HD and the family

HD is also a family disease because of its impact on every family member. As the disease progresses, the family role of the altered person will gradually change. The spouse or partner will have to assume more and more of the housekeeping, decision-making and parenting duties which his/her partner may no longer be able to fulfill. In addition, the spouse or partner will most likely become the primary care giver.
Children and adolescents must face living with a mother or father who is ill and whose behaviour may be erratic. They may even be asked to participate in the parent’s care. For parents, telling children about HD can pose difficult questions. Should a child/children be told about HD? If so, at what age. When is a child old enough to cope with the idea of being at risk for HD?

There are no easy answers, particularly since children develop at different rates and each family situation is different. Generally, it is a good idea to be as open as possible without being alarmist, and to convey the facts bit by bit. This way, a child can develop a gradual awareness of HD rather than being suddenly overwhelmed by information.