Behind each of the 725,000 Americans with end-stage kidney disease is a caregiver struggling to cope. How might nurses create interventions that better support them?
Thirty million Americans have chronic kidney disease, and more than 725,000 mostly older adults have end-stage kidney disease, which requires hemodialysis, often occurs with other co-morbidities, like diabetes and cardiac disease, and puts them at greater risk for cognitive impairment, a condition associated with a host of poor outcomes.
725,000+Number of mostly older American adults who suffer from end-stage kidney disease
For those caring for loved ones with issues of end-stage kidney disease and cognitive impairment, the challenges are vast and often overwhelming. Caregivers who provide crucial practical and emotional support to loved ones with advanced chronic kidney disease—taking them to and from appointments, managing their medications, diet, and routine activities of daily living—report high levels of distress related to those demands. It’s clear that interventions must be created to support them, but little has been done to identify them. Most patients with advanced kidney disease haven’t been screened for cognitive decline, even though it’s strongly associated with their condition and clinically recommended.
That’s a missed opportunity, explained assistant professor Maureen Metzger, given the need to address factors that negatively affect cognition, refer patients to resources and advance-care planning, and support overwhelmed caregivers.
“When dementia enters the picture, caregivers who already report high levels of distress have an even more complex path through the healthcare system,” said Metzger. “We already know these caregivers would benefit from additional support, but because we lack an understanding of the prevalence of cognitive impairment in this population, development of those interventions is hindered.”
With a $45,000 grant from the Alzheimer’s and Related Diseases Research Award Fund, Metzger and her research team (which includes associate professor Ishan Williams, UVA Health nephrologist Emaad Abdel-Rahman, and statistician Jennie Ma) will estimate the prevalence of and identify barriers to cognitive screenings of end-stage kidney disease patients. Recruiting 100 dialysis patients with end-stage kidney disease age 50 and older from UVA Health’s 11 dialysis clinics, trained nursing student research assistants will screen patients for cognitive decline and depression. The team will track the feasibility and acceptability of these clinic screenings, estimate the prevalence of cognitive impairment, and examine how and which resources they use.
Concurrently, Metzger will interview and survey 60 caregivers to understand their needs and experiences. Results—available in early 2022—will inform the development and empirical testing of interventions to address screening barriers for patients and inform support offered to their caregivers.
“We know these groups need help,” said Metzger. “Our study will address that information gap.”