When Bobby and Sandy Marshall moved from Florida to southeast Missouri three years ago, they landed in what Bobby called a “medical desert” with fewer resources. Access to care was critical as Bobby lives with early onset and atypical dementia.
The couple continued to travel to Bobby Marshall’s medical appointments in Florida every three months. With long hospital waitlists, it took more than a year for him to see a specialist in St. Louis. The Marshalls now drive nearly three hours from their home in Poplar Bluff, which has a population of about 16,000, to see his doctors at Washington University.
Bobby Marshall, who was diagnosed at age 55, is among the millions of Americans living with dementia, the most common form of which is Alzheimer’s disease. Across Iowa, Kansas, Missouri and Nebraska, more than 270,000 people ages 65 and older live with the disease; Bobby Marshall and others who are younger are not counted in that figure. The number of people with dementia, as well as their unpaid caregivers — nearly half a million across those four states — is expected to climb in the coming decades as the U.S. population ages.
Missouri, the most populous of the four states, saw 2,690 deaths from Alzheimer’s in 2024 — a 145% increase since 2000. It meant Missouri had the ninth-highest Alzheimer’s death rate in the U.S., according to the Alzheimer’s Association.
To meet the growing demand for care, the association estimates that each of those Midwest states will need to see a 77% to 137% increase in geriatricians in the next 25 years.
Since moving to be closer to their grandchildren in Missouri, the Marshalls have advocated for more support for people with dementia and their caregivers — services that advocates say improve early detection and intervention, and give families more time with their loved ones.
“There is absolutely nothing in the rural areas of this state to help people with dementia,” Bobby Marshall told Missouri lawmakers this year.
Among the initiatives the Marshalls have advocated for in Missouri is a statewide dementia services coordinator, a position that exists in Washington, D.C., and 32 states, including Kansas, Nebraska, Illinois and Minnesota. Iowa does not have a designated statewide coordinator, though some have advocated for a more localized approach there.
Establishing a full-time position in the Department of Health and Senior Services is part of a wide-ranging healthcare bill on Missouri Gov. Mike Kehoe’s desk. The coordinator would lead Missouri’s strategy, work across agencies and connect families to services, especially in rural areas, becoming “a lifeline to the longevity” of people with dementia, as one legislator put it.
David Olsen, the Alzheimer’s Association’s Midwest and Central Plains government relations director, called government buy-in critical and said each state is making progress in its own way.
Nebraska last year, for example, passed insurance coverage for biomarker testing, which allows for earlier, more accurate diagnoses. The year before, Nebraska passed a measure that included tax credits to cover some costs of caring for family members with dementia.
Last year, Illinois became the first state to require state-regulated health insurance plans to cover treatments that slow the progression of Alzheimer’s and related dementias. Similar legislation has been proposed in Nebraska.
“This work is not a partisan issue — it’s not a red or blue issue,” Olsen said. “This is a disease that impacts everyone.”
Fighting the fight
Sandy and Bobby Marshall decided to get cognitive assessments more than 10 years ago after the death of her father, who had Lewy body dementia. The disease became better known after the 2014 suicide of actor-comedian Robin Williams, whose autopsy revealed he had it.
Bobby Marshall got his diagnosis within three months of his father-in-law’s death. He embodies the importance of early detection: Doctors told his wife he had just five to eight years to live. That was more than 11 years ago.
The Marshalls, who are former Navy corpsmen and retired teachers, decided to “fight the fight.” Bobby Marshall changed his diet and started medications. He had their two grandkids write out their nicknames, which he had tattooed on his wrists so he’d never forget them.
In February, the couple traveled to Jefferson City to testify in support of a bill that would establish a dementia coordinator.
Rep. Travis Wilson, a Republican from St. Charles who introduced the bill, said his personal connection to the disease was having worked for former St. Charles mayor and Missouri state representative Sally Faith, who was diagnosed after retiring.
One in five Missourians with dementia are readmitted to a hospital, so a coordinator helping with early diagnosis could lower the overall cost of treatment, Wilson told his colleagues. In 2025, Medicaid costs of caring for Missourians with Alzheimer’s totaled $1.29 billion, a figure expected to significantly rise in the coming decades.
“The need for this is beyond anything most people really understand,” said Rep. LaKeySha Bosley, a Democrat from St. Louis, who was one of several lawmakers who have family members with dementia.
When it was the Marshalls’ turn to speak, Bobby Marshall expressed concern for rural Missourians, like a farmer in Dunklin County — in Missouri’s Bootheel — who notices his wife has become forgetful.
“There’s got to be some place for them to go,” he said.
Sandy Marshall told lawmakers the state’s services were scattered across various agencies like “pieces of a puzzle that don’t quite fit together.”
“We have the resources but lack the connective tissue,” she said.
Sandy Marshall joked she’d do the coordinator job herself for a “third of the price,” prompting laughter.
During an interview, Sandy Marshall said she would actually take the role if she could mostly work from home, which the couple renovated to have wider doors and an easily accessible bathroom, preparing for Bobby Marshall’s condition to progress. In southeast Missouri, she is already connecting caregivers to resources: A neighbor reached out, asking what to do, shortly after a friend’s wife’s diagnosis. Several nursing homes have called her seeking help.
On a recent Tuesday afternoon, a handful of people met during a monthly dementia support group at a Poplar Bluff thrift store whose sales fund a center for survivors of sexual assault and domestic violence. Among them was the caregiver of a woman who had recently moved to Florida; Sandy Marshall offered to get him in touch with resources there, jotting down her phone number and urging him to call her.
“You’ve come to the right place because this woman knows everyone,” Sue Crawford, whose late mother had dementia, told the man.
Kansas makes strides
In 2023, Kansas created a coordinator position, which Olsen, of the Alzheimer’s Association, said has been a success. The state has established a respite program to provide funding to caregivers and plans to expand training for professionals who work with people with dementia.
Kansas, where more than 55,000 people ages 65 and older live with Alzheimer’s, has made other notable strides in recent years to expand support.
The state this year identified $5 million for the University of Kansas Medical Center to build a network that KU said will bring “specialist-level dementia diagnostic capabilities” to primary care practices across the state, especially in rural communities.
Olsen said the Legislature’s investment puts Kansas in the top five states across the U.S. for state-supported Alzheimer’s research, which he called “huge.”
“That’s not per capita; that’s just in raw dollars,” Olsen said.
Jeffrey Burns, co-director of KU Alzheimer’s Disease Research Center, has noted the 196 neurologists in Kansas are largely grouped in metro areas like Kansas City and Wichita.
“The tools to detect, slow and ultimately prevent Alzheimer’s disease are arriving faster than the care systems capable of delivering them,” Burns said when the funding was announced in April. “This investment builds the infrastructure Kansas needs to keep pace — not just for what exists today, but for the wave of innovation we know is coming.”
Hopes for a 'brain bus'
For the Marshalls, their ultimate goal is for a bus to provide mobile screening tests and other services across Missouri’s medical deserts — in rural and urban areas.
They advocated in Tallahassee for funding of two brain buses that now travel throughout Florida, which has an older population. The couple has floated the idea to Missouri lawmakers, saying it would be similar to a mobile blood donation or mammography unit.
In Iowa, Broadlawns Medical Center in Des Moines this year launched the state’s first mobile unit that provides dementia services.
Bobby Marshall does not consider his dementia a “death sentence.” He has good days and bad ones. Thanks to early detection, he continued to work for several years after his diagnosis, though retiring early and leaving his high school students was devastating. He still travels to the grocery store by himself and plays golf with friends.
“The earlier you get diagnosed, the better you are,” Bobby Marshall said. “I’m proof of that.”
The Midwest Newsroom is an investigative and enterprise journalism collaboration that includes Iowa Public Radio, KCUR, Nebraska Public Media, St. Louis Public Radio and NPR. There are many ways you can contact us with story ideas and leads, and you can find that information here. The Midwest Newsroom is a partner of The Trust Project. We invite you to review our ethics and practices here.
METHODOLOGY
Reporter Luke Nozicka interviewed advocates to better understand how Midwest states are preparing for the growing number of people living with dementia. He also traveled to Poplar Bluff, Missouri, to attend a support group and interview a family living with the disease. He reviewed national and state data about dementia rates.
REFERENCES
Iowa Alzheimer’s Disease Facts and Figures (Alzheimer’s Impact Movement | 2026)
Kansas Alzheimer’s Disease Facts and Figures (Alzheimer’s Impact Movement | 2026)
Missouri Alzheimer’s Disease Facts and Figures (Alzheimer’s Impact Movement | 2026)
Nebraska Alzheimer’s Disease Facts and Figures (Alzheimer’s Impact Movement | 2026)
KU Medical Center to receive $5 million from state legislature to build Kansas Brain Health Assessment Network (KU Medical Center | April 2026)
Dementia Comes in Many Forms. Alzheimer’s Is Just One. (The New York Times | 2025)
TYPE OF ARTICLE
News — Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources
