Understanding Diverse Caregiver Experiences and Their Impact on Caregiver Burden in Multiple Sclerosis Free

Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative autoimmune disorder characterized by demyelination of the central nervous system.¹  As of 2020, 2.8 million people worldwide were estimated to be living with MS,²  and that number is increasing.³  The disease can have an unpredictable disease course,⁴  and as it progresses, worsening of the many physical and cognitive symptoms associated with the disease can create a need for family members or others to provide informal care.⁴  For most people living with MS, informal care is provided by a caregiver, defined as a person providing physical, psychological, and/or emotional assistance to another person, typically for an extended period.⁵  Care for people with MS is estimated to be provided by an informal caregiver in 80% of cases,⁶  with caregivers spending 6.5 hours a day, on average, providing care; this equates caregiving to nearly full-time, unpaid work.⁷  Caregiving can be accompanied by physical, social, psychological, emotional, and financial strain, referred to collectively as caregiver burden.⁵  Caregiver burden can have a negative impact on the quality of life and well-being of the caregiver.⁸ 

Although there is a general paucity of MS caregiver research, the findings of the few available research studies have often been interpreted from a clinical perspective, without consideration of the many sociocultural aspects that produce a widely heterogeneous population of caregivers and care recipients.⁹  Thus, in addition to the clinician perspective, this article also presents the experiences of our caregiver and care recipient authors, Brian Elter and Mark Williams, respectively. (See  Appendix for provided information about authors.)

In this review, we discuss the key factors that contribute to caregiver burden in MS. We identify gaps in our understanding of diverse caregiving groups and caregiving responsibilities as they contribute to caregiver burden, and we discuss potential strategies to broaden our understanding of—and reduce—caregiver burden.

The concept of caregiver burden can be hard to conceptualize and quantify due to the various definitions and measures that exist. In caregiver burden research, burden is often categorized as being either objective or subjective (FIGURE 1).⁹ 

Objective burden is the time spent completing observable caregiving tasks associated with the patient's needs^7,9  and is typically quantified as time taken to carry out care-related tasks.⁹  For example, MS caregivers may assist with basic activities of daily living such as dressing, cleaning, and household tasks, as well as instrumental activities of daily living such as organizing medical appointments and transporting care recipients to them.¹⁰ 

Caregiving for people with MS is associated with considerable objective burden, even in patients with relatively mild physical disability,¹¹  and often requires considerable time commitments that impact other activities such as employment.⁹  Objective burden has been shown to be associated with economic cost and losses in productivity, which can lead to significant financial burden.⁹  For example, more than 40% of MS caregivers reported missing work in the past year due to caregiving commitments.¹²  A 2022 analysis of the economic burden of MS in the United States found that the indirect costs (costs not associated with disease management) of MS include $4.2 billion to unpaid caregivers each year,¹³  with indirect costs per caregiver averaging $4333 per year.¹³ 

Subjective burden can be defined as caregivers’ feelings as they fulfill their caregiving tasks.⁷  In a 2015 analysis of subjective burden, the most commonly reported feelings were fear for the care recipient's future, stress of caring alongside other professional/familial responsibilities, feeling embarrassed by their care recipient's behavior, not having enough time for themselves, feeling they should be doing more for their care recipient, and feeling burdened with caring responsibilities.⁷  Another study found that fear for the future is often worse in caregivers than in care recipients.¹⁴  A final study found that close relatives of people with MS may experience anticipatory grief and fear of the future in the context of MS, such as relapse and disease progression.⁹ 

More time spent in the caregiver role is associated with greater likelihood of experiencing subjective burden,¹⁵  and subjective burden is more strongly correlated to well-being than objective burden.⁷  Specifically, subjective burden has strong associations with mental health, including caregiver depression.¹⁶ 

MS caregivers have significantly greater activity impairment; poorer mental and physical quality of life (QOL) and health utility scores; and more health care provider (HCP), emergency department, and hospital visits for themselves when compared with noncaregivers.¹⁷  A 2023 study of the clinical impact on MS caregivers found that the likelihood of having chronic conditions increased with the disease severity of the care recipient.¹⁸  MS caregivers of patients with moderate/severe MS had increased rates of hyperlipidemia, hypertension, gastrointestinal disease, diabetes, arthritis, and chronic lung disease.¹⁸  Care recipient disease severity was also associated with increased rates of substance abuse, alcohol disorder, depression, and anxiety in caregivers.¹⁸  Therefore, the chronic stress of caregiving may be a risk factor for chronic health conditions and for engaging in unhealthy lifestyle behaviors such as sedentariness, poor nutrition, social isolation, and the improper use of substances such as alcohol/prescription drugs.¹⁸  Poor caregiver well-being can also have a reciprocal impact on care recipient well-being. A 2016 study in cancer reported: Caregivers with poor mental health are less likely to provide high-quality care,¹⁹  which could result in poorer patient outcomes.

BE and MW: From a caregiver perspective, objective burden may not necessarily result in reduced caregiver well-being, and, in some cases, caregivers may find the caregiving tasks associated with objective burden to be somewhat rewarding. However, we feel that, in many cases, it is subjective burden that often results in reduced caregiver well-being. As MS can be very unpredictable and, frankly, scary, it is natural that Brian, as a caregiver, is constantly worried about the future.

Many caregiving tasks that require significant time and financial commitments, and thus contribute to objective burden, are often overlooked and can have a substantial impact on both caregiver and care recipient. Some examples include managing legal and financial affairs as well as the time and money spent modifying our home to improve safety and accessibility for Mark. That often means monitoring online platforms such as eBay, disability trading websites, and other marketplaces for equipment that may be available to help us with a future need. We must also be very organized and intentional with our daily plans. For example, many buildings are still not wheelchair accessible; therefore, we need to research in advance which places will be accommodating of our needs. Additionally, simple everyday tasks, such as a morning routine of having coffee, taking a shower, and getting dressed, may take us 4 hours to complete. When Mark is busy, such as with physiotherapy, Brian will spend that time completing household chores and preparing for upcoming caring duties, which leaves very little time for other activities. When we are able to outsource Mark's care, dealing with and managing support staff still requires a considerable amount of time and effort [from Brian], including tasks such as creating detailed documents outlining Mark's routine and care needs.

As Mark has been on his MS journey for nearly 30 years, we have seen many changes to our working lives over that time. Mark's previous employer made as many accommodations as possible to support his ability to work, from installing motion-activated doors to providing a parking space just a few feet from his office. Unfortunately, Mark's advancing MS symptoms eventually meant that he could not safely return to work. At the time, Brian was also seeing great success in his career but was required to take a more active caregiving role. Shortly thereafter, Brian also became the primary caregiver to another family member. As time went on, it was increasingly difficult for Brian to balance his career with his responsibilities at home and, after exhausting many external resources, Brian made the difficult decision to step away from his career and focus on taking care of his family. For many people with MS and their caregivers, having to step back from their career can have significant financial and emotional impacts on their lives.

As MS is a lifelong disease that affects a broad range of people, the experience of MS caregiving can be incredibly diverse and complex, often changing over time. As described, patient factors, as well as demographic and socioeconomic factors, can influence a caregiver's level of burden.

As a patient's MS progresses, we can expect their care needs to evolve as symptoms emerge and worsen. In many cases, caregiver burden becomes greater as the physical and cognitive disability of their care recipient increases. For example, higher MS caregiver stress and caregiver burden are associated with higher disability scores (ie, on the Expanded Disability Status Scale).^7,20  Caregiver burden is also greater in those caring for people with progressive forms of MS (primary and secondary progressive MS) compared with those with relapsing forms (relapsing-remitting MS).¹² 

Cognitive disability/neuropsychiatric conditions and dysexecutive function in people with MS are associated with MS caregiver burden.^7,21  Lower working memory capacity, information processing speed, executive functioning, and verbal fluency were associated with worse caregiver health-related QOL in a comprehensive analysis of cognitive impairment in patients with MS.²²  One study found that the severity of care recipients’ cognitive problems predicted the risk of depressive symptoms in caregivers independently of other MS-related symptoms.²³ 

Although there are many studies on caregivers’ experience of burden, the literature is primarily focused on middle-aged, heterosexual, spousal caregivers.²⁴  However, in a real-world setting, caregivers are likely to be much more diverse (FIGURE 2).

As a consequence of the lifelong nature of the disease, MS caregivers can be any age, and many caregivers will age alongside their care recipients. Slightly more than half of caregivers (54%) are over the age of 50 years.²⁵  As people with MS age, their need for care also tends to increase as symptom progression leads to greater levels of disability.²⁶  Older caregivers may therefore be required to provide higher levels of care while experiencing health complications themselves, greatly increasing the physical burden of care.⁹ 

As of 2020, an estimated 24% of caregivers were between the ages of 18 and 34 years and most tended to provide care to people older than themselves.²⁵  Young adult caregivers report a variety of unmet needs and burdens, likely due to the developmental responsibilities of their age group, such as pursuing higher education, developing careers, starting families, and obtaining financial independence.²⁷  This balancing act heightens the financial and emotional burden of caregiving,²⁷  leading young adult caregivers to experience a higher prevalence of mental distress, fair to poor health, and chronic health conditions than their peers who are not caregivers.²⁸ 

In some cases, people with MS require informal care from a young child or adolescent (ie, 4-18 years of age) in their family. Child and adolescent caregivers often do not receive the same education, support, and acknowledgment as adult caregivers.²⁹  An analysis of 91 child caregivers to parents with MS reported that the total amount of care provided was associated with lower life satisfaction in child caregivers, along with somatization of psychological distress.³⁰  Additionally, child caregivers to parents with MS that provided more instrumental (eg, scheduling/attending appointments, managing money) and socioemotional care (eg, making sure their parent is safe, happy, and kept occupied) presented with poor psychosocial adjustment over time.³⁰  Poor psychosocial adjustment in these children may be due to instrumental and socioemotional caregiving tasks requiring more adult-like behaviors, which results in the parentification of the children.³⁰  Parentification has been shown to cause psychosocial, cognitive, and emotional difficulties in caregiving youth.³¹ 

When the burden becomes overwhelming, and when the caregiver role is not assumed by choice, children can experience restricted access to social networks; school absenteeism; educational underperformance; and financial and emotional problems, which can lead to a compromised transition to adulthood.³²  Although caregiving youth receive recognition in international research, policy, and services, the US does not formally acknowledge or support this population³³  and young caregivers of single parents diagnosed with MS report feeling unsupported, excluded, and abandoned.³² 

Alongside caregiver age, gender differences also affect the caregiving experience. Female MS caregivers have higher levels of objective and subjective burden than male caregivers,^12,34,35  with female MS caregivers reported as spending nearly twice as much time providing care as their male counterparts.³⁴  Male MS caregivers are more likely to experience physical health concerns related to caregiving,¹²  such as hypertension, and struggle with societal expectations of their gender role and relationship.³⁶  They also tend to experience strong fear of the future.³⁶  Female MS caregivers often express a need for more emotional support even as research shows that they receive more social support than their male counterparts.^8,35 

Caregivers living in rural areas (approximately 12% of adult caregivers²⁵ ) or areas of low geographic density face additional challenges in providing care. Rural caregivers report a higher number of hours spent caring per week and have greater difficulty accessing affordable support services, such as home health aides, meal delivery, and transportation, than do nonrural caregivers.²⁵  A 2014 survey of rural caregivers of veterans with MS reported social isolation and increased time burden when attending medical appointments.³⁷ 

As a result of their geographic distance from medical facilities and difficulty accessing support services, the caregiving tasks of rural caregivers may also differ from those living in more urban areas: Rural caregivers help more with medical/nursing tasks.²⁵  These differing caregiving roles may also mean that rural caregivers have different support needs, such as requiring higher levels of medical education.

Race and ethnicity also play a role in the caregiving experience. White caregivers experience the lowest levels of burden perhaps because Black and Hispanic caregivers assist with more medical/nursing tasks, provide more hours of informal care, and are more often the sole caregiver.²⁵  Hispanic and Black caregivers also report having a lower household income than White or Asian American caregivers.²⁵ 

The US health care system lacks equitable access to high-quality health care, largely because of the structural racism that impacts US health care policy. Its policy structures put non-White populations at a disadvantage by providing health care coverage that is largely income-dependent.³⁸  As a result, health care spending is lowest for non-White individuals, who are also less likely to make use of ambulatory care and more likely to utilize inpatient and emergency care than White individuals, suggesting unequal access to primary care.³⁹  There is also an alarming lack of data on indigenous (Native American) caregivers, who experience a significantly higher mortality rate than other minority ethnic groups for a number of reasons.⁴⁰ 

People with MS and caregivers who are members of the LGBTQIA+ community also face distinct care-related challenges. Based on information collected by the Services and Advocacy for LGBTQ+ Elders (SAGE) organization, LGBTQIA+ adults are less likely to have children and twice as likely to be single as non-LGBTQIA+ adults.⁴¹  They may also be estranged from their biological family due to a lack of acceptance of their sexual orientation and/or gender identity. In the absence of a family or spousal caregiver, LGBTQIA+ individuals have a long history of forming “families of choice,” support networks that may include life partners, close friends, and other loved ones who may not be biologically related or legally recognized as informal caregivers.⁵  Without legal recognition, service providers may not acknowledge families of choice when working with patients.⁵ 

LGBTQIA+ adults are also less likely to access medical and social services than non-LGBTQIA+ adults,⁵  which can lead to delays in care, premature institutionalization, and even premature death.⁵  This lack of access to services is likely transferred onto the caregiver in the form of increased care needs.

The socioeconomic status of caregivers must also be considered alongside demographic factors when developing interventions to reduce caregiver burden. Financial costs associated with caregiving are a significant factor in caregiver burden, even when controlling for most caregiver demographic factors, such as gender, and the demographics, health, and caregiving needs of the care recipient.⁴²  Predictably, lower income is associated with higher MS caregiver burden and lower caregiver health-related QOL.⁴³ 

Due to the lack of representation of these diverse groups in caregiving research, we have little information on the operation of caregiving networks, the caregiving experience of individuals who do not have a spouse or life partner, and the experience of other demographics often underrepresented in research. HCPs and researchers must also consider the intersectionality of these caregiver and patient demographics. For example, LGBTQIA+ caregivers are more often racially and ethnically diverse with lower financial status than non-LGBTQIA+ caregivers.⁴⁴  Caregivers who belong to multiple underrepresented demographics are likely to experience exponentially higher burden as a result, and these factors should be considered and discussed when tailoring interventions to reduce caregiver burden and observed health disparities.

BE and MW: As we have been on this MS journey for some time, aging has become a challenge from a caregiving perspective. Brian has experienced considerable physical burden from trying to move and assist Mark, such as wheelchair transfers or lifting Mark out of swimming pools. Brian has even sustained physical injuries while doing some of these tasks and has required treatment. Consequently, it is essential that we both maintain our health and physical strength so that Brian can perform his caregiving duties as safely as possible. Unfortunately, if Brian is injured, that can present additional challenges, as arrangements must be made to provide for Mark's care while Brian recovers. By leveraging all available resources such as HCPs, social workers, friends, and family, we continue to do the best we can in managing Mark's MS as we age.

As members of the LGBTQIA+ community, we have had mixed experiences with HCPs. We have had to find providers who are willing to meet us where we are. Mutual respect in our journey is important to us. We have experienced cases of mistaken identity, such as when a doctor mistook Brian for the van driver from the nursing home that was bringing Mark to a medical appointment. We have had to explain our relationship and Brian's role as a caregiver on several occasions. HCPs can take simple actions to improve the experience of LGBTQIA+ caregivers and care recipients, such as placing signage in the office to reassure staff and visitors that the provider offers an inclusive environment, and that all people will be treated with respect regardless of their role.

To ensure our relationship and wishes are recognized and respected, we have worked with legal counsel to put together legal documents that outline our wishes and choices in life and after. We always carry these documents with us when traveling, as we never know when our relationship will be called into question.

Descriptions of caregiving tasks in the literature are often vague and generalized. As a result, there are gaps in knowledge about the types of caregiving performed, especially regarding tasks that may contribute to caregiver burden. A systematic scoping analysis of 16 studies reporting information about caregiver tasks found that, in general, responses were collected from caregivers as yes/no answers to a list of predetermined tasks.²⁴  Across all studies, only 13 different tasks were identified.²⁴  Without fully documenting and understanding the many tasks performed by caregivers, how these tasks change over time, and which tasks are most burdensome, it is impossible to develop tailored and successful interventions to reduce caregiver burden.

Respite Care. Respite care is the only way to relieve a caregiver's objective burden and, consequently, allow them to reduce their subjective burden. Respite care allows caregivers to instead invest time and money into self-care activities such as exercise or socializing with friends. Although some respite care may be covered by medical insurance, it may be difficult to access due to limited resources and waiting lists.⁵  Respite care options independent of medical insurance may include private-pay care, an adult day program, a part-time home health aide, or visits from trusted friends and family.⁵ 

Financial Support. Financial aid in the form of grants or tax credits can begin to reduce the cost burden of providing unpaid care, but resources are limited. Available financial support varies by state and there are currently no federal programs in place. However, the Credit for Caring Act was reintroduced in the House in 2025 and, if passed, would provide up to $5000 in federal tax credit per year to unpaid family caregivers.⁴⁵ 

Interventions providing educational support to MS caregivers have been shown to improve health literacy and self-efficacy, helping them cope with situational challenges and improving their depression, anxiety, and stress scores.^46,47 

MS caregivers require social support, including the ability to speak with somebody outside of their care relationship and HCPs.⁴⁸  Social support reduces caregiver burnout,⁴⁹  whereas a lack of support is associated with poorer caregiver mental health, independent of patient health status and disease severity.⁵⁰ 

Support groups for caregivers may be run by faith institutions, medical centers, disease associations, adult day centers, social service agencies, or by businesses for their employees, among other entities. Online social support may also be valuable. A 2021 systematic review investigating the effectiveness of online peer-support interventions for caregivers of several chronic conditions, including MS, found that caregivers who connect online experience”] significant positive changes in knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness, and perceived support.⁵¹  Online social support may be particularly useful for young adult caregivers who are more likely to use online/social media sources or smartphones to manage caregiving tasks and seek out informational and social support.²⁵  However, access to technology must be considered when designing technical support interventions. For example, rural caregivers may have limited access to these technologies due to internet access and smartphone availability.⁵² 

Programs that aim to improve psychological traits, such as resilience, optimism, and a sense of purpose, can help caregivers and care recipients cope with the burden of care and chronic illness.^53,54 

MS caregivers reported feeling empowered and ready to care for individuals with MS after resilience-based intervention programs that provided positive adaptation strategies to help face caregiving challenges. Their levels of anxiety and depression decreased, and their life satisfaction increased, both significantly.⁴⁶  Similarly, treatment programs that discuss the role of hope and its effect on one's life have been shown to increase the level of hope of MS caregivers as well as their overall QOL scores.⁴⁶ 

Cognitive therapy based on mindfulness and stress reduction has been shown to decrease MS caregiver anxiety, depression, and care burden scores. These programs provide training on facing obstacles and challenges, developing appropriate solutions, becoming aware of one's thoughts, and focusing on the present.⁴⁶ 

There is a paucity of research on interventions to support MS caregivers.²⁴  A 2023 systematic review found only 12 studies investigating the effectiveness of supportive interventions for caregivers of people with MS in the past 22 years.⁴⁶ 

Developing and testing new interventions for supporting MS caregivers is vital for the future of MS caregiving research. To develop effective interventions, caregiver input must be solicited to better understand specific caregiving tasks and how they contribute to caregiver burden. Caregivers’ input on how to make caregiving less burdensome should be included in the development of support programs. Collaborative projects such as the Comprehensive Online Caregiver Protocol, whose aim is to create an online caregiver resource that has been validated and refined by the larger MS caregiver community, serves as a good example of incorporating caregiver input into the development of support resources.⁵⁵ 

In particular, interventions that address the unique needs of LGBTQIA+, racially diverse, and young carers are urgently needed. Before this can be achieved, researchers must make a concerted effort to include these diverse caregiving groups in studies so that their unique needs may be better identified.

BE and MW: In our own home, we use several strategies to reduce both objective and subjective burden. We have worked to create some consistency and peace of mind through establishing a daily routine, while always keeping an open mind about new and improved ways to get things done. We both realized early on that the unpredictable nature of MS could quickly create a state of chaos. We have found that establishing as much of a daily routine as possible helps us to manage and better meet our expectations of daily life. To help us feel more comfortable and reduce stress, we have invested time and thought into preparing a plan for dealing with unforeseen circumstances. As previously mentioned, we worked with legal resources to draft the required documentation outlining our wishes and choices in life and after, and we have also hired a financial adviser to help us plan for our future.

Knowing that MS is a progressive disease, we recognize the importance of slowing the progression by using disease-modifying therapies (DMTs), implementing lifestyle changes, and navigating the health care system to identify the best clinical resources that work for us, so that we may have the least burdensome experience possible. We started preparing for this journey many years ago by engaging with medical education resources and continuing to remain hopeful that we will have the best experience possible. However, while staying hopeful and optimistic is helpful, we must also stay grounded and realistic about our journey. We have taken a “no regrets” approach in that we would rather have resources and equipment available and never use them than not have them available and wish that we did. We prioritize safety first in our home, and then the highest level of comfort we can afford. We also know that investing time in exercising and staying strong is a strategy that will mitigate stress and enhance safety for both of us. This is especially important when it comes to physically demanding tasks, such as moving Mark or helping him with wheelchair transfers. However, investing in these activities requires time and, as such, the opportunity for caregiver respite, in any form, is necessary and appreciated. For us, any moments, no matter how small, that allow us to step away from the roles of caregiver or care recipient can be rejuvenating and provide respite. This can be achieved through participating in a yoga class, playing in the kitchen, or working in the garden.

Engaging with our communities, including chosen family and related family, reduces subjective burden by adding value to our lives as we recognize the importance of being part of something greater than us. We have also established our own network of places to visit that are accommodating to our needs. For example, we frequent the local restaurants that have made handicap accommodations and we [try] to show our appreciation for improvements in accessibility.

Some of the most important communities to us are the health care community and health care organizations such as the National Multiple Sclerosis Society (NMSS). As Brian has served on the board of trustees for the NMSS for over 20 years, we have seen significant medical advances in DMTs. Each time a new DMT comes to market, it is a source of optimism, as we know that progress is being made. When we speak to people who have been newly diagnosed with MS, we reassure them that new DMTs will allow them to better manage their disease course and QOL. We are grateful to work with clinicians who are willing to meet us where we are and who invest in helping us build a more vibrant life. We remain grateful for that work and the services provided to us as consumers of health care in our MS journey.

Everyone's MS journey is different, just as every individual and every family has a variety of needs and wants. As frequent users of the health care system, we have developed long-term relationships with HCPs and, therefore, we look for HCPs who are willing to participate in our journey as trusted advisers and valuable resources. However, although much of HCP training is standardized, personality traits such as compassion, sensitivity, and cooperation are not always guaranteed. The US health care system still has a tremendous opportunity to enhance the lives of not only the patients, but also those people who support the patients, [by including] dedicated training on how to support caregivers. An individual provider can make a big difference in a patient's journey with MS and can have a tremendous impact on the caregiver community as well. There is a great deal of work to be done.

Although caregivers provide informal care to an estimated 80% of people with MS,⁶  it has been well established that caregiver burden can negatively impact caregivers’ physical and mental health.⁸  However, the full extent of the caregiving experience is still relatively unknown. Research to date has shown that supportive interventions can greatly improve the caregiver experience, but substantial research on their effectiveness is still lacking.

The diverse experiences of caregivers and their impact on caregiver burden are also greatly important, and personal insights from caregiver and patient authors, like Brian and Mark, should have a place in research. As this review focuses on the experience of US-based caregivers and patients, it may not be generalizable outside of the US. Because the last census on caregiver demographics and characteristics in the US was conducted in 2020, updated census data would assist in the understanding of the caregiver experience and how their unmet needs may be changing. Similarly, the impact of the evolving treatment landscape on caregiver burden, such as increased availability of high-efficacy therapies, has not been evaluated and should be a focus of future research. Our caregiver and patient authors acknowledge that their experiences in MS are unique, even as similarities with other MS dyads may be evident. Studies soliciting caregiver input, with consideration given to the diversity of MS caregivers and their experiences, and the inclusion of caregivers in shared decision-making approaches to MS management are needed to improve caregiver and patient experiences for people with MS.

Medical writing support, including preparation of the first draft based on author guidance and revising of drafts based on author feedback, was provided by Frankie Sorrell, PhD, of Envision Pharma, Inc, and was funded by Novartis Pharmaceuticals Corporation. This manuscript was developed in accordance with the International Society for Medical Publication Professionals Good Publication Practice guidelines. The contents of this article have not been previously presented elsewhere.