A Rationale and Step-by-Step Strategy for Including Care Partners in MS Care

The care partner (CP) (a more contemporary label than the more traditional ‘caregiver’) for your multiple sclerosis (MS) patient – 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 a myriad of other responsibilities. Because care partners are often taken for granted by family, friends, and healthcare 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 wellbeing. We offer tips to solo practitioners and specialty MS centers on ways to include CPs from the time of diagnosis onward, helping to ensure optimal treatment outcomes as well as support for the care partnerships that carry out your recommendations.

When you are sitting in your consulting room with a multiple sclerosis (MS) patient) performing a neurologic exam, discussing test results, formulating a care plan, and answering questions, you may or may not be including the other person most likely to be impacted by the outcome of the visit. An MS patient’s partner, spouse, sibling, adult child, elderly 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 wellbeing of MS patients as well as their care partners (CPs) is essential for both 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 care partner or invite their input. Our goal is to provide you with a practical and efficient roadmap for engagement with, and support for, your patient’s primary CP.

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 (1988) 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 elderly, 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 has 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 that “These needs should be at the core of health policies in order to avoid physical and emotional breakdowns which 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 of the United States presented a Caring for Caregivers Model developed at Rush University Medical Center (Carbonell, 2023) to address the needs of elderly patients and their caregivers). The two-pronged goal of the model (which they make available to other health systems) is to change the ways 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 who are managing chronic illness and disability, but there is likely significant overlap between these and the elderly population.

When care partners (CPs) remain invisible to MS care providers, their physical and emotional well-being goes unnoticed by the healthcare 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.

If you suspect neglect or abuse (of either partner)

Speak to each person alone to assess the situation (insist upon it if necessary), keeping in mind that either or both partners can be abused and feel unsafe)
- Patient: “Do you feel safe in your home? Are you needs being met” “Is there anything I should know about your care?” I want to connect you to the resources you need.”
- Care Partner: “We know that the type of care you are providing can be stressful and exhausting. We also know that anyone can get to a breaking point. Are you close to yours? What are the biggest challenges for you? Are you experiencing verbal, emotional, or financial abuse of any kind? What else would you like me to know? Iwant to connect you to the resources you need.”
Other steps you can take:
- Connect one or both partners with the National MS Society crisis line (1-800-344-4867) for intervention
- Request a Safety Check by the local police or fire department
- Prescribe a Visiting Nurse social work assessment
- Call your state social services (www.usa.gov), if necessary

Resources for Care Partners

Websites:

MSCarePartnerConnection.com

National MS Society.org

CanDo-MS.org

Caregiver.org

CaregiverAction.org

Books with chapters for care partners:

Multiple Sclerosis for Dummies – 3^rd edition (2025)

Navigating Life with Multiple Sclerosis – 2^nd edition (2025)

Sample Care Partner Form

What new symptoms or changes have you noticed in your partner since the last visit?

Physical: ________________________________________________________________________________ Mood: __________________________________________________________________________________

Thinking and Memory: ____________________________________________________________________

Sexual intimacy: _________________________________________________________________________

Has your partner fallen? __________________________________________________________________

Are you and your partner getting adequate sleep? ___________________________________________

Have you found sources of support for yourself: ____________________________________________

Are you feeling particularly anxious, sad, depressed? _______________________________________

Are you getting time for exercise, alone time, recreation, social interaction? ___________________

Are you attending to your own preventive healthcare? _______________________________________

Are you relying on alcohol or other substances to manage your stress? _______________________

Is there anything else you would like me to know? __________________________________________

Healthy care partnerships offer a strong foundation for your treatment plans. You can help these partnerships thrive by attending to the physical and emotional well-being of your patients and their primary CPs from the beginning. In spite of the limited time available in your follow-up visits, you can set the stage by acknowledging the CP role, inviting their input, and helping them to connect to helpful resources.