Exhausted caregivers of dementia patients have a lifeline in Fort Worth
When Sande Lyons first began caring for her husband, who suffers from dementia, she felt like she was constantly taking care of him.
“Before, I just felt like that’s all I was doing was caregiving,” Lyons said. “No break whatsoever.”
That changed when Lyons and her husband enrolled in a new federal program being offered in Fort Worth. The program is working to support patients living with dementia and their caregivers, and ultimately reduce patients’ need for nursing home care.
The initiative, called Guiding an Improved Dementia Experience, or GUIDE Model, is offered at 327 locations across the U.S., including UNT Health Fort Worth.
The program aims to keep people with dementia in their homes longer, prevent hospital visits, and support caregivers with the immense burden they face in caring for loved ones, said Dr. Janice Knebl, chief medical officer of UNT Health’s Clinical Practice Group.
More than 7 million Americans are estimated to live with Alzheimer’s disease, the most common form of dementia, and that number is expected to grow to nearly 14 million by 2060, according to the Alzheimer’s Association. Caring for people with dementia places immense strain on their caregivers, typically family members or friends who step in to care for their loved one in a time of need. In studies and surveys, caregivers often report high levels of emotional stress from caregiving, and are more likely to report experiencing depression or anxiety. In Texas alone, there are more than 1 million caregivers who provided nearly 2 billion hours of unpaid care in 2024, according to the Alzheimer’s Association.
The GUIDE program helps by supporting caregivers and offering them education and guidance for how to care for their loved one with Alzheimer’s or other forms of dementia. The program includes support from an interdisciplinary team that includes doctors with dementia experience and care navigators. The care navigator is someone that leads the caregiver, “helping them through the journey, basically navigating that journey with their loved one,” Knebl said. There’s also 24/7 access to support for urgent questions from caregivers.
When Knebl’s own mother developed Alzheimer’s, Knebl said she felt lucky because she knew how to care for her mother after spending her entire career in geriatric medicine.
“This isn’t intuitive,” Knebl said. “There’s no playbook.”
For the Lyons, the GUIDE program has made a huge difference for both caregiver and patient, Sande Lyons said. The program includes a $2,500 stipend that can be used for respite, so the caregiver can take a break. Lyons’ husband, Rich, now participates in the day program at James L. West Center for Dementia Care in Fort Worth. Lyons also has home care for her husband twice a week.
“Getting a break is imperative for caregivers,” Lyons said. “I have discovered that, maybe the hard way, but I have discovered that it is imperative.”
The initiative, which launched in July 2024, is a demonstration program from the Centers for Medicare and Medicaid Services, and will run for eight years. The federal government hopes that ultimately, this program will help save money by preventing hospital visits and nursing home stays, Knebl said.
This story was originally published January 7, 2026 at 11:57 AM.
