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Care for caregivers: the needs of family members of MS patients.

In the past ten years, there has been a growing appreciation of the role which family members play in providing care to their chronically ill relatives. Health and social science professionals, social science researchers and legislative policy makers are recognizing that family caregivers represent a tremendous resource and that without their dedication, a much greater percentage of chronically ill patients would require institutionalization.

Most research attention has been focused on caregivers of the elderly, particularly Alzheimer's patients. The demographic characteristics and experiences of the caregivers of persons with Alzheimer's disease have been extensively studied. Caregivers are generally thought to experience two types of burden (Poulshock & Deimling, 1984; Zeigler, 1987). One type is objective burden due to the patient's impairment, and the physical demands of caregiving. The second is subjective burden due to the impact of caregiving on the caregiver's lifestyle and the upset caused by these changes. When compared to non-caregivers, the caregivers of Alzheimer's patients report: (a) higher levels of depression and more negative effect toward their relatives; (b) lower levels of life satisfaction; (c) significant impairment in social activities and less satisfaction with their social network; and (d) poorer health, more medication use and greater utilization of health care services like physician visits and hospitalization (Haley, Levine, Brown, Berry & Hughes, 1987). Despite the impact of caregiving, Alzheimer's caregivers make relatively little use of community and government support services which might provide them with some relief (Castera, Lund, Wright & Redburn, 1987).

Caregivers to other patient groups have been less well described. There has been some reported investigation of the experiences of caregivers of the brain injured (Lezak, 1978; Zeigler, 1987) and of patients with chronic illnesses (Baines, 1984; Snyder & Keefe, 1985). These studies have documented the physical, emotional, and financial strains of family caregivers and have hinted at the lack of use of support services.

The purpose of the study outlined in this paper was to explore in greater detail the experiences and needs of caregivers of individuals with the chronic disease multiple sclerosis. Multiple sclerosis (MS) is the most common neurological illness among young North American adults. The disease often causes progressive disability; about 30 percent of patients require canes or a wheelchair to remain mobile, or eventually become bedridden (Matthews, 1985). An earlier study with this patient group (Warren, Cockerill, Paterson & Patterson, 1986) reported that family provided the majority of help with personal care, household chores and transportation; relatively little assistance was provided by friends, paid employees, volunteers and government agencies. That study did not examine the impact on the caregivers of providing support. The intent of the study reported here was to expand on this earlier research by examining the amount of time which family members devote to their MS relatives' care, the impact which providing such services has on the caregiver's lifestyle, and their use of respite services.


During 1986-87, a sample of multiple sclerosis patients and their primary caregivers were questioned about patient care needs and the caregiving experience. Patients were randomly selected from a membership list of the Multiple Sclerosis Society of Canada, Toronto Chapter. Data were collected by a mailed questionnaire, consisting of two parts. One part was to be completed by the patients, and the other by individuals whom they identified as their primary caregiver (i.e. "the individual who provided them with the most care and assistance"). For patients in health care facilities (nursing homes and chronic care institutions), primary caregiver was additionally defined to exclude paid employees.

In addition to some basic demographic data, patients were asked to describe their level of care needs. Level of care was measured by asking patients how much time (minutes per day) caregivers spent helping them with various activities of daily living. The 22 items in this scale were subdivided into three categories: personal care (e.g. dressing, bathing, transferring, eating); homemaking (e.g. cleaning, laundry); and communication and other activities (e.g. writing letters, keeping financial records, transportation, etc.).

Caregivers were also asked to provide some basic demographic data, and to rate their MS relatives' care needs on the same scale including amount of time required for delivery. In addition, they were asked to describe the impact which caregiving had on their own lifestyle and respite options which they had exercised.

Sixty-three percent of the 235 MS patients contacted returned the questionnaire. Forty-nine percent of them also identified a caregiver who completed the second part of the form, thus making that questionnaire usable for this study.

MS respondents to the questionnaire were similar in terms of basic characteristics to the MS Society's membership. The average age of MS patients was 59, and the majority (70%) were female. Eighty-two percent were living at home, while 18% were residents of support service projects, nursing homes and chronic care institutions. In terms of their current ambulatory status, 22% walked unaided, 16% walked with an aid, 55% used a wheelchair and 7% were non-ambulatory.

The average age of the caregivers was 48, and 52% were female. Ninety-six percent of caregivers were related to the MS patients, with the majority of them (66%) being spouses. Of caregivers whose relative was in a house or apartment, 81 % lived with the individual with MS and, of those not living with the individual, 78% lived within thirty minutes travelling time. Sixty eight percent saw the individual on a daily basis.


In general, the results of this study indicate that family members are an important source of care for disabled MS patients, regardless of whether the patient is at home or in an institution. Although the impact of caregiving on family-members who have a MS patient in the community can be considerable, little respite is sought.

Levels of Care: MS Patients at Home

Table 1 illustrates the frequency with which caregivers who have a MS relative living in the community (although not necessarily with them) provide various types of services.

Eighty-four percent of these caregivers reported that they were providing their relative with personal care on a daily basis and 35% spent 90 minutes or more on this function. Ninety-five percent of caregivers reported that they were helping with homemaking activities, with 60% performing such duties for 90 minutes or more each day. Finally, 78% of caregivers reported providing assistance with communication and other activities; of these, 22% were spending at least 90 minutes daily on such duties.

Interestingly, there was a consistent discrepancy between the perceptions of patients and caregivers on how much help was being provided. On all but one (bathing/washing) of the 22 dimensions of care measured, a smaller percentage of patients than caregivers reported that they always required assistance from their primary caregiver. These differences ranged from only a few percentage points to 13 for house cleaning. Such differences (displayed in Table 2) may indicate that MS patients underestimate the care they require or that caregivers overestimate the care their family member requires.

Levels of Care: MS Patients in an institution

MS patients living in institutions received most of their personal care and homemaking services from staff, as might be expected. However, it was largely the family who provided help with communication and other activities. For those requiring assistance with writing, 59% of that assistance was provided by family; for assistance with reading, 67% was provided by family; for banking and handling money matters, 79% of the assistance was from family; and for being accompanied when attending appointments or shopping, 56% relied on their families.

It was noted that only 25% of MS patients living in institutions were married, while 64% of patients living in houses and apartments were married. When the analysis was limited to comparing patients requiring similar levels of care, there was still a significantly higher percent of individuals who were not married in the institutions.

Impact of Caregiving

Many caregivers in this study indicated that their activities had been curtailed by caring for their MS relative. Table 3 shows activities which were affected and the percentage of caregivers reporting some level of curtailment. Perhaps not surprising, those activities which might require the family member to make alternative care arrangements (taking a holiday, attending social events, and participating in recreational activities) were most curtailed. The only area in which a majority of caregivers did not report curtailment was visiting with other family members.


Only 55% of home caregivers claimed that they had ever used any form of respite ("which of the following have you used to provide care and assistance to your family member with MS when you have temporarily not been available"). The respite options asked about were those available to the respondents in the study area and were: (a) admitting the patient to hospital; (b) hiring assistants; (c) using day care programs; and (d) calling on family and friends. Thirty-eight percent of caregivers had asked family and friends for help; 17% had admitted the patient to hospital temporarily; 11% had hired assistants, and no one had used a day care program. A space was left for respondents to write in other options they had used, and two respondents mentioned they had had a homemaker come to help them with household chores.

Discussion and Policy implications

Caregivers in this study were providing a great deal of support to their MS family members; in fact, in many cases, they appeared to be delaying the institutionalization of their relative. This support was apparently being provided at some cost to caregivers, in that their activities were being constrained by caregiving duties. Yet MS caregivers were not taking any great advantage of existing, available respite options. The findings of this study agree with Warren et al.'s (1986) earlier research, and with studies of caregivers to the impaired elderly.

Low utilization of respite services may mean that caregivers are not aware of the options available to them. Alternatively, they may feel free to leave the MS patient at home for short periods of time, do not wish to take breaks, or have unfavorable attitudes towards the options from which they have to choose. A supplementary question in this study asked family members how acceptable the four existing respite options were to them. The most popular option was to hire assistants (52% were favorable to this), with the use of family and friends only slightly less popular (50% said that this option was very acceptable to them). Respondents were not very favorable to admitting their family members to hospital (only 19% found this very acceptable) or using day care programs (again, only 19% found this very acceptable). Part of the unfavorable attitude towards these options may be guilt over wanting to take respite or asking for help; part may be due to dissatisfaction with the services themselves. The conclusion remains, though, that MS caregivers are not using available respite options, and appear to be resistant to using them.

Support for caregivers is currently an important concern of policy makers and social science and health professionals, since it appears vital to preventing institutionalization. Numerous researchers have concluded that if family members are to continue caring for ill relatives, then community and government support services must share the burden and help to reduce their strain and morbidity. Jones and Vetter (1984) have outlined some possible options; these include: (a) an increase in the number of community nurses or even nursing aides to help with personal care; (b) a similar increase in home helps that could ease the load of household tasks; (c) development of in-home respite programs which would permit caregivers to develop or maintain social contact and friendships; and (d) short stay facilities for disabled MS patients.

More attention needs to be paid to the reasons for underutilization of already existing services. Castera et al. (1987) found that many Alzheimer's caregivers were unaware of the services available or considered them inaccessible. It was common for caregivers to express frustration about sorting their way through a variety of available supports.

However, knowledge of available services does not always lead to use (Castera et al., 1987). Non-utilizers typically claim that they do not need any help, even when they are spending several hours per day caring for patients and have suffered curtailment of their own activities. The reasons for this attitude are not clear, although non-utilizers also often express dissatisfaction with the quality of help available.

This study indicates that MS caregivers are underutilizing available respite services; it also indicates that many caregivers are uncomfortable with the options available to them. Neither the reasons for underutilization nor discomfort with available services were within the scope of this study.

Information on why services are underutilized might help to plan programs aimed at increasing utilization. Additional information on the sources of discomfort over known services might suggest changes which would improve existing options or suggest new, more acceptable alternatives. In sum, while it is clear that respite is needed, what is also needed is a way to ensure family members know about these options and feel comfortable using them. It may be that options such as educational programs, support groups, or possibly even greater information through mechanisms such as newsletters are needed to educate the caregivers that they can, and should, receive some assistance with their caregiving duties. Providing a wider range of supports to the caregivers is a top priority, but with this must be concern that these are supports the caregivers want and will use.


Baines, E. (1984). Caregiver stress in the older adult. Journal of Community Health Nursing, 1, 257-263.

Castera, M. S., Lund, D. A., Wright, S. D., & Redburn, D. E. (1987). Caregivers of dementia patients: The utilization of community services. Gerontologist, 27, 209-214.

Haley, W. E., Levine, E. G., Brown, S. L., Berry, J. W., & Hughes, G. H. (1987). Psychological, social, and health consequences of caring for a relative with senile dementia. Journal of the American Geriatrics Society, 35,405-411.

Lezak, M. (1978). Living with the characterologically altered brain injured patient. Journal of Clinical Psychiatry, 39, 592-598.

Matthews, W. B. (1985). Some aspects of the natural history of multiple sclerosis. In W. B. Matthews, E. D. Acheson, J. R. Batchelor, & R. O. Well (Eds.), McAlpine's Multiple Sclerosis, (pp.73-95). Edinburgh: Churchill Livingstone.

Poulshock, S. W. & Deimling, G. T. (1984). Families caring for elders in residence: Issues in the measurement of burden. Journal of Gerontology, 39, 230-239.

Snyder, B., Keefe, K. (1985). The unmet needs of family caregivers for frail and disabled adults. Social Work in Health Care, 10, 1-14.

Warren, S., Cockerill, R., Paterson, M., & Patterson, 1. (1986). Planning support services for chronically sick in rural areas. Canadian Journal of Public Health, 77, 19-23.

Zeigler, E. A. (1987). Spouses of persons who are brain injured: overlooked victims. Journal of Rehabilitation, 53, 50-53.
 Table 1
Amount of Assistance Caregivers were Providing to MS Patients
 Living in the Community (Family Member's Perspective)
Amount of Personal Home- Communi
-Assistance Care making cation
Less than 90 minutes 49% 35% 56%
90 minutes-3 hours 9% 30% 12%
3-5 hours 12% 9% 0%
5 or more hours 14% 21% 10%
No care required 16% 5% 22%
 Table 2
Discrepancies between Caregiver and Patient Perceptions of
 Help Provided
 % indicating care or
 assistance "always" required
Activities MS individuals Members
Personal Care 24% 22%
 Bathing/washing 26% 28%
 Hair care 19% 26%
 Dressing 23% 30%
 Transfers 14% 17%
 Skin care 15% 22%
 Bowel care 15% 26%
 Bladder care 11% 18%
 Medications 10% 13%
 50% 55%
 Grocery shopping 43% 45%
 Personal shopping 28% 38%
 Meal preparation 44% 52%
 Laundry 47% *60%
 House cleaning
 17% 26%
 Writing 10% 15%
 Reading 6% 15%
 Telephone 6% 16%
 16% 24%
 Locking/unlocking doors 18% 24%
 Handling money 35% *46%
 Banking 42% 48%
 Accompanied on outings
Note: Analysis limited to MS patients resident in houses and
apartments, and their family members.
* p<.05
 Table 3
 Curtailment of Caregivers' Activities
 Degree of Curtailment
 A Great Not
Activities Deal Somewhat at All
Entertaining at home 15% 39% 46%
Taking holidays 28% 42% 30%
Attending social
 activities 21% 41% 38%
Participating in
 activities 20% 49% 31%
Visiting family 12% 27% 61%
COPYRIGHT 1990 National Rehabilitation Association
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1990, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

Article Details
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Title Annotation:multiple sclerosis
Author:Warren, Sharon
Publication:The Journal of Rehabilitation
Date:Jan 1, 1990
Previous Article:Another look at facial disfigurement.
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