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New Help for Dealing With Aggression in People With Dementia

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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.

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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 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 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.

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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.

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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.

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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.

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

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KFF Health News’ ‘What the Health?’: SCOTUS Term Wraps With a Bang

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Wed, 03 Jul 2024 14:30:00 +0000

The Host

Julie Rovner
KFF


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF ' weekly health policy news , “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

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It was a busy year for health-related cases at the Supreme Court. Among other issues, the justices grappled with two abortion cases, a separate case touching on the opioid epidemic, and a case challenging whether localities can bar homeless people from sleeping in public spaces. Also, the court struck down a decades-old precedent that could dramatically change how the federal government oversees health care and other types of policy.

In this special episode of “What the Health?”, Sarah Somers, legal director of the National Health Law Program, joins KFF Health News' chief Washington correspondent, Julie Rovner, to discuss how the justices disposed of the term's health-related cases and what those decisions could mean going forward.

A Summary of the Cases

On the functioning of government:

Loper Bright Enterprises v. Raimondo, challenging the “Chevron doctrine” that required courts to defer in most cases to the expertise of federal agencies in interpreting laws passed by Congress.

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Corner Post Inc. v. Board of Governors of the Federal Reserve System, challenging the statute of limitations for bringing a case against a federal agency's actions.

On abortion:

Food and Drug Administration v. Alliance for Hippocratic Medicine, challenging the FDA's approval of the abortion pill mifepristone.

Moyle v. United States and Idaho v. United States, about whether the federal Emergency Medical Treatment and Active Labor Act requirement that hospitals participating in Medicare provide the care needed to stabilize a patient's condition overrides Idaho's near-complete abortion ban when a pregnant patient experiences a medical emergency.

On other health issues:

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Harrington v. Purdue Pharma, about whether federal bankruptcy law can shield an entity from future claims without the consent of all claimants.

City of Grants Pass v. Johnson, about whether banning sleeping in public subjects those with no other place to sleep to “cruel and unusual punishment” under the U.S. Constitution.

Previous “What the Health?” Coverage of These Cases:

SCOTUS Ruling Strips Power From Federal Health Agencies,” June 28

SCOTUS Rejects Abortion Pill Challenge — For Now,” June 13

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Waiting for SCOTUS,” May 30

Abortion — Again — At the Supreme Court,” April 25

The Supreme Court and the Abortion Pill,” March 28

Health Enters the Presidential Race,” Jan. 25

The Supreme Court vs. the Bureaucracy,” Jan. 18

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Credits

Francis Ying
Audio producer

Emmarie Huetteman
Editor

To hear all our , click here.

And subscribe to KFF Health News' “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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Title: KFF Health News' ‘What the Health?': SCOTUS Term Wraps With a Bang
Sourced From: kffhealthnews.org/news/podcast/what-the-health-354-supreme-court-term-wrap-july-3-2024/
Published Date: Wed, 03 Jul 2024 14:30:00 +0000

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Lack of Affordability Tops Older Americans’ List of Health Care Worries

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Judith Graham
Wed, 03 Jul 2024 09:00:00 +0000

What weighs most heavily on older adults' minds when it comes to care?

The cost of services and therapies, and their ability to pay.

“It's on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She's a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

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A new wave of research highlights the reach of these anxieties. When the University of Michigan's National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan's Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven't come down, putting a strain on seniors living on fixed incomes.

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Meanwhile, traditional Medicare doesn't cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund's 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can't afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it's more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it's more difficult to afford basic necessities.”

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This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn't cover. According to Genworth's latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a week's worth of services from home-health aides averaged $75,500.

Many older adults simply can't afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That's $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

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With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband's heart medications, “we wouldn't make it if my husband wasn't still working,” she told me. (James' monthly Social Security payment is $1,378. His premiums are similar to Connie's and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.)

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn't easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don't want to be considered poor or unable to pay their bills, a blow to their pride. “What we try to say is, ‘You've worked hard all your life, you've paid your taxes. You've given back to this government so there's nothing wrong with the government helping you out a bit.'”

And the unfortunate truth is there's very little, if any, help available for seniors who aren't poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

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This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don't realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We're already seeing people who've had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it's going to get even better.”

——————————
By: Judith Graham
Title: Lack of Affordability Tops Older Americans' List of Health Care Worries
Sourced From: kffhealthnews.org//article/health-care-costs-older-americans-worry-election-issues/
Published Date: Wed, 03 Jul 2024 09:00:00 +0000

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Beyond PMS: A Poorly Understood Disorder Means Periods of Despair for Some Women

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Lauren Peace, Tampa Bay Times
Wed, 03 Jul 2024 09:00:00 +0000

If you or someone you know may be experiencing a mental crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

For the most part, Cori Lint was happy.

She worked days as a software engineer and nights as a part-time cellist, filling her free hours with inline skating and gardening and long talks with friends. But a few days a month, Lint's mood would tank. Panic attacks came on suddenly. Suicidal thoughts did, too.

She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, struggled to understand her experience, a rift so extreme she felt like two different people.

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“When I felt better, it was like I was looking back at the experience of someone else, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity pierced through. Her symptoms, she realized, were cyclical. Lint recognized a pattern in something her doctors hadn't considered: her period.

For decades, a lack of investment in women's health has created gaps in medicine. The problem is so prevalent that, this year, President Joe Biden signed an executive order to advance women's health research and innovation.

Women are less likely than men to get early diagnoses for conditions from heart disease to cancer, studies have found, and they are more likely to have their medical concerns dismissed or misdiagnosed. Because disorders specifically affecting women have long been understudied, much remains unknown about causes and treatments.

That's especially true when it comes to the effects of menstruation on mental health.

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When Lint turned to the internet for answers, she learned about a debilitating condition at the intersection of mental and reproductive health.

Sounds like me, she thought.

What Is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes in the week or two before a menstrual period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Others include fatigue, joint and muscle pain, and changes to appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder are life-altering. Those afflicted, according to one estimate, can endure almost four years of disability, cumulatively, over their lives.

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Though researchers estimate that the dysphoric disorder affects around 5% of people who menstruate — about the same percentage of women with diabetes — the condition remains relatively unknown, even among health care providers.

In a 2022 survey of PMDD patients published in the Journal of Women's Health, more than a third of participants said their family doctors had little knowledge of the premenstrual disorder or how to treat it. About 40% said the same was true of their mental health therapists.

Reproductive mental health has been sidelined as a specialty, said Jaclyn Ross, a clinical psychologist who researches premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois-Chicago. Only some health care providers get training or even become aware of such disorders, Ross said.

“If you're not considering the menstrual cycle, you're at risk of misdiagnosing and missing what's actually going on,” Ross said.

That was the case for Tampa, Florida, resident Jenna Tingum, 25, who had panic attacks and suicidal thoughts as a premed student at the University of Florida. It wasn't until her college girlfriend read about PMDD online and noticed Tingum's symptoms flared in the days leading up to her period that Tingum talked with her gynecologist.

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“I don't think I would have ever put the pieces together,” Tingum said.

Suicide Risk and Treatment

Because few researchers study the condition, the cause of PMDD is something of an enigma, and treatments remain limited.

It wasn't until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though references in medical literature date to the 1960s.

Defining the disorder as a medical condition faced early pushback from some feminist groups wary of giving credibility to stereotypes about PMS and periods. But Ross said patients must be taken seriously.

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In one study, 72% of respondents with the disorder said they'd had suicidal thoughts in their lifetime. And 34% said they had attempted suicide, compared with 3% of the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It was only in the months before her death at age 33 that Christina connected her extreme distress to her cycle — no doctors had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools around the country to change curricula and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these reactions to hormones occur,” Ross said. “There's so much work to be done.”

While doctors haven't settled on a universal approach to address the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida–Jacksonville College of Medicine.

Selective serotonin reuptake inhibitors, the most common form of antidepressants, are a first line of attack, Carpenter said. Some patients take the medication regularly; others in just the week or two that symptoms occur.

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For some patients, hormonal birth control can alleviate symptoms by controlling or preventing the release of certain hormones.

Finally, talk therapy and cycle awareness can help patients build mental resilience for difficult weeks.

Sandi MacDonald, who co-founded the International Association for Premenstrual Disorders, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains elusive.

She hopes the new White House initiative on advancing women's health research will open doors.

Let's Talk About Periods

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Both Lint and Tingum, who were diagnosed by medical professionals after learning about the disorder on their own, said a lack of conversation around periods contributed to their care being delayed.

Lint doesn't remember talking much about periods in grade school; they were often the butt of a joke, used to dismiss women.

“For the longest time, I thought, ‘Well, this happens to everyone, right?'” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are like? No, absolutely not. But we're talking about a quarter or more of my life.”

Brett Buchert, a former University of Florida athlete who took time away from campus because her symptoms were so severe, said that when doctors do ask questions, it can feel like boxes being checked: “ ends there.”

Buchert, who graduated with a degree in psychology and now lives in Boulder, Colorado, said understanding what's happening to her and being aware of her cycle has helped her manage her condition.

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Lint and Tingum agreed.

Even as Lint struggles to find a medicine that brings relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments in the week before her period. She carves out more time for self-care.

She's also found solace in reading stories of others living with the condition, she said.

“It's helped me process the extremes,” Lint said. “There's not something wrong with me as an individual. I'm not crazy; this is something that's legitimately happening to me. It helps to know I'm not alone.”

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

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——————————
By: Lauren Peace, Tampa Bay Times
Title: Beyond PMS: A Poorly Understood Disorder Means Periods of Despair for Some Women
Sourced From: kffhealthnews.org/news/article/premenstrual-dysphoric-disorder-pmdd-beyond-pms/
Published Date: Wed, 03 Jul 2024 09:00:00 +0000

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