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More than 7 million Americans who are 65 or older live with dementia. Another 13 million people provide unpaid care for those folks, their loved ones or friends with a diagnosis. Those numbers are expected to climb as the U.S. population ages, and advocates say government support will be critical for early detection and resources for caregivers. Luke Nozicka with the Midwest Newsroom reports.
LUKE NOZICKA, BYLINE: Dementia is an umbrella term for a decline in cognitive abilities severe enough to interfere with daily life. Its most common form is Alzheimer's disease. Bobby Marshall embodies the importance of early detection and intervention. When he was diagnosed, doctors said he had just five to eight years to live. However, he's lived longer.
BOBBY MARSHALL: Eleven years in, and I'm doing pretty good.
NOZICKA: Bobby and his wife, Sandy, decided to get a baseline cognitive assessment after her father died of Lewy body dementia in 2014. It's a kind of dementia that became better known after the death of actor and comedian Robin Williams. Both Marshalls previously worked in the medical field and thought they might as well get screened. She was 50. He was 55.
SARAH MARSHALL: That way, in 10 years, we'll do another test and see where we are. And for the first time in our married life, I did better on a test than...
B MARSHALL: (Laughter).
S MARSHALL: ...Bobby did.
B MARSHALL: Yeah.
S MARSHALL: Bobby's very smart. And I passed it, and he didn't.
NOZICKA: The couple, who lived in Florida at the time, learned Bobby had early-onset and atypical dementia. They went home that day and launched into research, determined to get ahead of the disease. Bobby made a plan with a neurologist and a nutritionist.
B MARSHALL: We were seeing what was going on around the world in different countries and how they treated it and decided that we were going to attack it head-on. And get out in front of it and do the best that we can.
S MARSHALL: I would love for you to be the first survivor.
NOZICKA: Sandy and Bobby now live in Poplar Bluff, a city of about 16,000 people in the Ozark Foothills in southeast Missouri. Bobby described it as a medical desert with few resources. At first, the couple continued to travel to Bobby's medical appointments in Florida. Eventually, they got off a more-than-yearlong waitlist to see a specialist in St. Louis. Now the Marshalls drive nearly three hours from their home to see Bobby's doctors at Washington University in St. Louis.
David Olsen is the Alzheimer's Association's Midwest and Central Plains government relations director. He calls government buy-in critical to supporting people with dementia and says each state is making progress in its own way. For example, Nebraska passed insurance coverage last year for biomarker testing to help with early detection.
DAVID OLSEN: This is a disease that impacts everyone. Whether you're Republican, Democrat, Black, white, Hispanic, this is impacting somebody in your community.
NOZICKA: Advocates have pushed for years for states to create dementia service coordinators in order to connect families with resources, especially in rural areas. Coordinator positions exist now in Washington, D.C., and 33 states, including Illinois, Kansas, Nebraska and Missouri, whose governor recently signed a healthcare bill that created the full-time position.
OLSEN: Having an individual that can cross agency lines can make those connections and really provide a coordinated state strategy to respond and best provide services for people living with disease in all stages, as well as their caregivers.
NOZICKA: Supporters say statewide coordinators also help with early detection, which has been critical for people like Bobby Marshall. More than a decade after his diagnosis, Bobby still golfs with friends.
For NPR News, I'm Luke Nozicka in St. Louis.
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