Abstract
The care partner (CP) (a more contemporary label than the traditional caregiver) for your patient with multiple sclerosis (MS)—whether a spouse/partner, relative, or close friend—is integral to the success of your treatment plan. They provide care, support, and assistance to their loved one while also attending to myriad other responsibilities. Because CPs are often taken for granted by family, friends, and health care providers, their physical and emotional well-being is ignored—and they feel selfish and guilty about attending to it themselves. By including the CP in your review of findings and treatment recommendations throughout the disease course, and soliciting their input and observations, you are helping ensure the successful implementation of your plan over time as well as demonstrating sensitivity to the CP’s well-being. We offer tips to solo practitioners and specialty MS centers on ways to include CPs from the time of diagnosis forward, helping to ensure optimal treatment outcomes as well as support for the CPs who carry out your recommendations.
Introduction
When you are sitting in your consulting room with a patient with MS performing a neurologic exam, discussing test results, formulating a care plan, or answering questions, you may or may not be including the other person most likely to be impacted by the outcome of the visit. The patient's partner, spouse, sibling, adult child, older parent, or friend may not only be impacted by the recommendations you are making but may also be integral to your treatment plan’s implementation and success. As people with MS and their family members have told us, “MS is a ‘we disease’, not a ‘me disease.’” With that in mind, attending to the well-being of patients with MS as well as their CPs is essential for family well-being and optimal treatment outcomes.
In the very limited time available during office visits, it may seem impossible to attend to the needs of the patient’s CP or invite their input. Our goal is to provide you with a practical and efficient road map for engagement with, and support for, your patient’s primary CP.
Background
Given the critical role played by those who care and provide support for people with chronic illness and disability, it is surprising how little attention has been paid to them in recent years. In 1988, Andolsek and colleagues referred to caregivers as “the invisible patients.” The literature on caregiver burden, which focuses primarily on spouses and partners, describes in vivid detail the onerous responsibilities borne by a person who cares for an older, chronically ill, or disabled family member (Stucki & Mulvey, 2000). Buhse (2008) described caregiver burden as a “multidimensional response to physical, emotional, social, and financial stressors associated with the caregiving experience.” Aronson (1997) differentiated between objective caregiver burden, including hours spent, income lost, and number of tasks or responsibilities, and subjective caregiver burden, which is the person’s reaction to, and perception of, the caregiving role. In her research, Aronson found that it was this subjective response that had been associated with a greater risk of depression and reduced quality of life among caregivers. McKenzie and colleagues (2015) evaluated the impact of caregiver stress on the emotional and physical health of caregivers of people with MS who were enrolled in the North American Research Committee on Multiple Sclerosis (NARCOMS). These caregivers reported significant physical and psychological health concerns as well as an adverse impact on their employment. Not surprisingly, the caregivers of individuals with primary progressive MS experienced greater caregiving burden than the caregivers of those with relapsing or secondary- progressive MS. A 2023 qualitative study by Benini and colleagues found that caregiver fatigue, isolation, and loneliness significantly impacted caregivers’ quality of life and health status. The authors concluded, “These needs should be at the core of health policies in order to avoid physical and emotional breakdowns [that] could lead to the rupture of the relational balance on which home care is based."
One important aspect of the caregiving experience that has received almost no attention is the impact on patient outcomes. While it may be intuitively obvious that patients fare better physically and emotionally when their caregivers are cared for and supported, the data are meager. The Journal of the Catholic Health Association presented a Caring for Caregivers Model developed at Rush University Medical Center (Carbonell, 2023) to address the needs of older patients and their caregivers. The 2-pronged goal of the model (which they make available to other health systems) is to change how the health system identifies and addresses the needs of family caregivers of older adults, and to provide education and support to improve their own and their care recipients’ well-being. Participation in this program resulted in reduced caregiver burden, depression, and anxiety at 1, 3, and 6 months after participation in the program. In addition, the number of hospital admissions, length of hospital stays, and emergency department visits were lower in the 6 months following the program than in the 6 months leading up to the program. We are aware of no similar studies focusing specifically on families that are managing chronic illness and disability, but there is likely significant overlap between these and the older population.
Key Touchpoints With MS Care Partners
When CPs remain invisible to MS care providers, their physical and emotional well-being goes unnoticed by the health care team (just as it is often ignored by extended family and friends). When their exhaustion, mood changes, unhealthy habits, isolation, heightened stress, and intense anxiety about the future are ignored, these factors impact the support and care they can offer your patient. To avoid making erroneous assumptions about the health of the CP, the help and care they can provide, and the situation in the home, it’s important to include CPs in your care plan from the beginning. With that in mind, it is important to find out who is assisting and supporting your patient—who they are, what their relationship is to the patient, and in what ways they feel they can be available and helpful. Without gathering that information, you may be sending your patient off with a treatment plan that has little chance of success.
