Organizers of the 2021 World Kidney Day (WKD) on March 11, which had as its theme “Living Well with Kidney Disease,” describe the important role of “family members and other care partners”
in helping patients with kidney disease. But what is the difference between a caregiver and a care-partner?
A caregiver provides care for someone who is unable to care for themselves, whereas a care-partner is often an informal caregiver who is also a family member or close friend of the patient. According to Huntington’s Outreach Project for Education at Stanford University, “The difference between caregiver and care-partners is that of a one- versus a two-way street.” A caregiver can be a paid helper to look after a sick or disabled person. When the caregiver is a family member or a friend, however, regardless of being compensated or not, the person is often more intensely involved than a hired caregiver with an otherwise independent life during non-caregiving hours.
If a patient suffers from a chronic or debilitating disease state with multimorbid conditions such as advanced CKD, the day-to-day activities of the care-providing family member may be more profoundly affected. The resulting relationship between the patient and caregiver evolves into a natural partnership given joint responsibilities with implications on life participation for both.
Caring for a partially incapacitated family member with progressive CKD can impose a substantial burden on a care-partner and may impact family dynamics. Care-partners of patients with CKD may take on a
wide range of responsibilities, such as preparing for and transitioning to dialysis therapy, transporting patients to and from dialysis treatment and other appointments, administering oral medications and injections, assisting with home dialysis, and meal preparation. For care-partners, who are often spouses or children or parents of the patient, these activities may take a toll on their daily lives for an extended period. Not infrequently, this involvement in a patient’s care has a negative effect on care-partners’ career goals, leisure activities, and other aspects of their lives. Care-partners may experience depression, fatigue, and isolation, resulting in overload and burnout.
As healthcare providers, it is imperative that we accurately understand and appreciate the status of care-partners for patients with CKD, especially now given the greater complexity of caring for patients during
the COVID-19 pandemic. Therefore, our efforts to improve patient empowerment, health outcomes, and quality of life should apply to family members and friends. Let’s team up to support and empower both patients and their care-partners to live well with kidney disease.