International Journal of MS Care
page 4, Volume 5, Issue 2
Judy Soderberg, MSW, LISW
Judy Soderberg, MSW, LISW, is Director of the Multiple Sclerosis Achievement Center, Fairview-University Medical Center, St. Paul, Minnesota.
The Fairview Multiple Sclerosis Achievement Center (MSAC) is a maintenance rehabilitation program for those significantly affected by multiple sclerosis (MS). The MSAC offers a program that marries maintenance, physical, and occupational therapies to therapeutic recreation, support groups, and social services for persons with severe MS. A strong emphasis is also placed on caregiver support, in recognition of the critical role these individuals play in the lives of persons with MS. In addressing the needs of the caregivers, the MSAC focuses on sharing information on MS, providing listening and respite services, and developing a more effective care system for persons with chronic diseases.
Suggested Citation:. Int J MS Care [serial on-line]. 2003;5(2).
The Fairview Multiple Sclerosis Achievement Center (MSAC) opened in 1985. A component of the Fairview MS Center, under the medical direction of Randall T. Schapiro, MD, the MSAC is a maintenance rehabilitation program for persons with severe multiple sclerosis (MS). The MSAC offers a daylong (10:30 AM to 3:20 PM) program that marries maintenance, physical, and occupational therapies to therapeutic recreation, chaplain-led support groups, and social work services designed for persons with severe MS. Members attend one day per week.
The MSAC works to achieve five goals:
A description of the caregivers for the people who attend the MSAC is
found in the table below. As reported by most studies on MS caregivers,
the age of the caregivers ranges from 18 through the late 70s, with the
average in the mid-50s.1,2 At the MSAC, the average age of caregivers is
58, with a range from 18 through 91. More than half work outside the home
as well as giving care. The average duration of caregiving among members
of the MSAC is 14 years. The literature reports this figure at around 10
|Spouse with outside paid help||26|
|Person living alone with outside paid help two to 14 hours/day||27|
|Person living in group home with paid staff||19|
|Person living with parent, or parent significantly involved||14|
|Person living with daughter/son, or daughter/son significantly involved||10|
|Person living alone (no help coming in, or help for less than two hours/week)||17|
|Person living with sibling, or sibling significantly involved||2|
|Person living in assisted living complex||8|
|Person with live-in nonrelative to assist with care||5|
Table: Caregivers for People Who Attend the Multiple Sclerosis Achievement Center
Tasks performed by caregivers vary by the patients’ symptoms and by what they cannot do for themselves because of their disease course. The most common caregiver tasks are:
According to self-reports provided at MSAC caregiver support group meetings, the most troublesome stressors for caregivers are:
In both the caregiving literature and the experience of the MSAC, the primary need of caregivers—be they family members or paid caregivers—is for information.3,4 Caregivers desire and require as much information as possible on MS and its various symptoms and how to manage them. Paid caregivers must have training on various aspects of MS, both physical and cognitive, that they may encounter in the workplace, as well as on safe ways to move people about and how to support psychosocial needs in a healthy way.
Issues of particular import are dealing with cognitive deficits caused by MS and managing incontinence of both bowel and bladder. Caregivers also want information regarding the services available to meet the needs of the person with MS as well as their own needs, the costs of those services, and their accessibility. Likewise, information on specific aspects of living with MS, such as adaptive equipment or special types of transportation, is often desired, as is information on the numerous financial issues that occur in having a family member with a chronic disease. Finally, it is important to remember that caregivers should have opportunities to share information on coping strategies others have found useful and that their requirements for information will change. As new problems arise, so too will the need for new types of information.
The second most important need caregivers have is for someone to listen to their story and try to understand the things that they have been experiencing. Often the things they experience are very painful; an understanding listener can validate what they are going through and can show respect, honor, and support for their commitment to care for the person with MS.
There are numerous opportunities for empathic listening. For those involved in clinics, efforts can be made to include the caregiver in the regularly scheduled visit of the person with MS. During that visit inquiry can be made of the caregiver’s emotional and psychological well-being. Taking the time to listen and support will pay dividends in the care of the person with MS.
Health care professionals can also support caregivers by having readily available any information on programs and/or resources from the local MS Society or other community support groups, by encouraging caregivers to attend support groups and to use respite, and by being sensitive to the tremendous psychosocial issues caregivers face.
Respite and Community Services
Most professionals who work with caregivers cite respite care as a critical support service for caregivers, yet the literature reports that respite and other community services are not often used by caregivers of people with MS, with only one third to one fourth of caregivers taking advantage of these services.2,5Given the enormous importance of these services to caregivers, this is an issue that must be addressed. Is there an informational problem of people not knowing what’s available in the community? Is there a financial problem; are people not able to afford the service? Does the service not fit the needs of the people as they define their needs? Do caregivers feel guilty about expressing their own needs for respite or other services? Medical personnel and those involved with clinics and programs such as the MSAC should sit down with caregivers and explore the underutilization of respite and community services from the caregivers’ perspective, and then develop specific, affordable services/programs that will meet the needs of caregivers as defined by themselves.
I think the MS community could develop services that caregivers would use more frequently if we could set an agenda at our local, state, and federal levels that would value the care provided by individuals to their ill and/or disabled family members. There is an urgency for formal recognition of the family’s caregiver role, with the provision of financial and other supportive resources—things like monies for in-home care; allowances for families with disabled members; reimbursement for respite care; good, accessible, handicap-equipped transportation services; incentives for home adaptations; funding for programs like the MSAC; and development of partnerships between government, family, and other community institutions. Above all, we should get rid of the current Medicare paradigm as the care model for those with chronic disease. The Medicare model, which is based on acute disease and acute rehabilitation, does not meet the needs of those with chronic disease. We must develop a separate chronic disease care system that delivers consistent care, seeks to prevent care crises, and supports the efforts of the informal caregiver as well as the person with MS.
On a more individual level, most of us who work in the MS area should provide care that encompasses the health needs of the caregiver as well as those of the person with MS. It may be as simple as communicating to caregivers that you are aware of the roles they play and how much they are valued. When working with the family over time, we have the opportunity to assess whether the caregiver is at risk for burnout; hopefully, we will have developed a trusting relationship where we can discuss this with the caregiver and suggest some resources that might be helpful.
As people who touch the lives of caregivers, as well as being caregivers ourselves, I think our greatest need is for hope; at the same time hope is the greatest gift we have to offer.
Hope is expressed in people’s lives in many different ways, but one definition I like is that hope is the foundation that helps us know that all things in life work for the good. It is what allows us to see purpose and meaning in our lives. It is hope that allows caregivers to acknowledge the uninvited guest in their lives (MS), and it is hope that provides the strength to keep going and not give up when it seems that life has nothing good to offer.
It is up to us as people who work with caregivers, and with each other, to project hopeful attitudes through caring, support, listening, educating, and advocacy. If we can find ways to give hope, our own lives will be enriched.
1. Hainsworth MA. Helping spouses with chronic sorrow related to multiple
sclerosis. J Psychosoc Nurs Ment Health Serv. 1996;34:36-40.
2. Winslow B, O’Brien R. Use of formal community resources by spouse caregivers of chronically ill adults. Public Health Nurs. 1992;9:128-132.
3. Duijnstee MS, Boeije HR. Home care by and for relatives of MS patients. J Neurosci Nurs. 1998;30:356-360.
4. Jackson G, Kelsey A. The needs of neurology patients after discharge. Prof Nurse. 1999;14:467-470.
5. Aronson KJ, Cleghorn G, Goldenberg E. Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. Disabil Rehabil. 1996;18:354-361.
Copyright © 2003, International Journal of MS Care