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:

• Home
• Adult day programs
• Assisted living and other supportive housing options
• Nursing homes

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.

• Home Care Providers and Personal Care Assistants (.pdf)
• Serving Individuals with MS in Adult Day Programs (.pdf)
• Assisted Living for Individuals with Multiple Sclerosis (.pdf)
• Nursing Home Care of Individuals with Multiple Sclerosis(.pdf)

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.