Long-Term Care in the Home for People With Multiple Sclerosis by ProQuest


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                                                                                People with MS in need of LTC services represent a popula-
                                                                            tion with a different “face” than the more typical person in need
                                                                            of LTC. They are generally younger and more physically disabled
Long-Term Care in the                                                       than elderly people with similar care needs. What distinguishes
                                                                            people with functional disabilities like MS is that they are usually
Home for People With                                                        capable of directing much of their own care (Holland & Northrop,
                                                                            2006, p. 187).

Multiple Sclerosis                                                              Studies have shown that people with MS who at the time were
                                                                            residing in LTC facilities were more likely than other facility resi-
                                                                            dents to

Marion Brandis, MA, RN, BSN, MSCN                                              •   Be 50 years old or younger at admission (>31% vs. 7.5%),
Rachael Stacom, MSN, ANP, MSCN                                                 •   Be cognitively intact at admission,
                                                                               •   Be significantly more dependent in ADLs,
                                                                               •   Be depressed at admission (36%),
                                                                               •   Have limitations in range of motion and loss of voluntary

          ultiple sclerosis (MS) is a chronic, demyelinating, often
          disabling disease of the central nervous system that                     movement,
          can lead to the manifestation of a range of symptoms.                •   Rely on a wheelchair for transportation,
About 20% to 25% of people with MS will need long-term care                    •   At greater risk for falling,
(LTC) at some point during the course of their illness (Buchanan,              •   Be bowel or bladder incontinent,
Wang, & Ju, 2002, p. 512). According to the official Web site for               •   Have all stages of pressure ulcers and skin desensitized to pain-
Medicare:                                                                          pressure,
                                                                               •   Be female (70.3% vs. 62.4%), and
                                                                               •   To have lived with a partner prior to admission (Buchanan
   Long-term care is a variety of services that includes medical and non-          et al., 2002; Holland & Northrop, 2006).
   medical care to people who have a chronic illness or disability. . . .
   Most long-term care is to assist people with support services such as
   activities of daily living like dressing, bathing, and using the bath-   In a study of 180 MS patients, severe bowel dysfunction and
   room. Long-term care can be provided at home, in the community,          absence of a primary partner were associated with permanent LTC
   in assisted living or in nursing homes. (Centers for Medicare & Med-     facility residency (Carton, Loos, Pacolet, Versieck, & Vlietinck,
   icaid Services, n.d.)                                                    2000, pp. 278–279).

Historically, LTC services have been provided in residential insti-                                    WHAT IS MS?
tutions by professionals and paraprofessionals; for those who
                                                                            Disease Patterns
chose to remain at home, informal care was primarily provided
by their family (Palsbo, Mastal, & O’Donnell, 2006; Schwab,                 The disease course of MS is variable, and the constellation of symp-
Kwan-Moon, Gelb, Meng, & Cohn, 2003). Recently, LTC                         toms can vary from person to person (see Figure 1). Approximately
services have been expanded to encompass multiple care set-                 85% of people diagnosed with MS will begin with a relapsing–
tings with a variety of caregivers. Home- and community-based               remitting course (first box in Figure 1). This includes acute episodes
services can be more flexible than nursing home care or other                of disease activity that last from 24 hours to several months. Symp-
institutionally provided care in meeting the needs of the MS                toms may resolve completely between exacerbations, although
LTC population (Schwab et al., 2003). Comprehensive home-                   accumulation of disability is more likely to occur as the duration
based services provided by an interdisciplinary clinical team can           of disease increases. Of those diagnosed with relapsing–remitting
provide a cost-effective approach to managing people with MS                MS (RRMS), about 50% will become secondary progressive, with
(Pozzilli et al., 2002).                                                    90% doing so by 25 years from diagnosis (second box in Figure 1).
    For those with progressive forms of MS, there is a need for             Secondary progressive MS (SPMS) is defined by a steady decline
assistance with personal care and other daily activities. More than         in function; relapses may or may not be present. A small percent-
50% of the population observed in the Slifka Longitudinal MS                age will be diagnosed with primary progressive MS (PPMS), with
study needed help with personal care, and almost two-thirds                 a steadily progressive w
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