With a rapidly aging population of patients with end-stage kidney disease (ESKD) starting dialysis, the demands on caregivers have increased. The need for help with activities of daily living (bathing, dressing), mobility, transportation, social support and food preparation are often not anticipated. The burden of these additional roles and lack of support can have a major negative impact on the caregivers physical, social and emotional health.
In a recent BMC Nephrology publication, Shah et al. compared the health related quality of life and the care related quality of life among caregivers of older individuals (>75 years of age) receiving dialysis or conservative care (medical management only). Caregivers completed surveys that assessed their health related quality of life and experience as caregivers These surveys addressed areas that healthcare teams often forget such as activities outside care-giving, social support, institutional support, control over caring and relationship with the care recipient. Utilizing this survey highlights the changes in the caregiver’s life that are often not considered in counseling about end stage kidney disease management with patients and the families. While there was no difference in the HRQoL, the caregivers of dialysis patients reported a worse carer experience, where the survey results of this group reflected the perception of providing an ‘intense’ level of care to recipients in bad health and for more than 20 hours/weeks. This is especially striking considering 70% of the caregivers surveyed had been providing this level of care for >2 years. These findings highlight the need to expand the dialysis preparations and the support provided to caregivers.
Currently, protocols focus on education about dialysis modality options, early referrals for dialysis access planning/creation and information for the patient about the dialysis procedure. Most of the data that has helped shape the current approaches have been based on outcomes such as the number of hospitalizations, morbidity, mortality, nutritional status, or infection rates in patients starting dialysis with little or no preparation. While these are important issues to address, this approach does not consider the overall impact of dialysis on the life of the patient or the effects on the caregiver, including changes to their lifestyle, employment and family responsibilities. As such, many caregivers struggle with how to accommodate the needs of their family member without the skills and resources.
caregivers can experience stress, depression, feelings of being overwhelmed and social isolation.
With the increasing number of older individuals needing dialysis support, there is a higher likelihood that they will have comorbidities and thus a potentially greater need for help with care. As a result, caregivers can experience stress, depression, feelings of being overwhelmed and social isolation. This impact on caregivers was noted in another study of 100 hemodialysis patients and their primary caregivers utilizing the Short-Form Health Survey (SF-36). After more than 4 months of dialysis, caregivers were reported to have higher subjective burden scores. Current practices do not encompass follow-up with the caregivers to see how they are adjusting to the initiation of dialysis and how they are dealing with the transition. A systematic review of studies with interventions for informal caregivers demonstrated only three studies with interventions for caregivers and these involved education material to enhance caregiver knowledge.
Our approach to dialysis preparation falls short if providers are not first acknowledging with patients and their caregivers the impact of end-stage kidney disease on their lives and providing the resources and support they need during this transition period. Understanding what is important to them and what they do on a day-to-day basis in terms of work, family, and social obligations needs to be part of routine discussions. Discussions about the impact on the family and caregivers also needs to be part of the routine dialysis preparations.