Family members and friends often play a significant role as caregivers for people with end-stage renal disease (ESRD) and other chronic conditions. Even though this burden can have significant financial, physical, and emotional consequences for both caregivers and patients, there are few published studies of caregivers. Gathering meaningful data about both the difficult and positive aspects of caregiving is essential if we are to design better systems of support for families and improve home-based treatment for both caregivers and patients.
Who are the Caregivers?
Many people living with a chronic condition like ESRD rely on friends and family to be caregivers. In general terms, a caregiver is a person who provides unpaid care to an adult or child with special needs. Caregiving is holistic, encompassing a range of care from emotional to physical support. You are a caregiver if you voluntarily provide or arrange for these services for someone else:
- Cooking, housekeeping, or home upkeep
- Financial management and bill payments
- Companionship and emotional support
- Oversight of health care needs, including appointments and prescriptions
- Assistance with daily living tasks
In ESRD home therapies, we often train a care partner. This is someone who supports delivery of a home-based treatment, which often overlaps with the caregiver role.
In 2015, the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP) published Caregiving in the U.S., a report providing a portrait of caregiver life in the United States.1 The report estimates that in 2014, about 43 million U.S. adults had been caregivers; the average caregiver was 49 years old, and 60 percent were women. While some were caregivers for friends, 85 percent were caregivers for a relative. On average, people spent 25 hours per week providing caregiver services, most often in addition to working a full-time job. Many caregivers did not live with the person they supported. Spouses or partners who were also caregivers in the home were among the higher-hour caregivers, averaging 44.6 caregiving hours per week.
What is the Cost of Caregiving?
The 2015 report provides details on the burdens of caregiving. Notably, 40 percent of caregivers reported increased stress, but most felt that, overall, caregiving activities had not adversely affected their personal health. This report, as well as a 2016 report by AARP, focused on out-of-pocket costs for family caregivers, and the majority (78 percent) noted a financial cost to caregiving activities.2,3 Caregivers incurred direct costs when buying groceries, medications, and medical supplies and when providing transportation. They also often assisted with paying bills for rent, mortgage, or home repairs. Indirect costs include buying more meals out for themselves instead of cooking at home due to lack of time and energy, and having to hire extra personal help to take care of home and family. Caregiving duties also resulted in lost time at work because they had to reduce their hours or miss work entirely.
Caregiving in ESRD
Caregiving support is commonly needed for patients with chronic conditions, so it is not surprising that it is an important topic in chronic kidney disease (CKD) and ESRD. The number of patients on dialysis therapy increases every year. The U.S. Renal Data System’s 2017 Annual Data Report shows 486,297 patients on hemodialysis (HD) and peritoneal dialysis (PD), an increase from about 55,000 patients in 1980.4 The rate of ESRD, or prevalence per million, is highest for older patients in the 65-74-year-old age group. Patients 75 years and older had the highest incidence rate per million per year of ESRD in 2015.5 Concomitant with the aging of the dialysis population is an increased interest in home therapies, with 8.6 percent of patients using a home-based therapy in 2015 compared to 7.4 percent in 2008.6 Family and friend caregivers provide increasing support for older patients with chronic conditions who often benefit from home therapies.
ESRD treatment with dialysis is an active daily therapy, so daily caregiver support is often needed for the youngest and oldest patients. Older patients with ambulatory, vision, or cognitive impairment may need support for transportation to in-center treatment three times per week. When not physically receiving treatment, patients need to monitor dietary and fluid intake and take multiple medications related to dialysis, in addition to receiving support for underlying comorbidities and frailty. Pediatric patients depend entirely on caregivers to meet daily ESRD care.
Studies of parents caring for children with CKD reveal some common themes related to the stress and burden caregivers experience:7
- Intrapersonal theme: Caregivers experience psychological and physical symptoms, including feelings of dismay, disbelief,
- Interpersonal turmoil: Caregiving impacts relationships with spouses, family, friends, and other children.
- External needs: Caregiving introduces strain in balancing CKD care with other responsibilities to meet household and financial responsibilities.
Manifestations of the internal and external stresses related to caregiving result in:
- Deterioration of family relationships
- Social isolation
- Excess medication use
- Decreased quality of life
- Increased mortality compared with non-caregiving peers
Not only can caregiver burden result in adverse outcomes for the caregiver, but it also impacts patient outcomes.8,9,10 In a 2006 study of children on dialysis and their families, depression was more common among the parent or guardian caregivers. These parents were also less likely to have a full-time job than their peers. The chronic illness adversely impacted family functionality and socioeconomic status.11
Caregivers are a critical part of the success of home dialysis therapies, but there are few published studies of home therapy caregivers. In a 2006 systematic review of the literature on support interventions for CKD caregivers, the authors found only three studies of caregiver support interventions.12 In these studies, educational interventions for caregivers were delivered, but neither caregiver nor patient outcome data was reported. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative has convened a work group to identify a core set of standard outcome measures that are important to both patients and caregivers in PD, to improve information on meeting patient goals of care.13 A standard set of measures will help future investigators study a meaningful set of outcome measures for PD patients and caregivers.
In-center HD patients and their caregivers were interviewed about their impressions and concerns about home HD, and the results were published in 2013.14 Of note in this study, 85 percent of the caregivers were women ages 38-78 years, and 60 percent were spouses. Positive perspectives about home HD included flexibility, freedom, and comfort care in a family surrounding. Negative impressions included disruption of normal living and family burden. In the interviews, caregivers expressed feelings of inadequacy, apprehension, and fear about managing medical complications, which made them feel that their loved one was better cared for in a facility with health care professionals. The following are some suggestions for patient and caregiver support for home HD, based on this study:
- Peer mentoring from patients and families already successful on home HD
- A forum for patients and families to share ideas and experiences
- Psychosocial support for the whole family
- Respite support services for the caregiver
- 24/7 technical support
- Community and socialization opportunities for patients and caregivers
Caregivers are pivotal to good patient outcomes in chronic care. Caregiver support is vital for the growing population of older dialysis patients as well as the pediatric dialysis population. Studies demonstrate the personal and family burdens of caregivers involved in chronic illness. In particular, in ESRD home therapies, caregiver health can impact patient outcomes and the ability to continue home treatment. While more studies are needed, current data provides insight for activities that can improve patient and caregiver stability and resiliency.
Meet Our Expert
Dugan Maddux, MD, FACP
Vice President, Kidney Disease Initiatives, Fresenius Medical Care
Nephrologist Dugan Maddux champions FMCNA’s clinical innovation endeavors across the continent and is co-founder of the Gamewood companies, including Acumen Physician Solutions. Blogger, writer, and essayist, she developed the Nephrology Oral History project chronicling early dialysis pioneers. She holds her bachelor’s degree in chemistry from Vanderbilt University and her doctor of medicine from the University of North Carolina at Chapel Hill.