Journal of Neuroscience Nursing:
Then & Now
Assessment of Caregiver Burden in Families of Persons with Multiple Sclerosis
Questions or comments about this article may be directed to Marijean Buhse, PhD RN NP‐C, at firstname.lastname@example.org. She is a clinical associate professor in the School of Nursing at the State University of New York at Stony Brook, Stony Brook, NY.
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.
A caregiver has been defined as an unpaid person who helps with the physical care or coping with the disease (Hileman, Lackey, & Hassanien, 1992). It is most often a family member, such as a partner or parent. More than 50 million people provide care for a chronically ill, disabled, or aged family member or friend during any given year (U.S. Department of Health and Human Services, 1999). The estimated economic value of the services provided by unpaid family caregivers is approximately $306 billion a year. By comparison, half that amount (approximately $158 billion) is actually spent on home care and nursing home services combined (Arno, 2006).
Caregivers provide the majority of care for people who need help with activities of daily living, such as bathing, eating, and taking medications, as well as managing household finances (Pandya, 2005). Sixty percent of caregivers are women, and 65% of care recipients are also women. The typical caregiver is 48 years old and cares for a woman in her family. Most caregivers live in close proximity to the person for whom they provide care, and 25% of caregivers report living in the same household as the care recipient. However, more than half of care recipients live in their own homes, and about 25% live alone. Seventy‐nine percent of care recipients are 50 years of age or older and require care because of old age and diseases such as cancer, diabetes, heart disease, and Alzheimer disease (National Family Caregivers Association, n.d.; Pandya).
Caregiving takes an economic toll on families. Women who are family caregivers are 2.5 times more likely than noncaregivers to live in poverty and are 5 times more likely to receive Supplemental Security Income (Donato & Wakabayashi, 2005). Families with one disabled member have median incomes 15% lower than families without a disabled member (Wang, 2000). In every state, the poverty rate is higher among families of people with a disability (Arno, 2006). Out‐of‐pocket medical expenses for a family with a disabled member who needs help with activities of daily living are more than 2.5% greater than for a family without a disabled member (Altman, Cooper, & Cunningham, 1999). In 2000, the average family caregiver who worked lost $109 per day in wages and health benefits because of the need to provide full‐time care at home (Stucki & Mulvey, 2000).
Economic hardship is not the only concern for caregivers. Elderly caregivers are often coping with their own chronic illnesses. The added stress related to caregiving has been reported to increase their mortality rate by 63% compared to their noncaregiving peers (Schulz & Beach, 1999). The stress of giving care to family members with dementia has been shown to affect the caregiver's immune system. The effect can last for up to 3 years after the care ends, putting the caregiver at an increased risk of developing a chronic illness, such as depression or heart disease (Kiecolt‐Glaser et al., 1987). Family caregivers who provide care for 36 or more hours per week are more likely than noncaregivers to experience symptoms of depression or anxiety. For spouses, the rate is 6 times higher; for those caring for a parent, the rate is 2 times higher than for noncaregivers (Cannuscio et al., 2002). Lastly, family caregivers experiencing extreme stress from caregiving have been shown to age prematurely. The high level of stress can decrease a family caregiver's life expectancy by 10 years (Arno, 2006).
Caregiving affects the workplace because family caregivers comprise 13% of the workforce (Wagner & Neal, 2001). Of family caregivers who care for someone over the age of 18 years, 59% either work or have worked while providing care, and more than half have had to make some adjustments to their work life, from reporting late to work to giving up work entirely (Pandya, 2005). To accommodate caregiving responsibilities, more than 50% of male and female children of aging parents make changes at work, modify their schedules, and alter work‐related travel. American businesses lose as much as $34 billion each year because of employees' need to care for loved ones 50 years of age and older (Metlife Mature Market Institute and National Alliance for Caregiving, 2006). As the population ages, caring for elderly family members will become the norm for many families, increasing caregiver burden.
Caregiver burden has been defined as the type of stress or strain that caregivers experience related to the problems and challenges they face as a result of the status of the care recipient. It is the state resulting from necessary caring tasks or restrictions that cause discomfort for the caregiver (Zarit, Reever, & Bach‐Peterson, 1980). Caregiver burden has also been defined as the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member (Stucki & Mulvey, 2000). It is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience. Caregiver burden has been described as both observable and perceived. Objective burden is an observable, concrete, and tangible cost to the caregiver for taking care of the recipient. Subjective burden refers to the perceived costs, such as the extent to which the caregiver is bothered by performing these tasks and the positive or negative feelings experienced while giving care (Jones, 1996). The caregiver's perception of the burden, rather than the perception of other family members or healthcare providers, determines the impact on his or her life (Kasuya, Polgar‐Bailey, & Takeuchi, 2000). The level of perceived burden has been correlated with higher risks of depression and lower quality of life for caregivers of MS patients (Aronson, 1997).
The unpredictability of MS affects the caregiver in a way unlike other chronic diseases. Caregivers are unable to predict the onset of a relapse, the progression of the disease, or even the functional ability of the patient over the course of a day (McKeown et al., 2004). Not only do physical symptoms of the patient increase caregiver burden, but the psychological and emotional aspects of MS also present challenges for patients and family members (Coleman, Rath, & Carey, 2001); many patients can be emotionally labile and may be depressed because of the symptoms. The care recipient's problems with everyday memory and activities of daily living have been shown to be predict caregiver burden (Chipchase & Lincoln, 2001).
Caregiver burden can be increased when the caregiver believes that the personality of the person with MS has changed. Changing personal plans or finances because of caregiving are other factors contributing to the burden (Chipchase & Lincoln, 2001). Eighty percent of MS caregivers reported that the demands placed on their time interfered with obligations to family and friends or with their career (O'Brien, 1993). The perceived burden may reflect feelings of conflict and loss because of changing roles within the relationship (O'Brien, Wineman, & Nelson, 1995). The amount of care provided is not necessarily related to caregiver burden. Limited participation in usual activities or interests that results from caregiving has been reported to increase emotional distress among caregivers (Cameron, Franche, Cheung, & Stewart, 2002).
Caregiver burden is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience.
Profound fatigue, sensory symptoms, and vision loss are common among MS patients. The most difficult invisible symptom for the caregiver to understand is fatigue. MS‐related fatigue is very different from regular fatigue because it generally occurs daily and can occur in the morning despite a good night's sleep. It can worsen during the day and is likely to interfere with normal activities (National MS Society, n.d.). The invisible and unpredictable nature of fatigue can make it difficult for the caregiver to understand and appreciate its intensity.
For spousal caregivers, a sense of loss permeates their lives. The constant change in disease progression and associated cognitive dysfunction of the MS patient contributes to the sense of loss. Spouses feel that they have lost their partner and their sense of self, companionship, support, income, and lifestyle (Cheung & Hocking, 2004). Courts, Newton, and McNeal (2005) found differences in the feelings of caregivers of MS patients occurred by gender. Men were angry at systems, such as difficulties with handicapped parking and the accessibility of aisles in stores for their wheelchair‐bound wives. Women shared their pain and spoke of emotional needs. Still, both genders admitted that they suffered in silence. The need for information about the disease and support from families, outside agencies, and healthcare providers was expressed.
Caring for the individual with MS causes unique challenges for the caregiver. Because MS develops in young adulthood, the initial impact can begin during the years of college education, marriage, career development, and family life. It is often diagnosed when married partners are assuming social and economic responsibilities (O'Brien, 1993). As the individual's disease progresses and the disabilities become more permanent, the person's need for personal aid increases (Kersten et al., 2000). Many individuals rely upon some level of assistance from their partner to remain active and involved in their home. If a partner is responsible for personal care of the patient, the partner's risk of burden increases. Neglect of the patient can become an issue if the partner is expected to remain employed, care for the children, and maintain the household (Holland & Northrup, 2006). The chronic, progressive, and unpredictable nature of MS may result in long‐term demands and increased caregiver burden. Caregivers need support for themselves, and they want support for their partners. They often feel overwhelmed, ignored, and neglected, and this adds to their feeling of burden (Courts et al., 2005).
Assessment of Caregiver Burden
Caregivers have been described as hidden patients (Andolsek et al., 1988) and often bear an enormous emotional burden for their work. Although many enjoy a profound sense of privilege and derive deep satisfaction in this role, sadness, guilt, anger, resentment, and a sense of inadequacy are also common reactions (Rabow, Hauser, & Adams, 2004). Financial strain, disease uncertainty, disrupted usual activities, and continuous caregiving contribute to significant mental health illnesses, including anxiety and depression. A number of studies document that as many as half of all caregivers experience clinical depression, with 61% of intense family caregivers (those providing at least 21 hours of care per week) experiencing depression (Haley, LaMonde, Han, Narramore, & Schonwetter, 2001; Pochard et al., 2001; Rabow et al.). Wives who are caregivers seem to be more likely to experience depression than caregiver husbands (Cannuscio et al., 2002). Because of the hidden nature of emotional strain of caring for individuals with MS, assessing caregiver burden in families of patients with MS is of primary importance.
Early recognition of caregiver burden by healthcare providers is important in determining appropriate interventions. The risk and degree of caregiver burden can be assessed by interview and formally developed tools. Listening to the patient and caregiver and noticing changes in behavior of the caregiver can help identify those who are under significant burden or at risk for burden (Kasuya et al., 2000). One example of a brief and reliable instrument for assessing caregiver burden is the Burden Interview (Zarit et al., 1980). The Burden Interview consists of a 21‐item Likert‐type scale questionnaire, which takes about 10 minutes to complete, and measures the extent to which the caregivers perceive their emotional, physical, social, and financial status as a result of caring for the patient. Although the tool was not developed to be used in a clinical situation, it does give the provider a good idea of the extent of burden for a caregiver (Fig 1).
Assessment of caregiver burden should begin by asking the patient's permission for the provider to speak to the caregiver. To make sure the caregiver feels comfortable enough to answer honestly, the discussion should be private, without the patient in attendance. Ask questions to detect the areas that concern the caregiver the most. Simple, nonjudgmental questions are best, such as, “What is your biggest concern about caring for your spouse?” and “Is there one thing that is the most difficult for you to do when caring for your spouse?” Caregivers may not initially talk about the financial issues that result from missed workdays and added expenses, so it is important to ask about them. Also, inquire about the social support network of the caregiver, such as family and friends, because social isolation has been associated with increased burden. Monitor caregivers for signs and symptoms of depression. Ask whether the caregiver has any physical or emotional limitations that might affect his or her ability to perform caregiving duties because caregivers may neglect their own physical health to provide for their loved ones (Kasuya et al., 2000). Finally, find out what the caregiver does to relieve stress and tension to determine their coping strategies.
One of the most common themes in studies of caregiver burden in MS is the caregiver's lack of knowledge (Courts et al., 2005; Gulick, 1996). Caregivers need the knowledge and skills pertinent to the care they are providing their loved ones. By educating the caregivers about managing common symptoms, relapses, medication use and side‐effect management, upcoming research, proper techniques, and resources available, nurses can help caregivers enhance the care they provide and increase their feelings of competence and satisfaction (Kasuya et al., 2000). See Figure 2 for informational resources.
Caregivers are at risk for developing stress because of their caregiving responsibilities. They may need support and assistance in providing physical care and become increasingly stressed without it (O'Brien, 1993). Nurses must be attentive to signs of increasing stress and should ask questions such as, “Do you feel that you are currently under a lot of stress?” and “What is the most stressful for you?” Helping the caregiver cope with increasing stress is essential to his or her health. Strategies for helping a caregiver alleviate stress are found in Figure 3.
Remind caregivers of the importance of respite and caring for themselves. The most common reason cited for being unable to continue caring for a person with MS is failing health of the caregiver (Wollin, Reiher, Spencer, Madl, & Nutter, 1999). Avoiding social isolation is also important because isolation increases depression and caregiver burden (Braitwaite, 1996). Participating in support groups, seeing friends, renewing church ties, or pursuing hobbies can give caregivers respite and a sense of social support.
Finally, it is important for caregivers to maintain an identity outside the caregiver role to avert the conflict and loss over changing roles between the caregiver and the partner. Discuss with caregivers how to monitor their own well‐being and teach them the warning signs of burden, which include increased sadness or depression, changes in sleep patterns, increased or decreased appetite, excessive worry and anxiety, and increased use of alcohol or prescription medications (Kasuya et al., 2000).
MS is a highly unpredictable disease that causes uncertainty in the caregiver and partner (O'Brien, Wineman, & Nelson, 1995). The unpredictable nature of the disease, the “invisible” symptoms, and the physical and cognitive disability all increase caregiver burden. Nurses are in a unique position to assist caregivers to share their feelings, foster realistic perceptions, and promote adjustment to the changing disease, thus reducing burden. Assessing the caregiver for burden will help nurses to better understand the needs and capacities of the family, enable family members to remain in their caregiving role longer, and ensure optimal outcomes for the patient.
Altman, B., Cooper, P., & Cunningham, P. (1999). The case of disability in the family: Impact on health care utilization and expenditures for non-disabled members. Milbank Quarterly
Andolsek, K., Clapp-Channing, N., Gehlbach, S., Moore, I., Proffitt, V., Sigmon, A., et al. (1988). Caregiving in elderly relatives: The prevalence of caregiving in a family practice. Archives of Internal Medicine, 148
Arno, P. S. (2006, January). Economic value of informal caregiving.
Paper presented at the Care Coordination and the Caregiving Forum of the Department of Veterans Affairs Employee Education System and the Office of Care Coordination, Bethesda, MD. Retrieved January 11, 2007, from http://www.thefamilycaregiver.org
Aronson, K. (1997). Quality of life among persons with multiple sclerosis and their caregivers. Neurology, 48
Berlex Laboratories (2006). Betaseron (interferon beta-1b) [Package insert]. Montiville, NJ: Author.
Biogen Idec. (2006). Avonex (interferon beta-1a) [Package insert]. Cambridge, MA: Author.
Braitwaite, V. (1996). Understanding stress in informal caregiving. Research in Aging, 18
Cameron, J., Franche, R., Cheung, M., & Stewart, M. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94
Cannuscio, C., Jones, C., Kawachi, I., Colditz, G., Berkman, L., & Rimm, E. (2002). Reverberation of family illness: A longitudinal assessment of informal caregiver and mental health status in the nurses' health study. American Journal of Public Health
Cheung, J., & Hocking, P. (2004). The experience of spousal carers of people with multiple sclerosis. Qualitative Health Research, 14
Chipchase, S., & Lincoln, N. (2001). Factors associated with carer strain in carers of people with multiple sclerosis. Disability and Rehabilitation, 23
Coleman, J., Rath, L., & Carey, J. (2001). Multiple sclerosis and the role of the MS nurse consultant. Australian Nursing Journal, 9,
Courts, N., Newton, A., & McNeal, L.(2005). Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing, 37
Donato, K., & Wakabayashi, C. (2005). Women caregivers more likely to face poverty.
Presented at American Sociological Association, San Francisco. Retrieved January 10, 2007, from http://www.media.rice.edu
Elan Corporation, & Biogen Idec. (2006). Tysabri (natalizumab) [Package insert]. Dublin, Ireland, and Cambridge, MA: Authors.
Gulick, E. (1996). Coping among spouses or significant others of persons with multiple sclerosis. Nursing Research, 44
Haley, W., LaMonde, L., Han, B., Narramore, S., & Schonwetter, R. (2001). Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hospital Journal, 15,
Hileman, J., Lackey, N., & Hassanien, R. (1992). Identifying the needs of home caregivers of patients with cancer. Oncology Nursing Forum, 19
Holland, N., & Northrup, D. (2006). Young adults with multiple sclerosis: Management in the home. Home Health Care Management and Practice, 18
Jones, S. (1996). The association between objective and subjective caregiver burden. Archives of Psychiatric Nursing
Kasuya, R., Polgar-Bailey, P., & Takeuchi, R. (2000). Caregiver burden and burnout: A guide for primary care physicians. Postgraduate Medicine, 108
Kersten, P., McLellan, D., Cross-Paju, K., Grigoriadis, N., Bencivenga, R., Beneton, C., et al. (2000). A questionnaire assessment of unmet needs for rehabilitation services and resources for people with multiple sclerosis: Results of a pilot study in five European countries. Clinical Rehabilitation, 14,
Kiecolt-Glaser, K., Glaser, R., Shuttleworth, E., Dyer, C., Ogrocki, P., & Speicher, C. (1987). Chronic stress and immunity in family caregivers of Alzheimer's disease victims. Psychosomatic Medicine, 49,
MacAllister, W., Belman, A., Milazzo, M., Weisbrot, D., Christodoulou, C., & Scherl, W. (2005). Cognitive functioning in children and adolescents with multiple sclerosis. Neurology, 64
McKeown, L., Porter-Armstrong, A., & Baxter, G. (2004). Caregivers of people with multiple sclerosis: Experiences of support. Multiple Sclerosis, 10,
Metlife Mature Market Institute and National Alliance for Caregiving (2006, July). MetLife Caregiving Cost Study: Productivity losses to U.S. business
(2006). Retrieved January 14, 2007, from http://www.caregiving.org
National MS Society. (n.d.) National MS Society Sourcebook.
Retrieved January 10, 2007, from http://www.nationalmssociety.org
O'Brien, M. (1993). Multiple sclerosis: Stressors and coping strategies in spousal caregivers. Journal of Community Health Nursing
O'Brien, R., Wineman, N., & Nelson, N. (1995). Correlates of the caregiving process in multiple sclerosis. Scholarly Inquiry for Nursing Practice, 9
Pandya, S. (2005, April). Caregiving in the United States
. Retrieved January 10, 2007, from http://www.aarp.org
Pochard, F., Azoulay, E., Chevret, S., Lemaire, F., Hubert, P., Canoui, P., et al. (2001). Symptoms of anxiety and depression in family members of intensive care unit patients: Ethical hypothesis regarding decision-making capacity. Critical Care Medicine, 29,
Rabow, M., Hauser, J., & Adams, J. (2004). Supporting family caregivers at the end of life: “They don't know what they don't know.” Journal of the American Medical Association
Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282,
Serono, Inc. (2006). Rebif (interferon beta-1a) [Package insert]. Rockland, MA: Author.
Stucki, B. R., & Mulvey, J. (2000). Can aging baby boomers avoid the nursing home? Long-term care insurance for aging in place
(p. 15). Wasington, DC: American Council of Life Insurers.
Teva Neuroscience, Inc. (2006). Copaxone (glatiramer acetate) [Package insert]. Kansas City, MO: Author.
Wagner, D., & Neal, M. (2001). Working caregivers: Issues, challenges and opportunities for the aging network (NFCSP Issue Brief.
Washington, DC: National Family Caregiver Support Program.
Wang, Q. (2005). Disability and American Families: 2000, Census 2000 Special Reports
. Retrieved January 10, 2007, from http://www.census.gov
Wollin, J., Reiher, C., Spencer, N., Madl, R., & Nutter, H. (1999). Caregiver burden: Meeting the needs of people who support the person with multiple sclerosis. International Journal of MS Care, 1
Zarit, S., Reever, K., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20
© 2008 American Association of Neuroscience Nurses