Who Cares for the Caregivers?

Researchers from social work and public health are investigating new ways to improve the quality of life for patients with Alzheimer’s disease and those who take care of them.

By Ashley Festa

More than 50 million people worldwide are living with Alzheimer’s disease and related dementias, and millions more, including family caregivers, face the challenges cognitive impairments cause in daily life.

Dozens of faculty and student researchers at The University of Texas at Arlington are conducting studies not only to try to detect these conditions earlier, but also to help improve the quality of life for all who are affected. The outcomes of these projects have shown encouraging results, benefiting patients, caregivers, health care workers, and even UTA student volunteers. They’re also building optimism for the future of dementia-related care.

Combating Loneliness and Isolation

Although the COVID-19 quarantine helped keep people physically safe, the solitude took a toll on emotional and mental health for young and old alike. Millions of older adults with dementia and memory loss in the U.S. were already feeling isolated, as more than half of them live alone. COVID lockdowns only exacerbated and spread such feelings to younger populations.

In response, a group of UTA researchers and student volunteers came together to study how they might build positive social and emotional connections between younger and older generations, particularly for people with cognitive impairment.

The resulting study accomplished more than just cultivating relationships. The young student volunteers learned about past generations, while the older adults, through reminiscing, were able to remember ways they overcame challenges in their past, helping them build resilience to face future struggles.

“When reminiscence is positive, older adults remember, ‘I was successful in the past; I have these strengths; I can use them in the future,’” says Ling Xu, associate professor of social work and principal investigator (PI) of the study. “Many reminiscence-based approaches use professional psychologists or social workers, which is very costly. Plus, not all older adults feel comfortable in that setting. So, for our study, we used student volunteers for cost-effective and sustainable manpower and for the intergenerational aspect.”

For the project, she joined Noelle Fields, associate professor of social work and co-PI; Kathryn Daniel, associate dean for academic affairs in the College of Nursing and Health Innovation (CONHI); Daisha Cipher, CONHI clinical associate professor; and Brooke Troutman, scholarly communications librarian, to pair students with older adults to develop emotional connections and improve their quality of life.

The 100-plus volunteers—UTA students ages 18-30 from a variety of academic majors—received training on dementia and reminiscences. The designated intervention group learned how to create a digital story and took conversation guides—semi-structured interview questions about family life, spirituality, significant life turning points, and more—into their meetings with the adults, who were 65 or older and had cognitive impairment. The control group learned how to create a social wellness scrapbook and discussed general social and wellness topics with the older adults.

Due to COVID-19 restrictions, weekly meetings had to be conducted via telephone rather than face-to-face. Nevertheless, while all participants mentioned improvement in social connection, only the intervention group showed a positive effect on emotional loneliness, quality of life, and resilience. In fact, some of the student and adult dyads chose to continue conversing after the study ended.

“A number of students told us how they missed their own grandparents, and this project filled that need to talk to an older person,” Dr. Fields says. “The older adults enjoyed having the ability to connect with younger generations to pass on the life lessons they’ve learned.”

Teaching Advocacy Skills

According to the latest research from the Alzheimer’s Association, rates of Alzheimer’s disease and related dementia will triple during the next 30 years, with African Americans being disproportionately affected. As family caregivers are the main providers of support to those living with the disease, Fields and Dr. Xu have focused some of their research on providing them with training and strategies on how to best do so.

“Family caregivers for people with dementia are faced with many challenges in their role compared to non-dementia caregivers,” Xu says. “Those challenges may include high levels of stress, depression, anxiety, and health impairments.”

Funded by a grant from the National Institutes of Health, the team worked with partner agencies in three states, including Senior Source Inc. in Dallas, to connect with volunteer senior companions who are trained to work with older adults in the community. Fields and Xu developed specific training for caring for people living with Alzheimer’s or related dementias, which they then gave to the senior companions to share with the family caregivers. Research has shown that African American patients may feel concerned about having strangers in their homes, so receiving the information from a trusted senior companion is more effective.

“Many family caregivers wouldn’t talk about stress and burden because they felt it was an honor to take care of their parent. So the senior companions also focused on the positive aspects of caregiving, emphasizing that what they do is meaningful,” Fields notes. “The information they provided can help reduce caregiver stress and help them feel more socially connected.”

Caregivers also learned more effective ways to communicate with health care professionals, a specific need in the African American community.

“Disparities and racism in the health care system create barriers to communication,” Fields says, “so this information can help African American caregivers feel more prepared and confident about going into appointments and empowered to speak up and ask questions.”

Though the pilot program was small due to COVID-19 restrictions, the results were promising. Xu says after the training, the senior companions gained more knowledge of dementia and were more competent in caring for people living with dementia. Caregivers in the intervention group also reported significantly decreased caregiving burden as well as increased knowledge of dementia, satisfaction with social support, and positive aspects of caregiving.

Sharing Educational Resources

Chinese and Korean families rely heavily on multi-messaging mobile apps, particularly KakaoTalk and WeChat, to communicate with family and friends. But could that communication also include information on how best to care for people with Alzheimer’s or related dementias? That’s the question Kathy Lee, assistant professor of social work, and Christoph Csallner, professor in the Department of Computer Science and Engineering, are trying to answer.

Working with partners such as the Korean American Family Service Center in Dallas and Somang Society in California, the researchers are examining how these messaging platforms can help users share third-party links about Alzheimer’s resources with their online community.

Dr. Lee has found that using these apps helps mitigate some of the challenges that Asian Americans face daily in caring for loved ones with dementia, particularly immigrant families juggling work and caregiving responsibilities. They often do not have time to seek out dementia-related resources, so sharing information published in their own language via mobile messaging services they are already familiar with increases accessibility.

“Due to the lack of culturally and linguistically appropriate resources in the community, these caregivers are less likely to use formal support like adult daycare and transportation services, and they are more likely to rely on each other,” says Lee, who conducted qualitative interviews with dozens of caregivers for her study. “Home-based care is important to them, but their lives are so busy with work.”

Her findings have shown that due to the stigma around dementia, caregivers often do not want to discuss the topic at social gatherings, where they might find peer support.

“They are private, but they need help. Through an online-based community, they’re more likely to connect with others, exchange information, and get educated,” she says. “They can support each other along the way.”

Preparing Paramedics

While paramedics are trained to provide emergency care, they do not always have specific skills to help people with dementia. Erin Carlson, CONHI clinical professor, wants to change that, both to help patients and caregivers in distress and to alleviate the burden that non-emergency 911 calls put on the health care system.

So she spearheaded an effort to create and evaluate health literacy trainings for emergency medical service providers that helps them better identify and treat patients who could be suffering from dementia. For the program, Dr. Carlson partnered with the Alzheimer’s Association, MedStar Health, the Center for Older Adults at the University of North Texas Health Science Center, and her former student Teresa Wagner, who is now an assistant professor at the latter and director of its Community Health Worker Training Program.

She and her collaborators took a three-pronged approach to training by teaching emergency responders to 1) effectively communicate with people with dementia, 2) communicate with caregivers in ways they can easily understand, and 3) make referrals to community resources that can provide families with long-term support.

In her final evaluation of the pilot project, published in an article in EMS World magazine, Carlson found that resource referrals had sharply risen and that paramedics had significantly increased their understanding of how to communicate with patients and caregivers.

“We found a tremendous number of 911 calls were matters of how to communicate with someone with dementia—such as how to calm them down or to permit a caregiver to perform an action necessary for their health,” Carlson says. “These families needed help, and the most efficient way to provide that was through health literacy. Training first responders to communicate effectively and to make referrals to the Alzheimer’s Association and other agencies to prevent this level of crisis in the future helped families feel better supported.”