Research Frontiers

Johns Hopkins Center of Excellence

Social Services

Social worker Ms. Kit McFarland explains that the BHDC is mostly a research operation that also provides care to patients. A large part of Ms. McFarland's job is to provide tailored information about HD to families or individuals who have specific concerns. She also puts together an initial package of basic information for those who are unfamiliar with HD to use before they need more specialized help. Much of the time, the people who come to her for advice are families who have just learned that HD runs in their family (usually after one member was diagnosed with it) and they desire more information.

Ms. McFarland feels her job as a clinical social worker is to generally help people learn how to best support and stay involved with their family members that have been diagnosed with HD. For example, she gives them tips to help them make certain that the member of the family with HD stays well-nourished, such as using Ensure shakes. For family members who act as caregivers, she often finds that it is difficult for them to understand how their loved one will change behaviorally throughout the course of the disease, and so she tries to provide ways for them to cope with this issue. They may commonly encounter violent reactions from the family member with HD, but sometimes it can be hard to tell if it is intended violence or a motion from chorea. For those afflicted with HD, one of the most difficult parts of the disease is the gradual loss of their freedom- particularly when in comes to driving. If it comes time for the HD patient to stop driving but they refuse, Ms. McFarland might tell the family members or caregiver that the patient needs to be taken for a driving test, and tries to get the family involved in this decision. For more on HD and driving, please click here.

Another one of Ms. McFarland's chief tasks is to provide help to the outside community, particularly those who have reached the stage of HD where they need some kind of assisted living arrangement- either in nursing homes or other facilities. This is a difficult process because many individuals with HD are often not prepared to relinquish their independence, even when it is necessary. She also works directly with employees of nursing homes and assisted living facilities in the area to teach them skills they need to serve residents with HD. She explains that many of the issues that nursing home or assisted living facility employees will encounter with their HD residents are actually very common among individuals of that age- such as problems with getting residents to eat. The major differences in residents with HD, that pose greater problems to the staff, are very rapid weight loss and aggression. For more on the manifestations of aggression in HD, click here. Ms. McFarland is also highly involved in much of the Center's efforts to provide help, information, and services to those patients who have difficulties with transportation and cannot come to the center themselves.

Last Modified: 11/04/2007

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