Assessment of Caregiver Burden in Families of Persons With Multiple Sclerosis

Marijean Buhse, PhD RN NP-C

Disclosures

J Neurosci Nurs. 2008;40(1):25-31. 

In This Article

Abstract and Introduction

Multiple sclerosis (MS) is a chronic, unpredictable, progressive, disabling disease. It is generally diagnosed in young adult females between the ages of 20 and 40 years. Symptoms of MS may include profound fatigue, depression, gait disorder, spasticity, blurred vision, and bladder and bowel problems. It is an unpredictable disease and has the potential to create a stressful family life. Because MS is frequently diagnosed in early adulthood, it may affect developmental experiences such as raising a family and building and sustaining a career. Satisfaction with relationships can also be altered. MS has a significant social, psychological, and physical impact on the affected individual as well as his or her family. Partners of people with MS often become caregivers, adding to the demands and challenges of family life. As the individual's disease progresses, the capacity for self-care may decrease, and the individual may require daily assistance from family members. However, the daily assistance that family members provide to a disabled spouse, parent, partner, or child can take a physical and economic toll on the caregiver, causing caregiver burden. Caregiver burden is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience. Caregivers who experience burden are more likely to have a higher risk of depression and a lower quality of life. Early recognition of caregiver burden is important in determining appropriate interventions.

Multiple sclerosis (MS) is a neurological illness affecting approximately 400,000 people in the United States (National MS Society, n.d.). It is an autoimmune disease of the central nervous system characterized by neuronal inflammation, demyelination, and axonal loss. MS is most commonly diagnosed between the ages of 20 and 40 years and is 2–3 times more prevalent in women than men. However, it has been diagnosed in children as young as 6 years old, and estimates place the number of children with MS in the United States at approximately 10,000 (MacAllister et al., 2005).

Nearly all MS patients (approximately 85%) are initially diagnosed with the relapsing-remitting course of the disease. Relapsing-remitting MS (RRMS) is characterized by periods of relapse and periods of stability. During relapse, symptoms may include difficulty seeing, extreme fatigue, gait problems, and sensory symptoms such as pain, dysesthesias, parasthesias, and bladder or bowel problems. As the disease progresses, other symptoms, such as cognitive dysfunction, depression, emotional lability, spasticity, and tremors, become more common. About half of the adult patients diagnosed with MS will have significant difficulty with ambulation and will require assistance within 15 years of diagnosis (National MS Society, n.d.).

In most MS patients, the disease progresses to secondary-progressive MS (SPMS), which is characterized by fewer relapses but increasing disability over time. Patients with SPMS have a slow functional decline with more permanent symptoms, increasing disability, and cognitive impairment. According to some natural history studies, of the 85% of MS patients who start with RRMS, more than 50% will develop SPMS within 10 years, and 90% will develop it within 25 years (National MS Society, n.d.).

Disease-modifying agents have been available in the United States since the early 1990s. These medications are generally prescribed for patients with RRMS; however, they can be useful for SPMS patients. They are available as either intravenous (IV) injections, such as natalizumab (Tysabri; Elan Corp. and Biogen Idec, Inc., 2006), or intramuscular injections, such as interferon beta-1a (Avonex; Biogen Idec Inc., 2006; Rebif; Serono, Inc., 2006), interferon beta-1b (Betaseron; Berlex Laboratories, 2006), and glatiramer acetate (Copaxone; Teva Neuroscience, Inc., 2006). These medications modify the natural course of the disease by decreasing relapses, lesions detectable by magnetic resonance imaging (MRI), and/or disability by 30%–60%. However, these treatments do not cure the disease and many patients experience exacerbations and disease progression (Holland & Northrup, 2006).

Because MS is a progressive and unpredictable disease, it can create a stressful family life. MS is frequently diagnosed in early adulthood, affecting developmental experiences, such as raising a family and building and sustaining a career. Satisfaction with relationships is also altered. As a result, MS has a significant social, psychological, and physical impact on the affected individual as well as on his or her family (McKeown, Porter-Armstrong, & Baxter, 2004). Partners of people with MS often become caregivers, adding to the demands and challenges of family life. As the individual's disability progresses, the role of the caregiver often becomes more burdensome. The life expectancy of an individual with MS is similar to that of someone without the disease, so the caregiver's role can encompass a lifetime.

Many patients have difficulty with activities of daily living. For example, walking becomes difficult, necessitating the use of a cane, walker, or wheelchair. Simple tasks, such as getting out of bed and getting dressed, are difficult and cause fatigue. Daily assistance with personal care may be necessary, and this assistance generally is provided by an unpaid caregiver such as a spouse, partner, or parent. The purpose of this article is to describe the MS caregiver and how the role of MS caregiver may contribute to burden, and to identify assessment tools and early interventions to reduce burden for the caregiver.

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