Aging With Multiple Sclerosis

Marcia Finlayson; Toni Van Denend; Elizabeth Hudson

Disclosures

J Neurosci Nurs. 2004;36(5) 

In This Article

Abstract and Introduction

Although multiple sclerosis (MS) does not typically reduce life expectancy, there has been relatively little systematic investigation of the experiences and health-related concerns of people aging with this disease. A current search of the database CINAHL produced no articles when the search terms "multiple sclerosis," "nursing" and "aging" were used. To initiate more dialogue about the role of nurses in addressing the issues and concerns of people aging with MS, a cross-sectional descriptive study was conducted using both qualitative interviews and the administration of standardized instruments to elicit information about the health concerns and service needs of 27 people with MS 55 years of age and older. Qualitatively, participants perceived that they had less freedom and required more assistance than same age peers who do not have MS. Scores from standardized instruments support these perceptions. Participants expressed unmet needs in the areas of housework, physical therapy, MS support groups, religious service attendance, information and referral, check-in services, assistive technology use, social activities, personal care, and care coordination. To address these perceptions and needs, neuroscience nurses need to be aware of and sensitive to the challenges of aging with MS. In addition, nurses must be prepared to discuss and provide information, resources, and referrals on a wide range of health, social, and wellness-related services.

Multiple sclerosis (MS) is a chronic, debilitating neurological disease typically diagnosed in individuals between the ages of 20 and 50 years (National Multiple Sclerosis Society [NMSS], 2002). Prevalence estimates range from 0.77 cases per 100,000 in Hong Kong (Lau et al., 2002) to 150 cases per 100,000 in northern Europe, northern United States, and Canada (Dean, 1994). In the United States, conservative estimates suggest that 400,000 people have MS, and 45% of these individuals are older than 55 years (Minden, Marder, Harrold, & Dor, 1993; NMSS, 2003).

MS is most common among women, Caucasians, and people who live above the 37th parallel (NMSS, 2003). The disease causes demyelination of the central nervous system and results in symptoms such as extreme fatigue, mobility impairment, optic neuritis, weakness or paralysis, abnormal/painful sensations, and loss of balance. Although these symptoms can result in considerable disability for the person with MS (Finlayson, Impey, Nicolle, & Edwards, 1998), overall life expectancy is not dramatically altered for these individuals (Weinshenker, 1995). Of those with MS, 85%-90% can expect to live as long as their age peers (Minden, Marder, Harrold, & Dor, 1993). Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control, 2001).

Together, this background suggests that the majority of individuals who are diagnosed with the disease are likely to live with it for at least 20 years (if diagnosed at age 50) and potentially as long as 55 years (if diagnosed at age 20). Subsequently, they are likely to have to cope with normal age-related changes in their life and health in addition to having to manage and adapt to disability related to MS and its progression. Despite these realities, relatively few researchers have systematically examined the health-related concerns of people who are growing older with MS. To date, only seven studies could be located that explicitly examined the topic of aging with MS, rather than of being diagnosed with MS at a later age (Dalmonte, Finlayson, & Helfrich, 2003; Finlayson, 2004; 2002; Finlayson & Van Denend, 2003; Fleming & Blake, 1994; Klewer, Pohlau, Nippert, Haas, & Kugler, 2001; Trojano et al., 2002).

Across these studies, older adults with MS have been found to have significant disabilities for both basic and instrumental activities of daily living (Finlayson, 2002; Klewer et al., 2001). Furthermore, Trojano et al. (2002) found that older individuals with MS had accelerated rates of disability progression compared to younger individuals with MS. In a study of hospital discharges, Fleming and Blake (1994) found that older adults with MS are more likely to have urinary tract infection, pneumonia, septicemia, and cellulitis as their discharge diagnoses and less likely to have heart attack or failure, angina, cerebrovascular disease, diabetes, or lung disease compared to their age- and sex-matched peers without MS.

While these studies are interesting and informative, qualitative work with people aging with MS provides additional insights into the lives of these people. In a series of studies, one group of researchers has found that people aging with MS are particularly concerned about continuing loss of their mobility (Finlayson, 2004; Finlayson & Van Denend, 2003), becoming a burden on family members (Dalmonte et al., 2003; Finlayson, 2004), and the possibility of having to move into a nursing home (Finlayson). To address these concerns, some individuals are able to make adjustments in their daily lives and the way they view their disabilities and to develop strategies to manage loss and change (Dalmonte et al., 2003).

Across this body of literature, little to no discussion has occurred about the role of nurses in addressing the issues and concerns of people aging with MS. In fact, a recent search of the CINAHL database using the terms "multiple sclerosis," "aging," and "nursing care" generated no articles, although the Klewer et al. (2001) article was published in the Journal of Neuroscience Nursing. This gap in the literature is striking, particularly given that nurses are actively involved in assessing and offering interventions related to symptom management, quality of life, and coping with disability and chronic illness for both older adults and persons with MS (Boyd, 2001; Feldt & Finch, 2002; Frazier & Fincke, 2002; Lisak, 2001; Shannon, 2001; Strumpf, 2000; Stuifbergen, Becker, Rogers, Timmerman, & Kullberg, 1999; Welburn, 2000).

To initiate more dialogue about the role of nurses in addressing the issues and concerns of people aging with MS, this study explored the following questions: How do people aging with MS perceive the differences between their experience of aging and the experiences of their peers without MS? What supports and services do people aging with MS use and need to help them manage these differences?

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