The Northern Virginia Dementia Care Consortium will host its annual conference on Saturday - bringing together caregivers, medical experts, and community organizations to address the growing needs of dementia caregivers.

The conference in Fairfax titled "Navigating the Journey: Adjusting the Sails in Dementia Caregiving" is billed as the region's largest event of its kind.

Dr. Nicole T. Rochester is keynote speaker and founder of Your GPS Doc.

She said she knows the challenges of caregiving firsthand, and reflects on her experience caring for her father - alongside her two sisters - during the last three years of his life as he battled vascular dementia.

"It literally, to this date, is the hardest thing that I've ever done, and I've done a lot of difficult things in my life," said Rochester. "But it was also a very beautiful and meaningful and transformational experience for me."

Rochester said she hopes her talk will offer "hope and inspiration" to other caregivers. Anyone interested can register for the conference on the Northern Virginia Care Consortium website.

The event will also feature Dr. Jennifer Pauldurai, a cognitive behavioral neurologist at Inova Parkinson's and Movement Disorders Center, who will address common misconceptions about dementia.

"There is no one algorithm, no one picture of dementia," said Pauldurai, "one person who gets dementia is going to look completely different one hour, one minute, one year, than they did the year before."

Her presentation will offer practical strategies for managing the complexities of dementia care. Both presenters emphasize the importance of caregivers taking care of themselves.

Attendees will also hear from financial and legal planning experts, hospice care providers and nutrition experts.

Amber Nightingale, associate state director for community outreach with AARP Virginia - whose organization is a long-time conference supporter - said every attendee will receive a copy of The 36-Hour Day, a comprehensive guide to dementia care.

"If we can help support the family caregivers who are looking for up-to-date information and resources, and information on treatment, support services," said Nightingale, "then we're happy to support such a conference."

According to the Virginia Department of Health, 150,000 people aged 65 and older are living with Alzheimer's in the state, and around 10% of people aged 45 and older have subjective cognitive decline.

Today is Rare Disease Day, an annual observance to raise awareness about uncommon and often misdiagnosed medical disorders.

Support for families and loved ones of individuals with rare diseases is often limited simply because of their lack of familiarity. One such hereditary condition, known as Hereditary Hemorrhagic Telangiectasia or HHT, affects more than 600 Hoosiers, according to the Indiana Hemophilia and Thrombosis Center.

HHT can cause spontaneous and chronic nosebleeds, and only 20% are estimated to know they have it. Early detection is important, said Dr. Magdalena Lewandowska, a hematologist at the center.

"We confirm this with genetic testing," she said. "So, about 90% of patients who have HHT have a gene mutation. There's a 50% chance of inheriting it if one of your parents is affected with HHT."

She said common symptoms can include malformed blood vessels in the brain, lungs and liver, or pin-sized reddish-purple spots on a person's skin.

An additional barrier for patients with rare diseases is locating a specialist to treat them. The Undiagnosed Diseases Network Foundation defines an "ultra-rare" disease as one that affects one in 50,000 people.

Doctors face challenges in diagnosing HHT and other unique illnesses because a specific disease may not be verifiable, due to very little research about it in medical journals. Patients can be frustrated when the necessary tests are unavailable, or the disease mimics another disorder, leading to misdiagnosis.

In 2022, registered nurse Abby Terzini had symptoms of HHT. She said she was in denial - although three family members had the disease.

"I just started having more nosebleeds," Terzini said. "'It's just allergies' - or, 'It's just this, that or the other, it's not a big deal. I'm not having any big issues with this, so I don't need to go to the doctor.'"

Terzini said she eventually decided to get help from doctors who prescribe "bleed kits" containing medication to prevent or lessen the severity of a nosebleed. In 2024, it was reported that a drug used to treat bone marrow cancer and Kaposi sarcoma - a cancer that affects the blood vessels and lymphatic system - is showing promising results for HHT as well.

Legislation to create paid family and medical leave in Pennsylvania is getting bipartisan support.

House Bill 200 has 58 cosponsors, including three Republicans. It's in the Labor and Industry Committee.

The nonprofit Maternity Care Coalition is among those pushing for passage.

Sara Jann Heinze, the coalition's senior director of policy and advocacy, said the bill would allow families some financial support during childbirth and major illnesses. She added that for new parents and babies, paid leave could cut hospital readmissions in half.

"But the bill covers family and medical leave, so it's a really great and expansive benefit," she said. "So individuals who have a baby, adopt a baby, who are sick themselves or need to care for a loved one, people experiencing domestic violence. It's a really comprehensive program."

House Bill 200 is an update of past legislative attempts known as the Family Care Act, to fund paid leave through employer and employee contributions. Thirteen states have similar programs.

Heinze noted many new mothers return to work even before their six-week checkup because of financial strain, some within ten days.

Heinze said paid family and medical leave has been found to significantly reduce perinatal depression, the most common pregnancy-related complication. Untreated, it can have long-term health effects on both parent and child.

"One in eight folks who are pregnant will experience perinatal depression," she said. "Access to paid leave can reduce the likelihood that you will experience perinatal depression by almost 28%. And this is really critical, too, because perinatal depression is challenging for the individual who has it."

Heinze said some Pennsylvania employers offer paid leave programs, but access is unequal.

"What we see is a concentration of women of color working for organizations or companies that don't offer paid family leave," she said. "So, it's upside down. The people who are most likely to experience adverse birth outcomes are least likely to have access to this program."

While large corporations use paid leave to attract talent, Heinze said, small businesses struggle to offer it, which puts them at a disadvantage in hiring.

Children's Dental Health Month is wrapping up but tips for parents and guardians could help their child's health beyond their teeth.

Oral health is a keystone of overall health for people in all kinds of ways.

Dr. Jessica Lee, professor of pediatric dentistry at the University of North Carolina, said there's no separation between dental health and children's success in other areas.

"If they have a toothache or if they're uncomfortable, they don't do as well in school, they can't concentrate, they miss school days," Lee outlined. "The smaller kids, the very young kids, they can often fail to thrive. So it's really a critical part to have good dental health for a child's overall health."

Lee noted brushing is, of course, crucial for children's dental health. She recommended kids brush their teeth for two minutes, which can be a challenge. Lee suggested adults play a song to encourage kids to brush and watch closely to ensure their children are brushing correctly.

Lee emphasized it is important to watch kids' diets, adding parents can be models for good behavior.

"We have access to so much processed foods, so many refined carbohydrates, so many sugars in our diets," Lee pointed out. "Some of it's so hidden. So for parents and caregivers, just be mindful of what their child is eating."

Lee underscored some adults might be surprised to learn baby teeth can get cavities. She acknowledged treating cavities in young children is difficult.

"If you could imagine a two-year-old getting a cavity and us trying to fix it," Lee said. "It's quite a challenge because they're just too young to sit in the chair and be able to get some really heavy dental treatment done."

Lee stressed fluoridated water is safe and protective for children's dental health. She encouraged parents and guardians to speak to their dentist or pediatrician if they have questions about fluoridated water systems.


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