Texas A&M study highlights urgent needs of dementia caregivers

A statewide needs assessment led by the Center for Community Health and Aging in the Texas A&M University School of Public Health has found that the unpaid caregivers of older people with dementia and the organizations that work with these caregivers largely identify the same urgent priorities: increasing awareness about resources, making services easier to access and training more providers in dementia care.

“This is important because the 65-and-older age group is the fastest-growing in Texas and is expected to increase by 88% by 2050,” said Matthew Lee Smith, who led the study team. “In addition, about 400,000 older Texans now live with Alzheimer’s disease or related dementias.”

For the assessment, the team surveyed 580 caregivers and representatives from 50 organizations that work with caregivers, including Texas A&M AgriLife Extension Service, the Texas Association of Area Agencies on Aging, Texas Healthy at Home and Texas Alzheimer’s Research and Care Consortium affiliates.

Participants were asked about the availability, accessibility and use of services for dementia and any unmet needs and barriers they faced in using them.

In addition, another 29 individuals with caregiver-serving organizations in East Texas, rural communities and Hispanic/Latino communities — where the dementia burden is greatest — participated in four, one-hour Zoom discussions that covered these topics in greater depth.

Both statewide surveys were conducted between Jan. 21 and April 29, 2025, and the four Zoom sessions were held in July 2025.

“We found that many caregivers struggle to access important support and services, even when they know they need them,” Smith said.

Caregivers reported the following key challenges:

• Availability: Many essential services — such as caregiving technologies, transportation help and planning resources — are often unavailable, especially in rural areas.
• Awareness: Caregivers were not aware of all the community resources available, but also believed there were not enough of these resources. They also reported needing help in learning caregiving skills and finding out where to go (or whom to call) for assistance.
• Access: Between 40% and 49% of caregivers have difficulty getting appointments or securing transportation to dementia-related services.
• Cost: The financial burden of quality care is a significant issue for many.
• Personal impact: Caregiving takes a heavy personal toll, with many caregivers reporting negative effects on their mental health, social lives and sleep.

“Organizations agreed with these barriers and pointed out deeper, systemic problems that might keep caregivers from knowing about and accessing the help that’s available,” Smith said.

These problems included the following:

• Care systems that are complicated and hard to figure out.
• Long waitlists.
• A lack of trained experts, especially for dementia care.
• Poor or unavailable internet service.
• Difficulty in traveling long distances to access care.

Organizations also stated that these barriers were especially burdensome for caregivers who are in rural areas, have low incomes, are older, have disabilities themselves or are Hispanic/Latino.

The Zoom discussions amplified recurring themes: Caregivers often experience burnout; they need help soon after dementia is diagnosed and help that is tailored to their specific culture; and experience a lack of professional dementia care staff, especially in rural areas.

Smith said that moving forward, organizations and policymakers should focus on the three top priorities of both caregivers and caregiver-focused organizations by enhancing outreach, simplifying service access, expanding support for caregiver well-being, increasing the dementia care workforce, addressing cultural and language barriers and improving telehealth services.

“The study’s insights are immensely valuable for setting the research and practice context in Texas,” said Marcia Ory, a Center for Community Health core faculty member and one of the study investigators.

As co-lead of Texas A&M’s Dementia & Alzheimer’s Research Initiative (DARI), she also noted how these efforts dovetail with the new Dementia Prevention and Research Institute of Texas (DPRIT), which will include research into the needs of dementia caregivers and support organizations.

“The bottom line is that Texas has strong resources for unpaid caregivers, but barriers persist in terms of awareness and access,” Smith said. “Addressing the key priorities this study identified will prepare the state for the ever-growing burden of dementia.”

Other researchers from the School of Public Health were Junhyoung “Paul” Kim; Catherine J. Catanach; Brittany Badillo; Christi H. Esquivel; Scott Horel and Oluyomi Oloruntoba; as well as Idorenyin Imoh Udoh, now with the University of Michigan-Flint.

The study was contracted by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $224,000 from these organizations. Its findings are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. government.