John Ludwig knew he needed support as he cared for his wife, Sue, who was diagnosed with Alzheimer's in September 2019. Ludwig wrote in a testimonial that as his wife's condition worsened, she needed around-the-clock in-home care.
He also realized he needed a shoulder to lean on as he carried the weight of daily doubts and emotions that can accompany day-to-day caring for people who live with dementia and Alzheimer's.
Caregivers of dementia patients often delay or ignore their own mental health needs as they strive to help their loved ones.
Ludwig described how he wrestled with feelings of guilt and inadequacy as he tried to maintain his wife's quality of life. In the realm of dementia care services, he needed assistance from a professional who could coach him through his daily caregiving activities, sometimes called a navigator.
More Americans report burnout — physical and mental exhaustion — as they care for family members living with dementia and other debilitating health issues, often at the expense of their own mental wellbeing.
"The most common situation is where a spouse is caring for someone while they have their own mental health needs," said Daniela Bularzik, a dementia care navigator with Memory Care Home Solutions.
The St. Louis-based nonprofit was founded in 2002 in response to one family's need for more centralized dementia care services and caregiver support. Betty Baron, wife of civil rights activist Charles Baron, was diagnosed with Alzheimer's in 1996.
Lisa Baron, Betty's daughter-in-law, felt lost as she initially began researching care options. She asked experts at the Alzheimer's Disease Research Center at Washington University in St. Louis if programs for caregivers who wanted to keep their loved ones at home needed to be created.
The resounding answer was yes, and 22 years later the nonprofit she started has grown into an entity with 18 staff members assisting hundreds of families across Missouri.
A unique solution?
Nationally, more than 11 million Americans provided uncompensated care for people with Alzheimer's and other types of dementia, according to the Alzheimer's Association's 2024 report. Caregivers of dementia patients spent about 18 billion hours assisting their loved ones that year, labor the association valued at about $340 billion.
The concept of utilizing navigators to assist patients living with dementia is becoming more common across the country as it is embraced in efforts being advanced by the Alzheimer's Association and the Center for Medicare and Medicaid Services.
"We were definitely forward thinking in the creation of Memory Care Home Solutions," said Melissa Smith, the agency's program manager. "There are other organizations that do parallel things to us, but not to our level through our evidence-based programs."
The staff are passionate about their work, and that intensity is evident when they discuss the nonprofit's mission and the role of its dementia navigators, often referring to Alzheimer's as "an everyone issue." Jill Cigliana, the organization's executive director, said most of her staff have both professional and personal experience with caring for people with dementia.
"They've had a family member who had dementia, and so it feels really personal," Cigliana said.
Roughly 12,000 people across eastern Missouri receive support from Memory Care Home Solutions. In Missouri, more than 120,000 people currently live with dementia, according to the Alzheimer's Association Greater Missouri Chapter. More than 319,000 people in the state are providing unpaid care to those individuals.
Cigliana said the need for dementia care and caregiver support is growing across the St. Louis region. The need is evident among the agency's board members.
"About 70 percent of our board members have used our services, and I think that's unique," she said. "That keeps everyone super centered on our mission and feeling a really profound responsibility to pay it forward."
About 400 families, comprising more than 1,400 patients and caregivers, across the greater St. Louis area receive the organization's services. Navigators spend their time with clients, either on the phone or in person, assisting them with care plans and coaching them through any issues. On average, the navigators are on the phone for about 800 hours each year, advising families and following up with any care needs.
Bularzik and her fellow navigator, Mackenzie Jones, each have a caseload of 50 clients. Most of their time is spent talking to caregivers and patients from the office in the Central West End neighborhood of St. Louis, creating and maintaining individualized care approaches for each family. They also host community outreach events to provide more information about dementia care and caregiver support, in addition to operating an on-call service for families needing more immediate help.
"Our goal is to really increase the patient's quality time at home in a safe way," Bularzik said. "We have all these tips and tricks that we've learned directly from caregivers over the years so we can share them with others, while keeping safety and quality of life in mind."
Jones said part of their approach includes evaluating a person's home through occupational therapy visits, with the intent of making living environments clutter-free. Navigators will suggest simple and inexpensive modifications to help patients with dementia live more comfortably.
One of those inexpensive alterations involves applying a few strips of black electrical tape in the bathroom. Dementia patients lose depth perception as the disease progresses, which can create a fear of stepping into vague-looking spaces. Large white surfaces such as showers and tubs can be disorienting and make them spatially uncomfortable to the point where they will avoid bathing altogether.
To make a bathroom easier to navigate, Bularzik said wrapping black tape around any grab handles and placing strips of tape along the bottom of the bathtub allows a dementia patient to step into a space they can see is safe and helps create a calmer living environment for them.
"In spaces that are so monochromatic, something as easy as tape provides a little more structure and gives a sense of safety for folks with ailing vision," Bularzik said. "Reducing choices and making life easier for dementia patients allows them to be themselves more."
For visitors, the interior of the Memory Care Home Solutions office building is a study in calming surroundings. Various rooms are designed to mimic different home setups, including bedrooms and a kitchen. Some of the walls in those rooms are covered with bookshelf-look wallpaper to help relieve anxiety among dementia patients. Candace Schwartzkopf, former assistant director of development for Memory Care Home Solutions, said it's all intended to be used as examples for families who want to make their loved ones' lives easier. (After being interviewed for this story, Schwartzkopf left her role at the nonprofit earlier this year.)
"No perfect way"
The hardest thing to understand about Alzheimer's disease, Schwartzkopf said, was that patients "are not themselves all of the time." The disease is caused by damaged nerve cells in the parts of the brain that control memory, thought and speech.
Scientists believe the brain begins to change due to dementia 20 years or more before any symptoms are present. When the symptoms become severe enough to impair a person's daily functioning, they are said to have Alzheimer's dementia.
For Melissa Smith, her experience with dementia care began in high school when her grandfather developed Alzheimer's, and she helped her grandmother care for him. Later in her life, she would help care for her mother-in-law who suffered from vascular dementia as the result of multiple strokes.
"I actually reached out to Memory Care Home Solutions many years ago to get some resources," Smith said. "We were that sandwich generation of caring for little ones while also caring for my mother-in-law."
Jones said families usually get referred through their doctor or via word-of-mouth. Smith said they have a waitlist of families who want to utilize the agency's services. Families who sign up for the waitlist receive a mailed guidebook featuring tips and details implemented by other caregivers, so they can get started on some caregiving strategies before they meet with a navigator. Navigators like Jones begin by building a relationship with the caregiver.
"That means being kind and open and non-judgmental," Jones said. "A lot of caregivers hear judgment or opinions from their families and friends about how to provide that care. Meeting them where they're at in their journey really does go a long way."
Bularzik said navigators spend time learning about the caregiver and their family to craft a way forward.
"It's not that we have all the answers, but we will walk with you on this journey and brainstorm solutions together," Bularzik said. "The main idea that there is no perfect way to give care for someone living with dementia is true."
Recently collected data from an internal survey indicates the Memory Care Home Solutions model is successful. Dementia patients and caregivers who receive the organization's navigation services fare healthier on average. The risk of a dementia patient falling is cut by 43% with its intervention, and calls to 911 are reduced by 55%. Hospital admissions are down 32% among their clients, and emergency room visits are down 48%.
For caregivers, 96% of those served reported satisfaction with the agency's services, and 90% reported lower daily stress levels. More than 90% also reported learning new skills that improved their abilities as caregivers.
"When things are so hard and so stressful, we really encourage caregivers to focus on their basic needs — getting enough sleep and eating well and exercising," Bularzik said.
In his testimonial, Ludwig wrote that the navigators at Memory Care Home Solutions "offered me invaluable coaching and support, which I would have been completely lost without." He is currently serving as a board member for the organization.
Future growth
Burnout doesn't just affect caregivers. Medical workers and mental health professionals continue to be vulnerable in the wake of the pandemic. Jones said working in nursing homes during the early years of the pandemic left her feeling isolated and emotionally burdened. She considers herself "blessed" to have a better work environment now.
"We have to meet our basic needs before we can even try to help others," Jones said.
It's an intersection of needs that families and navigators share. Bularzik noted that a family member's dementia can be draining for their relatives. Caregivers must understand the importance of taking respite time for themselves.
Barb Hethcote had no clue what Memory Care Home Solutions was when her husband, Michael, began exhibiting dementia symptoms in 2010. He then suffered a broken hip in 2012, after which his memory loss worsened.
While Michael was receiving physical therapy for his hip, Barb Hethcote was told to contact Memory Care Home Solutions regarding caregiver assistance. She wrote in a testimonial that after her first meeting with navigators, she felt "as if I had been resuscitated from the brink of drowning in my endeavors to help Michael live as normal a life as possible without losing my own sanity."
Coaching helped Hethcote feel more confident as a caregiver. They encouraged her to simplify everyday tasks, such as removing any pieces of Michael's clothing that had buttons, laces or zippers. When staffers learned about Michael's knack for art, they arranged for an art therapy student to meet him at the Hethcotes' home. Michael died in 2020.
"MCHS helped me find ways to make the days manageable and achievable," Barb Hethcote wrote.
But funding such support for the Hethcotes and others takes significant effort.
Grants and recurring gifts are paramount to ensuring the work can continue. More than a quarter of the agency's annual income came from donations and fundraising events. Their popularity is driving expansion, but the nonprofit faces some growing pains. Bularzik said it is outgrowing the brick building gifted to it early in its existence. Although the building was tailored to suit its needs, organization leaders are talking with board members about moving to a bigger facility in the next few years.
Another limitation is staff size. Cigliana said two more navigators have been hired for a staff total of 18 people. However, navigators are already stretched to thin, and more funding is required before any additional navigator positions can be created. Passion for the work is unofficially part of the agency's hiring standards.
"We do great work for a small and mighty team," Jones said, "And we want to ensure that we're providing the best service possible in not only our state, but those beyond Missouri."
Bularzik said the agency will expand its programming in the coming months to provide more caregiver support options and increase community education about the various forms of dementia.
Village of support
There are not enough resources regionally or nationwide to help the growing population of dementia patients.
Cigliana said navigators' work will become even more important as the senior population expands nationally.
"More and more people will have to manage dementia as a family," she said. "We need more home-based options. We're really excited to be innovating at a home and community level so people can age in place, at home, with dementia."
Jones said that caregiving in any capacity, whether it's for a dementia patient or not, requires "a village of support."
"That village can look so many different ways," Jones said. "We're blessed to be a part of someone's village and to help in some way."
This story was produced through the Missouri Solutions Spotlight project, which receives funding from Missouri Foundation for Health. Articles for this project were developed by regional journalists working independently of the Foundation and supported by the staff of The Journal, a solutions-oriented nonprofit news outlet based at the Kansas Leadership Center. The Foundation had no editorial involvement, including no control over the selection, focus of stories or the editing process of Missouri Solutions Spotlight. Funders also do not review stories before publication.
Copyright 2025 KCUR 89.3