The Informal Carers Who Help People with MS Need Support More Than Ever
By: Rand Corporation
Tags: Multiple Sclerosis, United Kingdom, Caregivers, Long Term Care, Healthcare Workforce

Receiving a diagnosis of multiple sclerosis (MS) is a life-changing experience, not just for the person with MS but also for their carer and wider network of family, friends, or colleagues. This chronic, progressive disease of the central nervous system is usually diagnosed before the age of 40 and presents with symptoms such as decreased coordination and mobility, chronic pain, changes in cognition and speech, and extreme fatigue. As the disease progresses, people with MS struggle with declining cognitive abilities and reduced mobility, which increases their need for informal care, a service generally provided by families.

Thus, MS is a shared experience between the person with MS and their carers but lived in different ways. A study by RAND Europe showed that taking on the role of a carer leads to a shift in the relationship with the person with MS and may impact the carer’s other social relationships. And though people with MS are likely to have access to medical support, there is a lack of support available to deal with the burden on caregivers.

The caregiving burden, such as increased stress and a negative impact on mental well-being, has been accentuated by the COVID-19 pandemic. Attempts to curb COVID-19 have led to countries being under lockdown, with strict emphasis on self-isolation and social distancing. Although there is no evidence that individuals with MS (with some exceptions) are at higher risk of contracting the virus or having worse outcomes, people with MS and their carers may have chosen to take extra precautions, limiting interactions to a minimum.

The caregiving burden, such as increased stress and a negative impact on mental well-being, has been accentuated by the COVID-19 pandemic.

In addition, COVID-19 infection prevention and control measures have seen a restriction in access to health care and physical exercise, which could potentially lead to the worsening of motor and non-motor symptoms for people with MS. In a study in Italy, disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure, and on carer stress.

Multiple initiatives were set up to support individuals with chronic conditions worldwide during the pandemic, and MS is no exception. For example, a programme of video exercises with diary functions and chat sections has been used to deliver routine MS physiotherapy. Similarly, organisations such as the MS Society provide online physiotherapy three days a week for individuals with MS. People experiencing a relapse of MS were also able to find ways to manage their condition through telephone or video consultations.

This increased focus on self-management, the need to self-isolate, and reduced in-person interactions has meant that carers have had to take on a role of primary care physician and physiotherapist, in addition to that of partner, child, or parent. Evidence from the UK suggests that up to one-in-five working carers of someone with a long-term condition, including MS, lost or left their job (PDF) as a result of their increased caring responsibilities during the pandemic. Interruptions to usual psychological support during the COVID-19 pandemic have been associated with psychological consequences to both individuals with MS and their carers who have been compensating for the lack of social interaction, resulting in care overburden.

Although the pandemic showed the world the importance of caregiving as people took on increased informal caregiving responsibilities, caregivers are still too often invisible. The value of informal carers may go unrecognised as they are often unseen and undertake a role that is not characterised by a salary or title, or defined by specific duties. However, health care systems such as in the United States are somewhat reliant on informal carers whose aid occasionally substitutes for long-term care and hospital stays.

The trend towards remote care and self-management within health care services for people with MS has not included adequate support to carers. Carers provided essential care and alleviated the strain on health and social care systems before and during the COVID-19 pandemic, and perhaps in a post-pandemic world carers will be included in health care initiatives, recognised for their contribution, and made increasingly visible. Greater investment to support the needs of carers for people with MS could support the informal care they provide, as well as the carer as an individual.

Daniela Rodriguez-Rincon and Brandi Leach are both senior analysts in the area of health, research and innovation policy at RAND Europe.