Multiple sclerosis (MS) is one of the most common progressive neurological diseases in the world, particularly in the northern latitudes. In the United States, conservative estimates suggest that 400,000 people have MS (National Multiple Sclerosis Society, 2003b) and that approximately 45% of these individuals are over age 55 (Minden et al., 2004).

Although MS can result in considerable disability, it does not significantly reduce life expectancy unless the disability associated with the disease is severe (Miller et al., 1992; Weinshenker, 1995). Severe disability occurs in approximately 10% to 15% of all cases (Minden et al., 2004) and, therefore, the majority of people with MS can expect to live as long as their age peers. Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control and Prevention, 2001).

Together, these figures suggest that up to 90% of people who are diagnosed with MS in their early 20s are likely to live with the disease for 50 or more years. They will be faced with having to cope with normal age-related changes in their life and health, in addition to having to manage and adapt to MS-related disability. Physicians and other health care providers can play important roles in enabling people with MS to age well. This article will review basic background information about MS, identify and describe key issues facing people who are aging with this disease, and discuss the potential implications of these issues for health care professionals working with these individuals.

Although the cause of MS still remains unknown, it is currently believed that it is an autoimmune disease that has an environmental trigger, which is most likely an infectious agent (Compston and Coles, 2002; Joy and Johnston, 2001). The disease causes demyelination of the central nervous system, including axonal damage, and results in symptoms such as extreme fatigue, optic neuritis, weakness or paralysis, abnormal/painful sensations, loss of balance, spasticity, incontinence of bladder and bowel, and difficulty swallowing (Compston and Coles, 2002; Joy and Johnston, 2001). Activity limitations associated with these symptoms are wide-ranging and include difficulty with basic self-care tasks (e.g., dressing, grooming, bathing), mobility (e.g., walking, climbing stairs, driving), productive activities (e.g., work, household maintenance), and leisure and recreational participation (Finlayson et al., 1998).

Multiple forms of MS have been described in the literature (relapsing-remitting, secondary progressive, progressive-relapsing and primary progressive) (Lublin and Reingold, 1996). The relapsing-remitting form is the most common, with approximately 85% of all people initially diagnosed with this form (Joy and Johnston, 2001). It is characterized by acute attacks, full or partial recovery, and no progression between episodes. By 25 years after diagnosis, up to 90% of people diagnosed with relapsing-remitting MS will transition to the secondary progressive form of the disease, which is characterized by variable progression, with or without relapses, but without recovery between relapses (Joy and Johnston, 2001).

Until the mid-1990s, pharmacological treatment for MS was primarily limited to management of exacerbations through high-dose intravenous corticosteroids, as well as symptom-specific medications (e.g., baclofen [Lioresal] for spasticity). With the introduction of disease-modifying agents such as various interferon β-formulations (i.e., Avonex, Betaseron, Rebif), as well as glatiramer (Copaxone) and mitoxantrone (Novantrone), physicians are now able to offer pharmacological treatments to people with relapsing-remitting MS that reduce the number and severity of exacerbations and reduce development of brain lesions and future disability (National Multiple Sclerosis Society, 2003a). Mitoxantrone is also used for secondary progressive and progressive relapsing MS (Smedman, 2004). A number of drug trials are currently underway examining the use of other pharmaceuticals for the management of primary progressive MS. For a good overview of MS disease-modifying drugs, new trials and other treatment options, refer to the National Multiple Sclerosis Web site at <www.nmss.org>, under "Treatments."

Over the past several years, a number of articles have described the health and psychosocial characteristics of older adults with MS (DalMonte et al., 2003; Finlayson, 2004, 2002; Finlayson and Van Denend, 2003; Finlayson et al., 2003; Fleming and Blake, 1994; Klewer et al., 2001; Minden et al., 2004). It is beyond the scope of this paper to summarize these insights and describe how physicians can use this information to help their older patients with MS. Therefore, only two issues will be addressed here: loss of mobility and the need for assistance.

The majority of older adults with MS require some form of mobility device (Finlayson, 2002; Minden et al., 2004). Because of the variability of their symptoms, it is common for people with MS to have multiple mobility devices and to choose which one to use depending on how they feel and where they will be going (Finlayson, 2002; Finlayson and Van Denend, 2003). For example, while walking might be possible for many older adults with MS, occasionally using a wheelchair or scooter will minimize fatigue and prevent falls and exacerbation of other symptoms (Iezzoni, 1996; Packer et al., 1995).

Physicians cannot assume that one walking aid will serve all purposes or work in all contexts. It is important for physicians to ask about the different ambulatory needs of their older patients with MS, as well as about the types of environments in which they will be functioning. Referrals to physical and occupational therapy will increase the likelihood that appropriate devices are matched to the person and that the patient receives training on safe and proper device use.

Active rehabilitation for mobility and related issues are essential for people aging with MS. A number of studies have shown that rehabilitation therapies improve the functional and quality of life outcomes, even among individuals with a progressive form of the disease (Di Fabio et al., 1998, 1997; Freeman et al., 1999, 1997). Functional impairment should be assessed on a regular basis and patients referred for rehabilitation to maintain their abilities and develop new strategies to manage limitations and functional losses.

The mobility needs of older adults with MS may go beyond canes, walkers or wheelchairs. There are many other options to maximize community mobility, including using the local paratransit system, obtaining a disabled parking permit, having a driver assessment or modifying a vehicle for hand controls. The American Medical Association has resources about older driver safety <www.ama-assn.org/ama/pub/category/8925.html>, as does the American Occupational Therapy Association <www.aota.org/featured/area6/links/link02aq.asp>.

Like many other older adults, people with MS are concerned about becoming a burden on their caregivers, moving into an assisted-living residence or nursing home, or needing to obtain assistance to engage in everyday tasks, particularly if their disease continues to progress (Finlayson, 2004).

With MS, there is a tendency to think about the need for assistance as being primarily physical in nature, but this is not the only concern. In a qualitative study, Finlayson (2004) found that older adults with MS not only worried about becoming a physical burden on their caregivers, but they also worried about the psychological, emotional and financial impact that the progression of their disease might have on their families and friends. They expressed concerns about living as independently and actively as possible. In focus group interviews, similar issues were revealed, as well as expectations that physicians would know about community support services or, at minimum, refer them to agencies or professionals in the community (Finlayson et al., 2003).

The need for assistance and support needs to be broadly conceptualized, including services such as housing supports, financial advice, long-term care planning, leisure planning, recreation programs and support groups under the rubric of health-related services (Finlayson et al., 2003). Therefore, while it is important for physicians to connect patients to more traditional home care and rehabilitation services, it is also important to link them to these broader services as well. Having opportunities to engage in their communities and interact with others opens doors for people aging with MS to learn new or better coping strategies, maintain their mental well-being, and improve their quality of life (DalMonte et al., 2003).

For physicians who are unfamiliar with the programs and services available, the National Multiple Sclerosis Society is a good place to start. Chapters throughout the country have programs and services that offer a wide range of physical, social, psychological and emotional supports to promote the health and independence of people with MS. In addition, the organization also provides information and support to caregivers. For patients who need information about building and modifying their home for accessibility and to promote aging-in-place, resources such as the Center for Universal Design <www.design.ncsu.edu/cud/> are also valuable.

Until recently, little attention has been paid to the experiences and needs of people aging with MS. These patients share many of the same concerns as their peers: losing mobility, becoming a burden on family members and having to go to a nursing home. Research shows that older adults with MS and their caregivers expect physicians to connect them with community information and resources. Consequently, one of the easiest ways that physicians can help their older patients with MS is to become familiar with community resources and to make referrals that can help these patients achieve their health goals.

Dr. Finlayson is assistant professor of occupational therapy at the University of Illinois at Chicago. Her scholarship focuses on the patterns and predictors of the need for and use of health-related services among older adults, particularly people with MS.

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Helping Older Patients With Multiple Sclerosis