Multiple sclerosis, aging and support service utilization

Journal of Rehabilitation,  Oct-Dec, 2007  by Michelle Putnam,  Fengyan Tang

• E-mail
• Print
• Link

There are approximately 400,000 individuals with multiple sclerosis (MS) living in the United States and approximately 2,500,000 persons with MS around the world (National Multiple Sclerosis Society, 2004). These individuals are part of the population of people aging with a disability. Aging with a disability is the process of growing older with a long-term physical or mental impairment acquired in childhood, as a young adult or in middle age. This process is different than aging into disability, which occurs when individuals acquire and experience sustained impairment and disability for the first time in old age. The life expectancy of persons with MS is increasing globally with variations in length of life related to age of onset, progression of disease, and timing of disability (Bergamaschi, Montomoli, Candeloro, Fratti, Citterio, & Cosi, 2005; Pekmezovic, Iaberbinski, Drulovic, Stojsavljevic, & Levie, 2002), gender (Ekestem & Lebhart, 2004), and presence of other diseases, accidents, and suicide (BronnumHansen, Koch-Henriksen, & Stenager, 2004). This increased life span often includes expansive periods of impairment and disability that significantly influence the life experiences of individuals and their families. Although clinical research has identified successful pharmaceutical treatment for MS symptoms and slowing of disease progression (Weiner, 2004), it is not clear if MS has post-onset or age-related syndromes found in other neurological conditions such as poliomyelitis (Perry, 2004), muscular dystrophy (Klingbeil, Baer & Wilson, 2004), or spinal cord injury (Bauman & Waters, 2004).

While treating MS and discovering its etiology continues to be a pressing issue in biomedical research (Weiner, 2004), of specific interest to clinicians, program administrators, and policymakers is the issue of how to support the aging needs of individuals with degenerating forms of MS, an area with limited investigation (Stem, 2005). The lack of evidence-based knowledge in this area has resulted in limited guidance for interventions such as independent living or long-term care. Given this, the purpose of this paper is to strengthen the evidence in this area by investigating how people with MS currently support their independent living needs. More specifically, in the absence of a theory or model of long-term support use coupled with limited empirical research in this area, the aim of this study was to strengthen the knowledge base in this area by assessing current informal and formal support utilization by individuals with MS. In addition, the implications for practice, programs, and policies are discussed in relation to aging with MS. Specific research questions addressed in this study are: a) To what extent do persons with MS use informal and formal support services? and b) What personal and disability related characteristics are most associated with individual utilization of support services?

Relevant Literature

Support service use

Support utilization in the area if MS consists primarily of informal support such as family care giving and formal community support such as nursing homes. In the area of informal support, challenges associated with family caregiving in the lives of persons with MS have gained attention. Specifically, a review if MS caregiver literature over the period of 1990-2002 detailed adverse consequences related to caregiving, predominately caregiver spouses, including reduced physical and mental health, decreased economic well-being, and limitations in social engagement and social support (McKeown, Porter-Armstrong & Baxter, 2003). While community supports to assist in caregiving have been identified (Cruise & Lee, 2005; Donohoe, Wineman & O'Brien, 1996; Frankel, 1984; McLaughlin, 1998), most MS caregiving is informal with limited use of community services (McKeown, Porter-Armstrong & Baxter, 2003; O'Hara, de Souza & Ide, 2004). In fact, utilization of these supports is considered to be a matter of chance (Freeman & Thompson, 2000). The few published studies on actual formal service use are from the decade prior, but indicate low utilization of formal services (Aronson, Cleghorn & Goldenberg, 1996) until caregiving burden becomes too high for family members to provide adequate or appropriate assistance (Winslow & O'Brien, 1992). Persons with MS do comprise a small proportion of nursing home residents (Buchanan, Wang, Huang & Graber, 2001); however provision of appropriate specialty services is believed to be rare (Buchanan & Lewis, 1997). Continuing issues in aging-related MS care include coordination of services across acute and community settings (Nodder, et al., 2000), lack of professional knowledge of specific MS-related issues and needs (Kroll & Neri, 2003), unmet service needs (Kersten et. al., 2000), and access barriers (Hardiman et. al., 2003; Van Teijlingen, Friend, & Kamal, 2001).

Research regarding how the person with MS perceives the experience of aging may shed light on ways to improve support service utilization and policy making. Finlayson, Van Denend and Hudson (2004) find that persons aging with MS perceived distinctions between their experience of aging and those of persons aging without disability, such as the need for more assistance at an earlier age, substantial restriction in mobility with resultant limitations in social and community engagement, and not "fitting in" to the existing home and community based service system. These effects of aging with disability are noted to be compounded by decreasing economic resources related to the costs of living with MS (McCabe & DeJudicibus, 2003), employment barriers including inflexible work roles and job tasks and prodding by families to exit the labor force (O'Day, 1998). Finlayson (2004) also identified three main concerns that persons aging with MS have about the future. These include a) continued loss of mobility and independence, b) becoming a burden to family and professional care providers, and c) moving to a skilled nursing facility which results in both financial burden and lost independence.