An IJMSC Spotlight On Caregivers, Individuals With Multiple Sclerosis, and Abuse

Existing data connect disability and the prevalence of abuse.

• From New Zealand: “Those with any disability reported significantly higher rates of most forms of intimate partner violence than those without disabilities, among both genders, including physical intimate partner violence…and psychological and economic abuse.”¹
• From Australia: “Our gender‐specific estimates indicate that both men and women with disabilities have at least a 2‐fold increase in the odds of physical violence and sexual violence compared to their same‐sex nondisabled peers.”²
• From England and Wales: “[P]eople aged 16 and over with 1 or more disabilities including mental illness had relative odds of 3.0 (2.3-3.8) and those with 1 or more disabilities excluding mental illness had relative odds of 1.8 (1.5-2.2) of being a victim of past-year violence compared with the non-disabled….”³
• From the United States: “[W]omen with a disability were significantly more likely to report experiencing each form of [intimate partner violence] measured, which includes rape, sexual violence other than rape, physical violence, stalking, psychological aggression, and control of reproductive or sexual health.”⁴

And, data specific to the risk for individuals with MS also exist.

• From Iran: Of 275 married women with MS, 53.1% reported psychological, 33.6% physical, and 20.4% sexual violence.⁵
• From the United States: “Over [one-]third of women with MS (35% in the retrospective cohort and 38% in the prospective cohort) had experienced some form of abuse throughout their lives, and 15% to 17% reported [experiencing] abuse within the preceding year.”⁶
• And from the United States again: “[M]ore than 50% of participants with MS in this pilot study disclosed—in the presence of their caregivers—that they had survived various forms of abuse or neglect.”⁷

As an author of the latter US-based study, Elizabeth Morrison-Banks, MD, MSEd, said, “We expected mistreatment to be prevalent, but this level of prevalence can seem overwhelming….”⁸

What is behind these sobering statistics?

Caregiving Crisis

According to National Public Radio (NPR), 106 million Americans provide unpaid care for another adult.⁹ “Nearly all older adults (ie, Medicare recipients) in settings other than nursing homes had at least 1 potential informal care network member (family or household member or close friend), and the average number of network members was 4.”¹⁰ A majority of these caregivers are also employed in wage-earning work, 61% according to AARP, who also found that, on average, the hours spent providing care were equivalent to a part-time job.¹¹ An AARP estimate found that they contributed approximately $600 billion to the US economy without receiving a paycheck and often without societal acknowledgment, essentially making caregivers invisible workers. Caregivers report feeling lonely, overwhelmed, and unsupported. Estimates put the rate of depression among caregivers between 40% and 70%12 and the rate of loneliness at nearly 50%.⁹

As Suzanne Britt, MSc, BMedSci, BA, RM, who is currently pursuing a PhD at the University of Nottingham on the response of MS clinicians to abuse, says, domestic abuse exists at the “intersections with social status, wealth, financial status, [and] work status.”¹³ And caregivers are certainly at those intersections as well.

MS and Abuse

Individuals with MS and their caregivers face a slightly different situation than caregivers of older adults or those with other disabilities. According to the review by McGinley et al, MS is usually diagnosed in young adults between the ages of 20 and 30, is more common in women, and slightly lowers life expectancy (to 75.9 years).¹⁴ As an unpredictable disease with a variable course, care needs can change quickly. As a degenerative disease, the younger age of onset means that individuals can begin to need care earlier in their lives and will require more long-term care. Both characteristics contribute to the complexity of caregiving.

Significantly, a longitudinal, expert, all data (LEAD) panel validating the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) found that individuals who spent 20 or more hours per week caregiving were more likely to abuse the care recipient.⁷ The National Multiple Sclerosis Society (NMSS) estimates that MS care partners provide 24 hours of care a week, putting them above this threshold.¹⁵

The following data are stark as well. The NMSS also found that 64% of care partners are emotionally drained, 32% are depressed, and 22% have lost a job due to the requirement of caregiving.¹⁵ These types of stressors all seem to be indicators of the potential for abuse to occur. Hillman found that caregivers who had lost their jobs often found caregiving “incomprehensible.”¹⁶ She also cites that many caregivers thought they could benefit from counseling, but most did not seek this out, often due to concerns about copays or insurance coverage.16 Another study found that of their cohort of MS care partners (mostly spouses with an average age of 59), “[M]ore than half had at least one health condition, and approximately 58% had mood disorders.”¹⁷ Data from a North American Research Committee on Multiple Sclerosis (NARCOMS) survey showed that “Caregivers with mental illness were 13 times more likely to be abusive or neglectful.”¹⁸ Finally, 40% of a cohort of MS caregivers in a study from Mexico “met the criteria for probable major depressive disorder.”¹⁹

A major fear is that abuse in MS is underreported. The recent paper “MeTooMS” reported: “A complete lack of diagnostic coding of suspected or confirmed abuse in our patients over up to 4 years of health care encounters throughout the health system, was surprising, especially considering our study findings. We suspect that other medical documentation and diagnostic coding take precedence in an acute or ambulatory health care setting. These results suggest under-documenting of abuse cases by health care professionals and underscore significant difficulty in reliance on medical diagnostic claims to understand the true prevalence of abuse and neglect in the general population and in specific disease states.”6 This leads to the belief that “epidemiologic studies using health claims data may not be adequate to assess [the] true prevalence.”⁶

All the data seem to point to a perfect confluence of factors that warn of the great possibility of abuse in MS caregiving.

What Can Clinicians Do

Ask

Although there is the possibility that people with MS will not disclose abuse “because of shame, feeling they deserve mistreatment, or fearing loss of the caregiver,”²⁰ many of the studies cited in this article show that some are willing to disclose mistreatment: “More than 50% of participants with MS in this pilot study disclosed—in the presence of their caregivers—that they had survived various forms of abuse or neglect”⁷ (emphasis author’s). However, the opposite has also been found: “Despite participants having been identified as recipients or perpetrators of mistreatment, all denied any form of abuse in the focus group setting.”²⁰

Perhaps most surprising, caregivers also are willing to disclose abuse. Morrison-Banks says of her STRESS-MS research: “[My colleagues and I] were amazed, humbled actually, by how willing many of the caregivers in the study were to actually tell us that they were abusing or neglecting their person with MS and it made me think [that] maybe the stigma isn’t preventing those individuals as much as…I might have guessed before we did this work. People were more willing to talk about these issues than…I or my colleagues had expected. So the question is, how can we help health professionals…to be able to have these open, honest conversations? Maybe we don’t need to be so afraid of bringing up the issue…[It may be] a relief that, thank God, someone asked about this, and ‘Now I can talk about it.’”⁸

One possible solution to reluctance is to take a multidisciplinary approach. If the entire MS care team is aware of the possibility of abuse in MS caregiving, it is not solely the responsibility of just 1 team member to address the issue or to offer solutions. Britt commented, “There’s a lot of support for practitioners in [a] multidisciplinary approach. It’s not feeling that you’re isolated with an issue. [It’s the feeling] that you have a team, that you can have those informal conversations about somebody and [also] more formal conversations [with a team member].…The practitioners that I’ve spoken to get a lot of comfort, if you like, from being able to have those conversations with other people in a supportive environment [where] people are able to raise their concerns and not have them diminished.”⁸

Inform and Refer

Sometimes it may just help to be frank: knowing that abuse may affect 50% of people with MS means it is not an individual problem. Referring patients and caregivers to support groups at all stages of the disease course should be a part of the treatment plan. The NMSS, the Multiple Sclerosis Association of America, AARP, and many hospital and health care systems offer a variety of programs and groups to support individuals and their care partners. Practitioners should be aware of these resources and refer to them. There are also nonprofit organizations, such as the Caregiver Action Network. Along with other services, this “DC-based organization…staffs a hotline for caregivers who need all kinds of help—including emotional support. The group started the hotline because, despite their numbers, there was no dedicated information portal to help them find resources and help.”⁹

The Future

With the rising prevalence of MS and “as national health and welfare systems struggle to cope with the socioeconomic costs generated by the rise in chronic diseases, informal caregivers continue to make up the shortfall, becoming, in the process, both ‘professionals’ in disease management and ‘hidden patients.’”¹⁷ As Dawn Shedrick, caregiver of 30 years to her mother with multiple sclerosis (MS), shared, “I’m not here because my mother is sick. I’m here because our system is not designed to offer all the [necessary] care for chronically ill, disabled people.”⁹

Not only will abuse never recede unless addressed, but also, its reach extends beyond the disease, beyond the individual, beyond the dyad. Britt said, “[A]buse is so important because it has such a fundamental effect on people’s brain health, people’s physical health, children’s physical health, [and] children’s brain health over the long term.”⁸

The data paint a clear, troubling picture. Abuse in MS may be more prevalent than previously thought and there may be no good institutional way to capture the data to quantify it. Reliance on personal relationships, conversations, communication skills, knowledge of resources, willingness to address the issue, and support from the care team are all tools that will help clinicians address this life-threatening health issue that leaves their patients with MS, particularly vulnerable and affects their care partners, family, and friends. Acknowledging the long-term issues that arise in caregiving and offering resources will bring this invisible problem into the light of truly holistic patient care.

REFERENCES
1. Fanslow JL, Malihi ZA, Hashemi L, Gulliver PJ, McIntosh TKD. Lifetime prevalence of intimate partner violence and disability: results from a population-based study in New Zealand. Am J Prev Med. 2021;61(3):320-328. doi:10.1016/j.amepre.2021.02.022
2. Krnjacki L, Emerson E, Llewellyn G, Kavanagh AM. Prevalence and risk of violence against people with and without disabilities: findings from an Australian population-based study. Aust N Z J Public Health. 2016;40(1):16-21. doi:10.1111/1753-6405.12498
3. Khalifeh H, Howard LM, Osborn D, Moran P, Johnson S. Violence against people with disability in England and Wales: findings from a national cross-sectional survey. PLoS ONE. 2013;8(2):e55952. doi:10.1371/journal.pone.0055952
4. Breiding MJ, Armour BS. The association between disability and intimate partner violence in the United States. Ann Epidemiol. 2015;25(6):455-457. doi:10.1016/j.annepidem.2015.03.017
5. Manouchehri E, Ghavami V, Larki M, et al. Domestic violence experienced by women with multiple sclerosis: a study from the North-East of Iran. BMC Women’s Health. 2022; 22(321). doi:10.1186/s12905-022-01905-9
6. Pol-Patil J, Glanz B, Safar L, et al. MeTooMS: sexual, physical, and emotional abuse experience among women with multiple sclerosis. Mult Scler. 2023;29(2):287-294. doi:10.1177/13524585221122169
7. Morrison EH, Sorkin D, Mosqueda L, Ayutyanont N. Validity and reliability of the Scale to Report Emotional Stress Signs-Multiple Sclerosis (STRESS-MS) in assessing abuse and neglect of adults with multiple sclerosis. Int J MS Care. 2022;24(1):18-24. doi:10.7224/1537-2073.2020-016
8. Gyomber E. “Multiple sclerosis and abuse, part 2: a conversation with Elizabeth Morrison-Banks and Suzanne Britt.” NeurologyLive. August 22, 2024. Accessed 10/31/2024. https://www.neurologylive.com/view/ijmsc-insights-ms-abuse-morrison-banks-britt-2
9. McGowan, K. Caregiving can be a tough, lonely mission. One daughter found ways to reconnect. NPR. October 31, 2024. Accessed October 31, 2024. https://www.npr.org/sections/shots-health-news/2024/10/31/nx-s1-5172517/caregiver-caregiving-isolation-burnout-resources
10. Freedman VA, Spillman BC. Disability and care needs among older Americans. Milbank Q. 2014;92(3):509-541. doi:10.1111/1468-0009.12076
11. Reinhard SC, Caldera S, Houser A, Choula RB. Valuing the invaluable 2023 update: strengthening supports for family caregivers. AARP Public Policy Institute. March 8, 2023. Accessed October 31, 2024. https://www.aarp.org/pri/topics/ltss/family-caregiving/valuing-the-invaluable-2015-update/
12. Zarit SH. Assessment of family caregivers: a research perspective. In Caregiver Assessment: Voices and Views from the Field, Vol II. Family Caregiver Alliance. April 2006. Accessed October 31, 2024. https://www.caregiver.org/uploads/legacy/pdfs/v2_consensus.pdf#page=20
13. Gyomber E. “Multiple sclerosis and abuse, part 1: a conversation with Elizabeth Morrison-Banks and Suzanne Britt.” NeurologyLive. August 19, 2024. Accessed 10/31/2024. https://www.neurologylive.com/view/ijmsc-insights-ms-abuse-morrison-banks-britt-1
14. McGinley MP, Goldschmidt CH, Rae-Grant AD. Diagnosis and treatment of multiple sclerosis: a review. JAMA. 2021;325(8):765-779. doi:10.1001/jama.2020.26858
15. National Multiple Sclerosis Society. Supporting family caregivers. Accessed November 4, 2024. https://www.nationalmssociety.org/how-you-can-help/get-involved/advocate/advocacy-issues/caregiver-support
16. Hillman L. Caregiving in multiple sclerosis. Phys Med Rehabil Clin N Am. 2013;24(4):619-627. doi:10.1016/j.pmr.2013.06.007
17. Ponzio M, Tacchino A, Verri A, Battaglia MA, Brichetto G, Podda J. Profile and burden of the family caregiver: the caring experience in multiple sclerosis. An observational study. BMC Psychol. 2024;12(1):173. doi:10.1186/s40359-024-01678-w
18. Morrison EH, Sorkin D, Mosqueda L, Ayutyanont N. Abuse and neglect of people with multiple sclerosis: a survey with the North American Research Committee on Multiple Sclerosis (NARCOMS). Mult Scler Relat Disord. 2020;46:102530. doi:10.1016/j.msard.2020.102530
19. Lehan T, Arango-Lasprilla JC, Macias MÁ, Aguayo A, Villaseñor T. Distress associated with patients’ symptoms and depression in a sample of Mexican caregivers of individuals with MS. Rehabil Psychol. 2012;57(4):301-307. doi:10.1037/a0030764
20. Shapiro J, Wiglesworth A, Morrison EH. Views on disclosing mistreatment: a focus group study of differences between people with MS and their caregivers. Mult Scler Relat Disord. 2013;2(2):96-102. doi:10.1016/j.msard.2012.09.006