Know the disease, alter approach to care for multiple sclerosis patients

Waxing and waning symptoms make disease course unpredictable

An estimated 400,000 people in the United States are diagnosed with multiple sclerosis, an unpredictable neurological disease that can cause blurred vision, loss of balance, poor coordination, fatigue, and even paralysis and blindness. Because the typical patient is a woman between the ages of 20 and 50 when first diagnosed, she doesn't appear to be a likely home health patient, but experts interviewed by Hospital Home Health say that MS patients are not only likely patients, they also are patients who require a different approach in home health care.

"We know that about 25% of MS patients need long-term care services at some point of their life, with between 5% and 8% of those patients choosing nursing home care," says Dorothy E. Northrop, MSW, ACSW, vice president of research and clinical operations for the National Multiple Sclerosis Society in New York City. "Although we don't have statistics, I would guess that between 15% and 20% of patients are choosing home health care to provide assistance beyond what family members can provide," she says.

The type of assistance that MS patients require varies according to the type and stage of the disease, points out Northrop. Home health services may vary from personal assistance to therapy and nursing services, but even when more complex services are needed, the home health staff member needs to remember that MS patients have different psychosocial needs than a traditional home health patient, she adds.

"Most MS patients don't look ill and they don't want to be treated as disabled, so the caregiver may not realize that the patient requires assistance with something other than what the caregiver is providing," says Kent Griswold, PhD, president of Griswold Special Care in Erdenheim, PA. For example, a home health aide might be told to take care of the patient's needs, but if the patient is a woman with a family and children, taking care of the whole family's laundry as opposed to only the patient's laundry is meeting her needs, he points out. Providing care to an MS patient often means assisting with more than her immediate needs, he adds.

"MS patients want to maintain control of their lives as much as possible," points out Northrop. For this reason, patients should be allowed to direct their own care as much as possible, she suggests. "Be sensitive to their feelings about loss of control of their bodies, loss of work life, and isolation from social outlets," she says. "Approach development of their care plan in a collaborative manner."

One way to demonstrate sensitivity is to avoid the word "care" as much as possible, says Northrop. "MS patients prefer to say they need assistance rather than care," she adds.

Another way to show that you understand the disease is to admit that the patient is an expert on his or her particular condition and ask for input and ideas about the services needed, she says.

"MS patients don't want to give up control over every part of their life," points out Griswold. "They don't want aides telling them what time to eat or what to do during the day," he says. Aides who are preparing a meal, should not only ask the patient what he or she wants for lunch or dinner, but also ask if the patient would like to prepare it with the aide's assistance, he suggests.

Empathy important for staff

Selecting staff members for the service line team for MS patients requires careful planning, says Diane Walker, RN, MS, general manager of Griswold Special Care. "You need someone who doesn't see all home health patients as the same type of patient," she says. MS has a unique effect on each patient, so the caregiver must be able to recognize that each MS patient has different needs and different symptoms, she adds.

"Most MS patients prefer a caregiver that is around their own age," points out Griswold. There are a lot of social issues associated with MS that often isolate patients and the presence of someone to whom they can relate creates a better relationship, he says. "MS patients also don't want someone wearing a uniform, which represents illness or disability," he adds.

There is a wide range of symptoms that can affect patients, and home health staff members need to understand and recognize them in order to evaluate the patient's condition, says Northrop. "One of the most difficult aspects of MS is the vacillation of the disease symptoms, especially fatigue," she says. "A patient may feel fine in the morning but be exhausted in the afternoon," she explains. The sudden fatigue may be easy to misunderstand as laziness or depression, but the caregiver needs to look at the whole picture rather than a single symptom at a particular moment in order to accurately assess the patient, she suggests.

The most challenging symptoms to manage are changes in the patient's cognitive abilities, says Northrop. Cognitive changes may be subtle so patients and caregivers may not recognize them as part of the disease process or may attribute them to depression. Short-term memory loss and ability to organize and follow through on plans create additional stress for patients coping with other symptoms. Caregivers can help patients by writing, or reminding patients to write instructions, to-do lists, and notes that will help them stay organized and on track, she adds.

When most MS patients seek home health assistance, they may not require much more than help with activities of daily living, says Northrop. The disease's progression, however, may make the need for more complex care necessary over the years, she adds. "It is important that there be a multidisciplinary team for MS patients because they may require occupational therapy, physical therapy, speech therapy, and nursing care at different times," she explains.

Because most MS patients are not elderly, they or their spouses are working, so about 65% have private insurance, points out Northrop. About 25% of patients have Medicare as a result of being covered by Social Security Disability and the remainder have Medicaid coverage or are uninsured. In addition to insurance coverage, families may pay out of their own pockets for additional services, she says.

One way that home health agencies can help MS patients and their families is to identify other community resources, suggests Northrop. "Several of our local chapters have programs that offer intermittent help to families in times of need and they also maintain their own lists of community resources."

Making sure that staff members are educated and equipped to meet the needs of MS patients is a valid way to increase admissions and create a niche in the marketplace. The key to successfully providing services to MS patients is to learn about the disease and listen to the patient, says Northrop. "The goal should be to help patients be as independent and as well as they can be."


For more information about multiple sclerosis patients and home health, contact:

  • Kent Griswold, PhD, president, Griswold Special Care, 717 Bethlehem Pike, Suite 300, Erdenheim, PA 19038. Phone: (212) 402-0200. E-mail:
  • Dorothy E. Northrop, MSW, ACSW, vice president of research and clinical operations, National Multiple Sclerosis Society, 733 Third Avenue, 3rd Floor, New York, NY 10017. Phone: (212) 476-0454. E-mail:

To download a copy of the National Multiple Sclerosis Society's Guidelines and Recommendations for Home Care Providers and Personal Care Assistants, go to Select "For Professionals" on top navigational bar, then choose "PRC Publications" on left navigational bar. Scroll down page to the guidelines.

The National Multiple Sclerosis Society also offers telephone and e-mail consultation for home health and other health care providers who have questions related to care for their patients. The e-mail address is Toll-free phone number for consultation is (866) 678-7328.