 30 years ago as a means of preventing HIV transmission, has been undercut by the knowledge gained through scientific progress. Now, they are unnecessary and discriminatory in that they focus on specific groups of people rather than on specific behaviors known to heighten HIV risk, according to those who advocate for changing them.

Since 2022, the FDA's Center for Biologics Evaluation and Research has put changes to the tissue guidance on its agenda but has yet to act on them.

“It is simply unacceptable,” Rep. Joe Neguse (D-Colo.) said in a statement. He was one of dozens of Congress members who signed a letter in 2021 that said the current deferral policies perpetuate stigma against gay men and should be based on individualized risk assessments instead.

“FDA policy should be derived from the best available science, not historic bias and prejudice,” the letter read.

The FDA said in a statement to KFF Health News that, “while the absolute risk transmission of HIV due to ophthalmic surgical procedures appears to be remote, there are still relative risks.”

The agency routinely reviews donor screening and testing “to determine what changes, if any, are appropriate based on technological and evolving scientific knowledge,” the statement said. The FDA provided a similar response to Neguse in 2022.

In 2015, the FDA got rid of a policy dubbed the “blood ban,” which barred gay and bisexual men from donating blood, before replacing it in 2023 with a policy that treats all prospective donors the same. Anyone who, in the past three months, has had anal sex and a new sexual partner or more than one sexual partner is not allowed to donate. An FDA study found that, while men who have sex with men make up most of the nation's new HIV diagnoses, a questionnaire was enough to effectively identify low-risk versus high-risk donors.

The U.S. Public Health Service adjusted the guidelines for organ donation in 2020. Nothing prevents sexually active gay men from donating their organs, though if they've had sex with another man in the past 30 days — down from a year — the patient set to receive the organ can decide whether or not to accept it.

But Puente said gay men like him cannot donate their corneas unless they were celibate for five years prior to their death.

He found that, in one year alone, at least 360 people were rejected as cornea donors because they were men who had had sex with another man in the past five years, or in the past year in the case of Canadian donors.

Corneas are the clear domes that protect the eyes from the outside world. They have the look and consistency of a transparent jellyfish, and transplanting one can restore a person's sight. They contain no blood, nor any other bodily fluid capable of transmitting HIV. Scientists suspect that's why there are no known cases of a patient contracting HIV from a cornea transplant, even when those corneas came from donors of organs that did infect recipients.

Currently, all donors, whether of blood, organs, or tissue, are tested for HIV and two types of hepatitis. Such tests aren't perfect: There is still what scientists call a “window period” following infection during which the donor's body has not yet produced a detectable amount of virus.

But such windows are now quite narrow. Researchers with the Centers for Disease Control and Prevention found that nucleic acid tests, which are commonly used to screen donors, are unlikely to miss someone having HIV unless they acquired it in the two weeks preceding donation. Another study estimated that even if someone had sex with an HIV-positive person a couple of weeks to a month before donating, the odds are less than 1 in a million that a nucleic acid test would miss that infection.

“Very low, but not zero,” said Sridhar Basavaraju, who was one of the researchers on that study and directs the CDC's Office of Blood, Organ, and Other Tissue Safety. He said the risk of undetected hepatitis B is slightly higher “but still low.”

At least one senior FDA official has indirectly agreed. Peter Marks, who directs the FDA's Center for Biologics Evaluation and Research, co-authored a report last year that said “three months amply covers” the window period in which someone might have the virus but at levels too low for tests to pick up. Scott Haber, director of public health advocacy at the American Academy of Ophthalmology, said his group's stance is that the tissue donation guideline “should be at least roughly in alignment” with that for blood donations.

Kevin Corcoran, who leads the Eye Bank Association of America, said the five-year abstinence required of corneal donors who are gay or bisexual isn't just “badly out of date” but also impractical, requiring grieving relatives to recall five years of their loved one's sexual history.

That's the situation Moore found herself in on a July day in 2013.

Her son loved anime, show tunes, and drinking pop out of the side of his mouth. He was bad at telling jokes but good at helping people: Betts once replaced his little sister's lost birthday money with his own savings, she said, and enthusiastically chose to be an organ donor when he got his driver's license. Moore remembered telling her son to ignore the harassment by antigay bigots at school.

“The kids in show choir had told him he's going to hell for being gay, and he might as well just kill himself to save himself the time,” she recalled.

That summer, he did. At the hospital, as medical staff searched for signs of brain activity in the boy before he died, Moore found herself answering a list of questions from Iowa Donor Network, including, she recalled: “Is AJ gay?”

“I remember very vividly saying to them, ‘Well, what do you mean by, “Was he gay?” I mean, he's never had penetrative sex,'” she said. “But they said, ‘We just need to know if he was gay.' And I said, ‘Yes, he identified as gay.'”

The Iowa Donor Network said in a statement that the organization can't comment on Moore's case, but said, “We sincerely hope for a shift in FDA policy to align with the more inclusive approach seen in blood donation guidelines, enabling us to honor the decision of all individuals who want to save lives through organ and tissue donation.”

Moore said her son's organs helped save or prolong the lives of seven other people, including a boy who received his heart and a middle-aged woman who received his liver. Moore sometimes exchanges messages with her on Facebook.

She found out a year later that her son's corneas were rejected as donor tissue because of that conversation with Iowa Donor Network about her son's sexuality.

“I felt like they wasted my son's body parts,” Moore said. “I very much felt like AJ was continuing to be bullied beyond the grave.”

——————————
By: Rae Ellen Bichell
Title: FDA Urged To Relax Decades-Old Tissue Donation Restrictions for Gay and Bisexual Men
Sourced From: kffhealthnews.org/news/article/tissue-donation-rules-fda-gay-bisexual-men-cornea-transplant/
Published Date: Fri, 24 May 2024 09:00:00 +0000

Did you miss our previous article…
https://www.biloxinewsevents.com/the-case-of-the-armadillo-is-it-spreading-leprosy-in-florida/

Sam Ogozalek, Tampa Bay Times
Fri, 24 May 2024 09:00:00 +0000

GAINESVILLE, Fla. — In an open-air barn at the edge of the University of Florida, veterinarian Juan Campos Krauer examines a dead armadillo's footpads and ears for signs of infection.

Its claws are curled tight and covered in blood. Campos Krauer thinks it was struck in the head while crossing a nearby road.

He then runs a scalpel down its underside. He removes all the important organs: heart, liver, kidneys. Once the specimens are bottled up, they're destined for an ultra-cold freezer in his lab at the college.

Campos Krauer plans to test the armadillo for leprosy, an ancient illness also known as Hansen's disease that can lead to nerve damage and disfigurement in humans. He and other scientists are trying to solve a medical mystery: why Central Florida has become a hot spot for the age-old bacteria that cause it.

Leprosy remains rare in the United States. But Florida, which often reports the most cases of any state, has seen an uptick in patients. The epicenter is east of Orlando. Brevard County reported a staggering 13% of the nation's 159 leprosy cases in 2020, according to a Tampa Bay Times analysis of state and federal data.

Many questions about the phenomenon remain unanswered. But leprosy experts believe armadillos play a role in spreading the illness to people. To better understand who's at risk and to prevent infections, about 10 scientists teamed up last year to investigate. The group includes researchers from the University of Florida, Colorado State University, and Emory University in Atlanta.

“How this transmission is happening, we really don't know,” said Ramanuj Lahiri, chief of the laboratory research branch for the National Hansen's Disease Program, which studies the bacteria involved and cares for leprosy patients across the country.

‘Nothing Was Adding Up'

Leprosy is believed to be the oldest human infection in history. It probably has been sickening people for at least 100,000 years. The disease is highly stigmatized — in the Bible, it was described as a punishment for sin. In more modern times, patients were isolated in “colonies” around the world, including in Hawaii and Louisiana.

In mild cases, the slow-growing bacteria cause a few lesions. If left untreated, they can paralyze the hands and feet.

But it's actually difficult to fall ill with leprosy, as the infection isn't very contagious. Antibiotics can cure the ailment in a year or two. They're available for free through the federal government and the World Health Organization, which launched a campaign in the 1990s to eliminate leprosy as a public health problem.

In 2000, reported U.S. cases dropped to their lowest point in decades with 77 infections. But they later increased, averaging about 180 per year from 2011 to 2020, according to data from the National Hansen's Disease Program.

During that time, a curious trend emerged in Florida.

In the first decade of the 21st century, the state logged 67 cases. Miami-Dade County noted 20 infections — the most of any Florida county. The vast majority of its cases were acquired outside the U.S., according to a Times analysis of Florida Department of Health data.

But over the next 10 years, recorded cases in the state more than doubled to 176 as Brevard County took center stage.

The county, whose population is about a fifth the size of Miami-Dade's, logged 85 infections during that time — by far the most of any county in the state and nearly half of all Florida cases. In the previous decade, Brevard noted just five cases.

Remarkably, at least a quarter of Brevard's infections were acquired within the state, not while the individuals were abroad. India, Brazil, and Indonesia diagnose more leprosy cases than anywhere, reporting over 135,000 infections combined in 2022 alone. People were getting sick even though they hadn't traveled to such areas or been in close contact with existing leprosy patients, said Barry Inman, a former epidemiologist at the Brevard health department who investigated the cases and retired in 2021.

“Nothing was adding up,” Inman said.

A few patients recalled touching armadillos, which are known to carry the bacteria. But most didn't, he said. Many spent a lot of time outdoors, including lawn workers and avid gardeners. The cases were usually mild.

It was difficult to nail down where people got the illness, he added. Because the bacteria grow so slowly, it can take anywhere from nine months to 20 years for symptoms to begin.

Amoeba or Insect Culprits?

Heightened awareness of leprosy could play a role in Brevard's groundswell of cases.

Doctors must report leprosy to the health department. Yet Inman said many in the county didn't know that, so he tried to educate them after noticing cases in the late 2000s.

But that's not the sole factor at play, Inman said.

“I don't think there's any doubt in my mind that something new is going on,” he said.

Other parts of Central Florida have also recorded more infections. From 2011 to 2020, Polk County logged 12 cases, tripling its numbers compared with the previous 10 years. Volusia County noted 10 cases. It reported none the prior decade.

Scientists are honing in on armadillos. They suspect the burrowing critters may indirectly cause infections through soil contamination.

Armadillos, which are protected by hard shells, serve as good hosts for the bacteria, which don't like heat and can thrive in the animals whose body temperatures range from a cool 86-95 degrees.

Colonists probably brought the disease to the New World hundreds of years ago, and somehow armadillos became infected, said Lahiri, the National Hansen's Disease Program scientist. The nocturnal mammals can develop lesions from the illness just as humans can. More than 1 million armadillos occupy Florida, estimated Campos Krauer, an assistant professor in the University of Florida's Department of Large Animal Clinical Sciences.

How many carry leprosy is unclear. A study published in 2015 of more than 600 armadillos in Alabama, Florida, Georgia, and Mississippi found that about 16% showed evidence of infection. Public health experts believe leprosy was previously confined to armadillos west of the Mississippi River, then spread east.

Handling the critters is a known hazard. Lab research shows that single-cell amoebas, which live in soil, can also carry the bacteria.

Armadillos love to dig up and eat earthworms, frustrating homeowners whose yards they damage. The animals may shed the bacteria while hunting for food, passing it to amoebas, which could later infect people.

Leprosy experts also wonder if insects help spread the disease. Blood-sucking ticks might be a culprit, lab research shows.

“Some people who are infected have little to no exposure to the armadillo,” said Norman Beatty, an assistant professor of medicine at the University of Florida. “There is likely another source of transmission in the environment.”

Campos Krauer, who's been searching Gainesville streets for armadillo roadkill, wants to gather infected animals and let them decompose in a fenced-off area, allowing the remains to soak into a tray of soil while flies lay eggs. He hopes to test the dirt and larvae to see if they pick up the bacteria.

Adding to the intrigue is a leprosy strain found only in Florida, according to scientists.

In the 2015 study, researchers discovered that seven armadillos from the Merritt Island National Wildlife Refuge, which is mostly in Brevard but crosses into Volusia, carried a previously unseen version of the pathogen.

Ten patients in the region were stricken with it, too. At the genetic level, the strain is similar to another type found in U.S. armadillos, said Charlotte Avanzi, a Colorado State University researcher who specializes in leprosy.

It's unknown if the strain causes more severe disease, Lahiri said.

Reducing Risk

The public should not panic about leprosy, nor should people race to euthanize armadillos, researchers warn.

Scientists estimate that over 95% of the global human population has a natural ability to ward off the disease. They believe months of exposure to respiratory droplets is needed for person-to-person transmission to occur.

But when infections do happen, they can be devastating.

“If we better understand it,” Campos Krauer said, “the better we can learn to live with it and reduce the risk.”

The new research may also provide insight for other Southern states. Armadillos, which don't hibernate, have been moving north, Campos Krauer said, reaching areas like Indiana and Virginia. They could go farther due to climate change.

People concerned about leprosy can take simple precautions, medical experts say. Those working in dirt should wear gloves and wash their hands afterward. Raising garden beds or surrounding them with a fence may limit the chances of soil contamination. If digging up an armadillo burrow, consider wearing a face mask, Campos Krauer said.

Don't play with or eat the animals, added John Spencer, a scientist at Colorado State University who studies leprosy transmission in Brazil. They're legal to hunt year-round in Florida without a license.

Campos Krauer's team has so far examined 16 dead armadillos found on Gainesville area roads, more than 100 miles from the state's leprosy epicenter, trying to get a preliminary idea of how many carry the bacteria.

None has tested positive yet.

This article was produced through a partnership between KFF Health News and the Tampa Bay Times.

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By: Sam Ogozalek, Tampa Bay Times
Title: The Case of the Armadillo: Is It Spreading Leprosy in Florida?
Sourced From: kffhealthnews.org/news/article/leprosy-armadillo-florida-cases-on-rise-research/
Published Date: Fri, 24 May 2024 09:00:00 +0000