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Overview

More than 50% of people with MS require some form of assistance with daily activities (Minden et al., 2006), most of which is provided by informal caregivers (Buchanan et al., 2009, 2010). When these needs exceed the resources of the family, long-term support services are necessary. These services take place across a wide range of settings:

And are critical to the quality of life and quality of care that a person with MS experiences.

Providers working within this continuum of care who are serving people with MS are faced with a challenging population whose needs are quite different from the frail elder whom they typically serve.

  • People with MS are generally younger, have more physical disability, struggle with more depression, are more cognitively intact (Buchanan et al., 2003), and have stronger links to the community.
  • Many still have a working spouse and/or minor children in their life.
  • Most have experienced the loss of their health, mobility, employment, place in their community, and traditional role within their families. They are sad, fearful, and frustrated.
  • Most will need long-term support services for many years…a unique and challenging population to serve.

Guidelines

The National MS Society, in partnership with provider membership organizations, has developed four guideline documents to provide clinical information, practical tips and best practices to those who are serving people with MS across the continuum of care. The goal is to enhance and expand quality, age-appropriate and comprehensive long-term support services for people with MS.

Working with caregivers

In addition to identifying ways to enhance care for people with MS, providers must be mindful of the needs of caregivers. Buchanan et al. (2009) found that more than 80% of these informal caregivers are spouses; these caregivers have provided care for an average of 13.2 years; and almost half of them provide more than 20 hours per week of care. A comprehensive, interdisciplinary approach to care can help patients and caregivers manage the symptoms that interfere with functional independence and are associated with an increased risk of nursing home placement.

Palliative care

Palliative care is a multi-disciplinary approach to healthcare, encompassing the physical, emotional, social, and spiritual care of people with serious illnesses. Palliative care is provided by a team of doctors, nurses, and other specialists who work to provide an extra layer of support for the patient and the patient's family. The goal of palliative care is to provide the best possible quality of life for people facing the pain, symptoms and stresses of serious illness, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. It is appropriate at any age and at any stage of an illness, and can be provided along with treatments that are meant to cure.

For people living with multiple sclerosis (MS), the journey from diagnosis to end-of-life may range from a nearly normal life expectancy with death from cancer or heart disease to a more progressive disease course with increased disability and severe and debilitating symptomatology. Due to the unpredictability of MS, it is imperative to help patients plan for possible outcomes in ways that enhance quality of life and foster independence and self-actualization for as long as possible. Healthcare professionals are encouraged to explore and discuss (.pdf) palliative care options and strategies throughout the disease course in order to avoid the pitfalls of last-minute or nonexistent plans of care.

Additional resources

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