| What Community Resources are Available?
Individuals and families affected by HD can take steps to ensure
that they receive the best advice and care possible. Physicians
and state and local health service agencies can provide information
on community resources and family support groups that may exist.
Possible types of help include:
Legal and social aid.
HD affects a person's capacity to reason, make judgments, and handle
responsibilities. Individuals may need help with legal affairs.
Wills and other important documents should be drawn up early to
avoid legal problems when the person with HD may no longer be able
to represent his or her own interests. Family members should also
seek out assistance if they face discrimination regarding insurance,
employment, or other matters.
Home care services.
Caring for a person with HD at home can be exhausting, but part-time
assistance with household chores or physical care of the individual
can ease this burden. Domestic help, meal programs, nursing assistance,
occupational therapy, or other home services may be available from
federal, state, or local health service agencies.
Recreation and work centers.
Many people with HD are eager and able to participate in activities
outside the home. Therapeutic work and recreation centers give individuals
an opportunity to pursue hobbies and interests and to meet new people.
Participation in these programs, including occupational, music,
and recreational therapy, can reduce the persons dependence
on family members and provides home caregivers with a temporary,
much needed break.
Group housing.
A few communities have group housing facilities that are supervised
by a resident attendant and that provide meals, housekeeping services,
social activities, and local transportation services for residents.
These living arrangements are particularly suited to the needs of
individuals who are alone and who, although still independent and
capable, risk injury when they undertake routine chores like cooking
and cleaning.
Institutional care
. The individuals physical and emotional demands on the
family may eventually become overwhelming. While many families may
prefer to keep relatives with HD at home whenever possible, a long-term
care facility may prove to be best. To hospitalize or place a family
member in a care facility is a difficult decision; professional
counseling can help families with this.
Finding the proper facility can itself prove difficult. Organizations
such as the Huntington's Disease Society of America (see Information
Resources) may be able to refer the family to facilities that have
met standards set for the care of individuals with HD. Very few
of these exist however, and even fewer have experience with individuals
with juvenile or early-onset HD who require special care because
of their age and symptoms.
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