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CARING FOR PEOPLE WITH HUNTINGTON’S DISEASE
Hungtington’s disease is an
inherited degenerative neuropsychiatric disorder which affect both body and
mind. Symptoms most commonly begin between the ages of 35 and 50, although
onset may occur any time from childhood to old age. Research is progressing
rapidly but there is currently no cure. Huntington’s disease is inherited
in an autosommal dominant fashion. Each child of an affected parents has a
50% chance of inheriting the disease and is said to be at risk. The
discovery of the HD gene in1993 has made it possible to test at risk
individuals for Hungtington’s disease before symptoms occur. In the absence
of a cure however, the decision to be tested or not remains a difficult
one and there are many important legal, financial and personal
considerations. The clinical features of Huntington’s disease can be thought
of as a triad of emotional, cognitive and motor disturbances. Symptoms
include chorea (dance-like involuntary movement), clumsiness, slurred
speech, depression, irritability and apathy. Cognitive losses include
intellectual speed attention and short term memory. Huntington’s disease
affects people in different ways. One member of a family may have more
trouble with clumsiness while another may have emotional outbursts.
Moreover, symptoms of Hungtington’s disease in the same individual change
over time.
Although there is currently no overall remedy for this disease,
professionals are in agreement that a symptoms-specific,
inter-disciplinary approach is the best way to care, maintain and improve
the quality of life for the affected individual or family.
Specific care Issues
. Abuse of
the patient
. Behavioural
Issues
.
Communication Strategies
. Disability
issues
. Eating and
Swallowing
. Genetics of
Huntington’s disease
. Home safety
The following areas are being developed:
.
Driving Safety Issues
.
Issues regarding children and teenagers facing
Huntington’s disease.
.
Juvenile Huntington’s disease
.
Nutrition
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