Rural Patients With Dementia Face Unique Challenges

Jun 5, 2020

Credit Flickr via Creative Commons

For this segment of our series, we’re taking you on the road to learn about the unique challenges facing our rural neighbors with dementia.

I pulled up to the senior center in Ava, Missouri, in Douglas County, and stepped inside.  Five men were playing pool. This was in early March, about a week before the new coronavirus swept through the Midwest.  

There to meet me was Treva Warrick, a regional care coordinator with Senior Age. This is one of about three dozen senior centers across southwest and south-central Missouri run by Senior Age—and in rural areas, they’re a lifeline.

“The [senior] centers all do the meals,” Warrick said. “That is pretty much right now the frozen meals.”

That free meal service has continued throughout the pandemic. Warrick also helps people with Medicare and Medicaid counseling, and she says many of people she meets have dementia.

“A lot of the people that I see are the lower income, a lot of people are looking toward Medicaid to pay for any nursing home care or even in-home care… if they do not qualify for that, then they are looking at using their assets to pay for it,” Warrick said.  “In some cases, I find some that the family is willing to step in and do a lot of caregiving, but with so many of them being working, there's usually not a as much time for that as what three used to be.”

And long-term care insurance is pretty unusual in these parts, according to Warrick.

“I do not see many in this area who have the long-term care policies,” Warrick said. “For one thing, they are they get expensive in premium.”

In the rural Ozarks, Warrick says families trying to find services for someone with dementia often have to pay out of pocket or “private pay.” According to Warrick, there are agencies and individuals who do home health care, but staffing in rural areas is often an issue.

“For instance, we just had someone that they were looking for, someone to work in the Theodosia area, which is very rural,” Warrick said. “They did not have any workers in that area, and could not provide the service.”

The shortage of staff and funding means that many people who need dementia care are slipping through the cracks.

“I see a lot of people, spouses caring for the other spouse that has dementia,” Warrick said. “They desperately need some respite care, some extra help… the funding is just not out there to do it.”

And many rural counties, like Douglas, Ozark and Howell, don’t have a senior citizen tax fund to pay for extra services that Medicaid doesn’t cover.

In addition to seeing this need in her job, Warrick says she’s navigating this journey at home too. Her mother has dementia.

“My mother was always a very independent woman… she was always the one that was the first to come and help whoever needed help always cooked a huge family meal every Sunday, it was the spot where everyone gathered on Sunday,” Warrick said. “She had a chicken casserole that was the favorite for the grandkids, so the last time I made it and cooked it, she didn't remember it at all.”

Warrick and her two siblings live near their mother. Right now, they’re sharing the responsibility of caring for her during the day and tending to the farm.

“We just recently had to take her vehicle keys because she can no longer pass the driving test, so in a rural area, that is a challenge,” Warrick said. “As far as transportation we haven't looked into that as far as hiring someone to drive her for her beauty shop appointments for groceries, and that is something that she tended to do a lot of.”

Most of Missouri’s rural senior centers do not provide transportation.  In small towns like this, there’s not even a taxi service—and poor internet reception makes Uber or Lyft rare, too. There is an OATS bus that will run routes for shopping. It goes to Springfield one day a month during normal times, usually to take seniors to their doctors’ appointments.

“I've always thought they had to be pretty tough to be able to ride that for their doctor appointment,” Warrick said. “I had one neighbor that would get on at six o'clock in the morning and she might get home at seven o'clock that night.”

And speaking of a trip to the doctor, rural dementia patients often face barriers to access a doctor, let alone a geriatrician or neurologist who specializes in dementia.

What would you most like to see for rural dementia patients? 

I asked Warrick if she could wave a magic wand and grant one thing for dementia patients in rural Missouri, what it would be?

“What I see most for them right now, families with with someone with dementia is respite care, I see a lot of need for that and I see a lot of requests for it.” Warrick Said

Respite care, as the name implies, that’s where someone, maybe from a church or an agency or conceivably a public health department, would come to the home to give the caregiver some respite, or a much-needed break.

“Even the ones who are not asking for it desperately needed someone, someone to be there so that they can go to a doctor's appointment, someone to step in and help and just give them a break,” Warrick said. “In the counties I've worked with who did have respite care, we would tell the caregiver, if nothing else, ‘take a day at the park, go for a walk, do something to take that mental break’, It's very important.”

A couple of hours’ drive to the northwest, in Polk County, I pose that same question to another expert who works with people with dementia.  Billie Baldwin has hosted a dementia support group in Bolivar for more than a decade.

“What I really would like to see in any community, but in this community, I really would like to see the opportunity for more meaningful activity, more meaningful socialization for both the caregiver and the person carrying the dementia,” Baldwin said. “Life does not stop at the moment of diagnosis, life changes dramatically, but I think whatever could be done to enhance or maintain their level of function for as long as possible, thereby improving their situation.”

A few cities do have places like that. Dementia-friendly facilities where people can go and socialize and interact on their own level, without the pressures and hustle and bustle of regular society. Here in the rural Ozarks, there is a serious need for both respite care and socialization for families facing dementia.

Some places, like St. Charles, Missouri, are stepping aboard a grassroots movement called Dementia Friendly America.

There, a volunteer team makes up a partnership between local nonprofits, a church, a bank, a restaurant and the Alzheimer’s Association. They provide dementia-friendly training to the faith and business communities and they have a Memory Café.

Before the coronavirus, Memory Cafes had sprung up in more urban areas—those are coffeeshops, libraries, museums, community spaces or restaurants that ensure people with dementia have a relaxed, respectful outing with their loved ones.  To learn how to start a memory café in your area, you can find a toolkit click on this link to this story from our website:   KSMU.org.

Senior Age of Southwest Missouri reaches 17 counties across southwest and south-central Missouri.  They provide home-delivered meals, housekeeping, and other services. Contact SeniorAge at 417-862-0762  or toll free at 1-800-497-0822 to learn more about their services.