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Two NIH grants fund dementia caregiver research

Pickering, Yildiz receive awards from National Institute on Aging

Dr. Carolyn Pickering and Dr. Mustafa Yildiz.

Scientists at Cizik School of Nursing at UTHealth Houston will expand their work with family caregivers of people living with dementia through a pair of two-year grants from the National Institute on Aging (NIA) of the National Institutes of Health.

Carolyn Pickering, PhD, RN, will build on her currently funded research to better understand caregivers’ use of medications for behavioral symptom management, and Mustafa Yildiz, PhD, aims to improve a tool used to assess the quality of relationships between providers and caregivers.

Both will draw on the resources of the Pickering Caregiver Lab, which has developed long-standing relationships with clinics, caregivers, and community groups as well as registries of dementia caregivers willing to participate in research studies.

Caregiver-provider interactions

Yildiz was awarded $312,000 for his study, “Revising the CPRA: Eliminating Method Bias to Strengthen Measurement of Caregiver-Provider Relationships (R03AG101074-01).” Pickering is co-investigator on the project.

The CPRA, or Caregiver-Provider Relationship Assessment, is a 15-item self-reporting instrument used with family caregivers of patients living with all types of health conditions. It is designed to measure caregivers’ perceptions about the quality of their relationships with healthcare providers. However, several of the questions are worded negatively and may introduce bias, explained Yildiz, an assistant professor in the Department of Research.

“The quality of interactions between caregivers and healthcare providers is critical to ensuring effective communication, care delivery, and informed decision-making,” he said. “However, family caregivers often report a lack of communication, discontinuity of information, and poor information sharing by healthcare providers.”

The ultimate goal of Yildiz’s project is to revise and validate the CPRA to improve accuracy, thereby laying the groundwork for interventions to improve healthcare providers’ communication skills.

Over 16 months, Yildiz will recruit 175 family caregivers of people with Alzheimer’s and related dementias (ADRD) who will, at different time points, complete the existing CPRA and a version revised with more positive language. The research team will collect demographic information as well as data on caregiver burden and perceived stress. During analysis, researchers will look for potential response bias among various demographic groups.

“Our goal is to provide researchers and clinicians with a reliable tool to study and improve caregiver-provider interactions,” Yildiz said.

Medication use

Pickering’s newest project grew out of her on-going NIA-funded R01 study on medication decisions made by family caregivers.

“We anticipated that this line of work would result in changes to drug prescribing practices for people with ADRD,” Pickering said. “However, we are finding that nonprescribed medications are often used to manage behavioral symptoms, and we have an urgent need to better understand family caregiver’s decision-making processes around medication administration.”

She was awarded $156,000 for the new study, “From Beliefs to Behavior: Understanding Mechanisms of Unsafe Medication Use for Behavioral Symptom Management in Dementia Caregiving (R03AG105037).” Her long-time collaborator Vicki Winstead, PhD, MA, is co-investigator.

Of more than 160 family caregivers interviewed through the R01 study, nearly a third reported using over-the-counter medications to manage behavioral symptoms, and about 8 percent said they have administered drugs prescribed to other people, Pickering noted. The caregivers generally view these practices positively without recognizing the risks.

Pickering’s new study will begin with in-depth interviews of 35 family caregivers who have participated in her ongoing study. Her aims are to create a typology characterizing caregivers’ belief systems about medication use for behavioral management, and to develop a process model describing their situational decision making regarding medication administration.

“By providing foundational knowledge about how caregivers make these high-stakes decisions, this project will advance dementia caregiving science and improve health outcomes for vulnerable older adults and their families,” Pickering said.

Pickering is a professor in the Department of Research at Cizik School of Nursing, the Isla Carroll Turner Chair in Gerontological Nursing, director of the Cizik Nursing Research Institute, and director of the administrative core of the Roybal Center for Elder Mistreatment Intervention Research.

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