By Madelyn Dibee
When Laura Icenogle, 51, was asked what Arkansas does well in supporting dementia caregivers, she laughed.
It was a full, loud belly laugh that took up her entire breath, the kind that would undoubtedly be contagious in almost any other setting. But the reality behind it wasn’t funny. It was the exhausted sound of a woman who spent nearly a decade watching systems fall short and being the only person left to hold the pieces together.
Her situation is a common standard for families in Arkansas. Here, when people struggle with dementia, the support systems are often too thin to matter, leaving families to wing it through a mess of financial and logistical hurdles that never seem to end, resulting in caregivers paying the price in the form of their mental health.
Right now, over 60,000 Arkansans are living with the disease, a higher share of the senior population than the national average, according to the Arkansas Alzheimer’s Association. In a state that is largely rural and already struggling with high rates of chronic health issues, the need for help is simply moving faster than the resources can keep up.
By 2015, Icenogle’s life had already begun to revolve around her father. He was a veteran living in Prairie Grove, dealing with a tricky combination of dementia, Parkinson’s and mental health challenges. As his condition progressed, it became clear he could no longer manage alone.
As an only child, the responsibility settled entirely on her. It forced a life-altering pivot that most people never have to consider. She walked away from a career on Wall Street, abandoning the high-speed, high-stakes logic of the finance world for the slow, more illogical world of memory loss.
The transition was jarring. In New York, her world was defined by logic: problems were identified, analyzed and solved with data and quick, decisive action. There was a sense of agency and a clear path to a result.
But in Prairie Grove, her world would become defined by the navigation of a system that no one could make sense of. She was faced with a father whose health was getting progressively worse, and a disease that didn’t care about a “return on investment” or a logical progression. She became a full-time caregiver overnight, learning to navigate an entirely different world.
Dementia is rarely a steady decline; it is a series of unpredictable ups and downs. While the clinical timeline for dementia progression usually spans from eight to twelve years, according to the Alzheimer’s Society, that path is rarely predictable. For many, it starts with small lapses you can almost ignore: a forgotten name, a lost set of keys or a repeated story that feels like a simple quirk of aging. But eventually, it hits a point where the smaller things create a bigger crisis, and 24-hour supervision becomes the only way to keep a loved one safe.
A guide of support available through dementia progression at the Schmieding Center for Senior Health and Education. The Schmieding Center is a space in Springdale that gives support and resources for those caring for loved ones with dementia.
For Icenogle, dealing with the Veteran’s Affairs added an additional layer of frustration to her father’s decline. He relied on the VA for his medical treatment, but Icenogle said the system’s rigid disability ratings often failed to reflect the treatment a person actually needs. Though her father was battling a multitude of medical conditions, that made caring for him more difficult, the VA placed him at a rating that limited the help Icenogle would receive with his care.
“They have the services there,” she said. “But if you don’t meet that rating, you can’t access them.”
Even with the Veterans Health Care System of the Ozarks near Fayetteville, the physical proximity didn’t bridge the divide. These ratings determine whether professional help arrives, or a family is left in isolation. She found herself fighting a system that prioritized codes over the man in front of her.
“I was pulling teeth and nails to get someone to give him a shower once a week,” she said.
For a while, the crisis remained within Arkansas. Then, in 2019, that changed.
Her mother, who was living in Franklin Township, New Jersey, with Icenogle’s stepfather, started to develop early signs of cognitive decline. Her moment of clarity regarding her mother’s state came without warning during an accidental pocket dial.
On the line, Icenogle could hear her stepfather trying to guide her mother into a wheelchair. He repeated the same instruction again and again, while her mother, who was battling Parkinson’s, struggled to follow. The confusion played out in real time over the phone: the sound of two people drowning in a room a thousand miles away.
“That was the moment,” Icenogle said. “There was no pretending anymore.”
After that, the geography of her life shifted. Roughly 1,300 miles separate Prairie Grove from Franklin Township, and Icenogle and her husband began moving between the two in response to whatever demanded their attention most at the time.
She had to coordinate care from wherever she was not. Appointments were scheduled and confirmed remotely and information didn’t always transfer cleanly between providers. She found herself repeating the same details to different nurses and clarifying instructions that had been lost between conversations. She was constantly on edge regarding her father’s care, as she was the only family he had to lean on.
That kind of sustained pressure, often referred to as shadow work, is the invisible labor of caregiving. For people like Icenogle, it can look like hours spent on hold with insurance companies, late nights preparing for what the day ahead will hold and constant, never-ending anxiety that comes with waiting for the next phone call.
According to the Alzheimer’s Association, nearly 60% of caregivers report high levels of emotional stress, with more than one-third describing that stress as severe. Over time, the strain can turn physical. The CDC found that long-term caregivers face increased risks for heart disease, weakened immune responses and chronic exhaustion, especially when support is limited.
For Icenogle, the breaking point of that system became clear during a trip to New Jersey. While she was there caring for her mother, the VA called and told her that she needed to pick her father up from the emergency room back in Arkansas.
“I kept telling them I’m not there,” she said. “There is nobody else.”
After endless back and forth, the hospital eventually found him a ride, but they made it very clear that it was a temporary solution to Icenogle’s predicament. Her dad needed someone there permanently.
Finding additional help for her dad was draining. She struggled to get access to transportation services, pain medication, palliative care and any form of in-home help.
Managing one parent was consuming but managing two, separated by half the country, was unsustainable. As both parents declined, Icenogle eventually brought her mother and stepfather to Arkansas. She consolidated their care into one place, not because it was easier, but because it was the only way to keep doing it at all.
What she was navigating is part of a massive, growing national problem. More than seven million Americans aged 65 and older are living with Alzheimer’s, the most common form of dementia, and this number is projected to nearly double by 2050, according to the Alzheimer’s Association. The number of caregivers to address this problem, however, is not growing anywhere near the same pace.
But in Arkansas, the systems meant to support that growth are visibly strained, specifically in the workforce. According to Indeed, home health aides in the state earn about $14.09 per hour on average, which is 20% below the national average. It is work that is physically demanding and emotionally heavy, and without better compensation, fewer workers are staying in those roles.
In Northwest Arkansas, these shortages are already creating bottlenecks. At the Schmieding Center for Senior Health and Education, a program in Springdale that provides training and support to dementia caregivers, social worker Lauren Gale said that families can sometimes wait up to six months just for a dementia evaluation through the Washington Regional Senior Health Clinic.
Those delays are tied to a shortage of physicians trained in geriatrics, a field that has not kept pace with the aging population. Because Medicare and Medicaid reimbursement rates for geriatric care tend to be lower than other specialties, it is less financially attractive for new doctors.
Those delays narrow the window for early intervention, leaving caregivers to interpret symptoms and make life-altering decisions on their own without a clear roadmap.
The financial cost makes resources unattainable for many as well. After Icenogle’s mother was diagnosed, the family hired a live-in aide, but within a year, the cost approached $100,000.
“It just disappears,” Icenogle said. “You don’t realize how fast until it’s gone.”
For many, this represents a cruel reality of handling Medicaid, where families must drain every cent of a lifetime’s worth of savings, just to qualify for state help. It is a system that punishes those who save and leaves them with nothing to pass on. Medicare does not cover long-term in-home care, leaving gaps that are filled either by life savings or unpaid labor.
According to AARP, in Arkansas, labor is provided by roughly 178,000 family members who have become a makeshift workforce. They pour an estimated 257 million hours into unpaid care every year. If that labor were paid, the bill would rack up to $4.6 billion annually.
New federal efforts like the GUIDE Model are supposed to bridge these gaps, but for most families, that support is still a future possibility. This leaves local support centers, like the Schmieding Center, to pick up the slack. Schmieding Center social worker Jay Vogler runs what he has called a Memory Café. It is a space with activities and socialization, giving both the patient and the caregiver a rare chance to just feel normal for an hour.
The center also hosts essentrics sessions: gentle full-body workouts that are meant to improve both physical and mental well-being. That specific rhythm helps cut through the confusion for the participants while giving caregivers a few hours of much-needed breathing room: the time to go to the grocery store without checking a clock every thirty seconds, the time to get a haircut or simply the time to sit in a parked car in total silence and relaxation.
Even with those wins, the gaping holes in support are hard to ignore. In NWA, the most apparent issue, according to Gale, is the lack of reliable daytime care. While caregivers in larger cities can often rely on adult day centers that are covered by Medicaid, the last adult day center in the region closed during the COVID-19 pandemic.
Outside of the Schmieding Center, options are slim. There are additional respite services in the area, but locations are limited and not plentiful.
Even within the Schmieding Center, capacity is at a breaking point. Adherence to certain guidelines gives them a limit to how many people are allowed within the space at a time. That limit is often far lower than the need.
“I send out a weekly registration to 25 participants, and it’s full within the first 20 minutes,” Gale said. “Jay and I see caregivers just plummet themselves because they’re trying so hard.”
This labor triggers a secondary crisis: a mental health emergency among the caregivers themselves. According to the Arkansas Alzheimer’s Association, 30% of caregivers have reported being diagnosed with depression.
Without consistent access to professional respite, caregivers often experience prolonged trauma, watching a loved one’s personality vanish while their own social connections and mental stability erode. In Arkansas, where professional help is scarce in comparison to the need, this burnout often leads to higher rates of mental health struggles among unpaid family members who feel they have no off switch.
This is a large reason why many support groups have been created for family caregivers for loved ones with dementia in NWA.
At Clear Creek Memory Care in Fayetteville, peer support takes place on the first Monday of each month in a side room right by the entrance.
In March of 2026, Eleanor Dalmut, 76, arrived early to the Monday meeting. She is a petite woman with peppery hair pulled to the nape of her neck, but her presence fills the room. She spent seven years caring for her husband, Frank, before he passed away in January 2025. She continues to return to the meetings to serve as a source of support for those going through what she once went through herself.
“When my husband passed away… I continued to come because I felt like I had something to offer for the people coming up behind me,” she said.
The room is small, and the circle of chairs is misshapen to make room for everyone who needs to be there. There are two tables taking up space in the room: one is filled with hot pizza for attendees to snack on during the meeting, and the other has a vase with two bright green hydrangeas, bringing lightness to a meeting focused on such serious matters. The air is thick with love, heartache and compassion, only other caregivers understand.
The conversation flows easily between practical questions, like how to get a loved one to become more involved, and more difficult ones, like the unspoken reality of end-of-life decisions. There is no judgment here, only a collective understanding of what it means to love someone who is slowly disappearing in front of your eyes.
Dalmut remains a steady presence in the center of it all. With kind eyes and a quiet, reassuring presence, she becomes someone others turn toward for guidance. It is a kind of support that is difficult to replace.
It was something Icenogle did not have access to consistently throughout her time caring for her parents.
Her caregiving journey ended in 2024. Both of her parents died within months of each other, and she was there for both, holding each of them in her arms as they passed on.
But for the caregiver, the crisis doesn’t necessarily end at the funeral. After a decade of hyper-vigilance and of making someone else’s health the center of your life, the silence that follows can be deafening.
What she experienced is becoming the new reality for Arkansas. The state is aging, the number of residents with dementia is rising and the systems meant to support them are falling behind. While many of these systems are creating issues at a national level, specific state support is lacking as well.
Arkansas is struggling to provide plentiful and affordable respite programs, consistent support systems and fairly paid caregivers. Unless the state’s support systems expand, more families will be left to like Icenogle once was: giving everything up to support their loved ones through their decline until there is little left of themselves to give.