Progression to advanced multiple sclerosis (MS) comes with worsening symptoms, neurological dysfunction, and disability. Advanced MS can impact one’s ability to perform daily activities. Family members, caregivers, and friends can also be impacted by the physical and emotional weight of caring for a loved one with advanced MS.
MS is a chronic autoimmune disease that causes the immune system to mistakenly attack its own body’s cells. MS affects the central nervous system (CNS) (brain and spinal cord), attacking and destroying the protective myelin coating on the nerve cells (neurons) in a process called demyelination.
Although MS is manageable and treatable, there currently is no cure for the condition. Depending on which parts of the CNS are impacted and how severely, MS can lead to an array of neurological dysfunctions and physical disabilities.
MS commonly transitions from relapsing-remitting MS (RRMS) to secondary progressive MS (SPMS) over time. Some people are initially diagnosed with primary progressive MS (PPMS). Treatment of progressive MS is focused on slowing disease progression, reducing irreversible damage, and managing symptoms. Disease modifying therapies (DMTs) are generally the mainstay of an MS treatment plan. Sometimes, MS progresses in severity and disability despite several combinations of the most novel therapies, drugs, and lifestyle changes.
A person with advanced MS generally experiences significant physical impairment and changes to cognition. They have a higher likelihood of experiencing more MS symptoms, both simultaneously and chronically. Oftentimes, symptoms of advanced MS — such as bladder or bowel incontinence and muscle spasticity — don’t respond as well to traditional treatment. Thus, they’re more difficult to manage. The goals of health care treatment during advanced MS are to enhance comfort, avert crises and complications, and promote general function to the degree it is medically possible.
Many of the symptoms seen in advanced MS are similar to those seen during end-stage MS. Co-occurring conditions or life-threatening complications — such as respiratory infections, problems swallowing, or risk of sepsis from pressure sores — contribute more to a shorter life expectancy with MS than the disease itself does. Treatment during end-stage MS focuses more on maintaining a person's quality of life, dignity, and comfort as much as possible. More advanced disabilities present greater health challenges and physical limitations.
When a person has advanced MS, the treatment approach shifts to focusing on ensuring comfort instead of treating the disease manifestations directly.
Symptom management is important through all stages of MS. However, in cases of advanced MS, some or all of the symptoms can become quite severe or less responsive to traditional treatments. Limited mobility often brings with it additional symptoms and health complications, as well as a need for more involved, more specialized, or more consistent care.
Palliative care is specialized medical care for people living with a serious illness. Palliative care is designed to provide symptom relief, relieve pain and discomfort, and mitigate stress from the illness. The goal is to improve quality of life for the person with MS. Palliative care also helps the family of the person living with MS.
People with MS and their caregivers often will work with an entire consultation team, including the primary doctor and others who will provide medical, social, emotional, and practical support. Team members can include:
Places a person may receive palliative care include:
A common misconception is that palliative care is only for end-stage terminal illnesses, like hospice care. According to the National Institute on Aging, palliative care can be helpful at any stage of illness and is best provided from the point of diagnosis. Although some of the practices for palliative and end-of-life care may overlap — such as the use of stronger pain medications — palliative care can and should be provided together with other types of treatment.
Mood disorders, including clinical depression, are more common among people living with MS. At least half of all people with MS have a major depressive episode during the course of their disease. Untreated or undertreated depression is life-threatening. One study found that people with MS were 7.5 times more likely to attempt suicide than the general population. Another study found that the risk and severity of depression increased if a person with MS had a caregiver who felt sad or resentful about providing care.
Caring for a person with advanced MS can be complicated. The level of care and support a person with MS needs will change throughout the course of their disease. Evaluating and determining treatment options and the level of support a person needs is an informed decision to be made in close collaboration with one’s health care provider team and family.
A team can better ensure that your complex symptoms of advanced MS are well managed, that your wellness is ensured, and that complications are prevented. Your treatment team should comprise a number of different clinicians with varying specialties to meet your specific needs. This could include specialists in psychiatry and occupational therapy in addition to your neurologist.
Advanced MS calls for greater involvement of the caregiver — sometimes, round-the-clock care is required. In-home or residential care may be necessary. With a solid care team and you at the helm, there’s always more that can be done to improve your quality of life with MS.
In-home care is any service that provides additional support in your home. This can include nursing care and rehabilitation services. This can also include help with cooking or housekeeping.
Respite care provides the primary caregivers a break, or a respite, from their responsibilities caring for someone with advanced MS. Respite care can be scheduled regularly so that the caregiver can go out and do something for themselves, like taking a regular yoga class or attending a therapy appointment. Respite care can also be scheduled occasionally if the primary caregiver plans to be away for several days or weeks.
As the needs of a person with advanced MS increases, so too do the demands upon those who care for them. Sometimes spouses, children, or other family members ignore their personal health and their need for emotional support, relaxation, and social activities outside the home.
It is critical that caregivers pay as much attention to their own well-being as they do the needs of the person they’re caring for. Otherwise, they may experience a buildup of resentment and overwhelming stress. By not taking care of themselves, caregivers can reduce both their quality of life and the quality of caregiving they provide. Finding ways to fit in relaxation, laughter, and time away from MS are equally important for the caregiver and the person with MS.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 167,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Do you have advanced MS? How did your level of care shift as your disease progressed? Are you considering in-home care or a nursing home? Tell us in a comment below, or join a conversation on MyMSTeam.