Terri Lipe said she was “blessed” at the beginning of her caregiving journey as her mom went into her Alzheimer’s diagnosis knowing what to expect.
“My stepdad had Alzheimer's, so mom was with him, obviously, every single day,” Lipe said. “So she knew what was coming — literally.”
She said her mom went so far as writing her a letter in the early days after her diagnosis — reassuring Terri and helping her make decisions going forward.
“Growing up, we were peas in a pod. We're still very close, but it's just different,” Lipe said. “Now she's the kid and I'm the mom.”
For years, Lipe kept her mom at home. She started a take-and-bake business from her home so she could provide the round-the-clock care that her mom needed, and it helped cover the growing financial burden.
She said being a caregiver was hard, but one of the things that helped was attending — and eventually co-facilitating — the Caregiver Helping Caregivers support group in Bolivar alongside one of her best friends, Billie Baldwin.
“We're in contact almost daily,” Lipe said.
“Caregivers are doing the work of an entire care team, often by themselves.”Jasmine Santoyo-Olsson, University of California-San Francisco
“It doesn't have to be full length conversations,” Baldwin added. “Sometimes it's just an eye roll emoji. Sometimes it's a mad emoji. Sometimes it's ‘Bring me a coffee.’”
Baldwin is also a family caregiver — for her husband who has vascular dementia. She still works outside of the home and has been facilitating the group for more than a decade.
She said folks come once a month to Brenda’s Cafe to share and vent with people who understand the sometimes overwhelming reality of caretaking for a loved one with dementia. There are still laughs, but often, people share their frustrations with the lack of resources in the area.
Jasmine Santoyo-Olsson, an assistant professor of geriatrics at the University of California-San Francisco, studies family caregivers living in rural areas.
She said many factors influence rural caregiving, such as lack of transportation, difficulty getting a formal dementia diagnosis from the few available specialists and a lack of nursing homes beds.
But Santoyo-Olsson said there’s also some obstacles that might not be as obvious, such as needing to balance caring for a farm and a loved one, a lack of in-home help to hire, social isolation and few respite care options — essentially, any program that allows family caregivers to get a break while also knowing their loved one is safe.
“Regardless of whether you're in an urban area or a rural area … caregivers are often on call 24/7, and not only managing like hands-on care, but also having to deal with medical decisions, finances, logistics,” Santoyo-Olsson said. “Caregivers are doing the work of an entire care team, often by themselves.”
Santoyo-Olsson said finances can also be a challenge because of the need for higher levels of care. This could include hiring in-home helpers, purchasing additional locks for the home or even the costs of GPS trackers that can help find wayward dementia patients.
Additionally, many caregivers — rural or otherwise — don’t fully understand which government assistance programs pay for what kinds of care. For example, Medicare does not pay for long-term nursing home care. It only covers short-term, skilled nursing.
And Medicaid varies state to state. Some states cover more, but as a general rule, people must be lower income to qualify for the program.
She said she’s found in her research that not everything is negative about the rural caregiving experience — sometimes, neighbors or other family members can help share the work and a smaller environment can allow a person with dementia to stay independent and drive longer.
But eventually, the disease enters the later stages.
“Neighbors and that social support that once existed… doesn't progress as the dementia progresses,” Santoyo-Olsson said. “And so, people are then isolated because people don't come around anymore. Then the caregiver’s just left on their own.”
Some support exists, but the future of state funding is uncertain
According to the Alzheimer's Association, there were 122,000 people aged 65+ living with Alzheimer’s in Missouri and 226,000 family caregivers providing them unpaid care in 2025.
The Missouri Caregiver Program is one group working to support those caregivers. It receives funding from the state that is then distributed to people throughout Missouri.
During the last three years, the program has provided services in 80% of Missouri counties.
Program Coordinator Erin Piperno said their program is not income dependent and is split into three areas — in-home assessments and education, respite reimbursements and assistive technology grants.
“Our goal here is to be supportive and to provide connection and to truly understand what someone's going through, and meet them where they are,” Piperno said. “Some days, that's help and some days, that's just conversation.”
She said the respite program reimburses caregivers up to $1,500. It can be applied toward in-home care costs, short term stays at nursing facilities and adult day care costs.
“The unique thing about the Missouri Caregiver Program, especially in these rural communities where there's not a lot of access, is that care can be provided by a family member, friend, someone that the caregiver is really close to or comfortable with, as well as the person living with dementia.”
"There are resources out there. Don't get me wrong. I don't mean to be disparaging, but as a caregiver, you don't have time to look for resources. You don't have time to be on the phone."Billie Baldwin, Caregivers Helping Caregivers co-facilitator
Caregivers can also apply to receive assistive technology grants, which are at most $1,000, that can help cover the costs of GPS trackers, in-home cameras or senior phones and tablets.
The program is currently helping 821 families in the state, and there’s more than 110 families on the wait list.
In the current fiscal year, which ends in June, the program received $2.2 million dollars from the state to provide this supplemental assistance. But that funding is at risk. In the proposed state budget for fiscal year 2027, $1 million — nearly half of their current funding — would be eliminated.
Piperno said that would mean 250 fewer families get help. And it could lead to much larger Medicaid costs for the state if those with dementia have to be institutionalized instead of receiving unpaid familial care at home.
“But the trickle down and the human effect of a budget cut is way deeper … we're about providing hope, and if that hope is gone, then what do you have?” Piperno said. “I mean, we're talking about $1,500 to $2,000 for a family. It's taking away hope. It's forcing institutionalization into a system that doesn't have the capacity already, and that's where people end up in serious mental health crises.”
Back in Bolivar, Terri Lipe and Billie Baldwin are providing what everyone agrees is one of the most pressing needs for rural caregivers — human connection and an understanding of their unique frustrations and grief.
They said some of their meetings are focused on the planning and logistics of dementia care, such as guardianships and advanced care planning. But other meetings are just about finding community and healing.
“They rely on us. We rely on each other,” Baldwin said. “But really, people just want to be heard … They want to know that they still matter, too, and that their journey matters.”
“And that they are not alone," Lipe added.
In the future, Baldwin hopes to open an adult day care for dementia patients in the area. She just finalized her 5-year plan.
But for now, many in this group of rural caregivers will show up at Brenda’s Cafe next month for their dose of camaraderie and support.
