Huntington's disease is a genetic disorder that causes movement, cognitive, and emotional issues and deteriorates over 15-17 years from onset until death. Maintaining quality of life is important as there is no cure. Nursing care involves educating families, addressing emotional needs, and focusing on maintaining function through therapies, managing symptoms like dysphagia and dysarthria, and individualizing care based on patient needs including nutrition, mobility, skin integrity, and spiritual/emotional support. Support groups and recreational activities can also help patients and families cope with the disease.

1. Running head: IMPROVING QUALITY OF LIFE FOR PATIENTS WITH 1
Improving Quality of Life for Patients with Huntington's Disease
Shiloh Solis
PHSSN
Care of the Terminally Ill
NURS4373
Mrs. Hayes
April 21, 2014

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Improving Quality of Life for Patients with Huntington's Disease
Huntington’s Disease is degenerative disorder that causes movement abnormalities,
cognitive deterioration, and affective disturbances (Aubeeluck, Wilson, Stupple, 2011). It is
inherited genetically, and there is no cure for HD. Symptoms will begin around the age of 40 and
death follows from 15 to 17 years after the onset of the disease. People suffering from HD may
experience a range of emotional changes, which may include mood swings, outbursts of emotion,
depression, irritability, and apathy (Stanley, 2009).When a nurse is providing care for a patient
with this disease they must educate the family about the disease trajectory, recognize and support
the family when grieving, advance planning for expected loss, and address guilt (Klager,
Duckett, Sandler, Moskowitz, 2008). At the start of the disease process there is a slow
progressive deterioration of intellectual function along with some personality changes. Minor
movement abnormalities also begin such as, restlessness, hyperreflexia, and dysarthria.
Hypokinesea, rigidity, and dystonia may also follow. In the middle stages motor disorders begin
to become more apparent. Dysphagia, gait disorders, bradykinesia are some examples of
movement disorders. Chorea, relating to involuntary movements, is one of the major signs of
HD. People with this disease will also begin to have voluntary motor anomalies such as ocular
motor disturbances, clumsiness, in common everyday activities and disturbances in motor speed,
fine motor control and gait (Aubeeluck, Wilson, Stupple, 2011). In the last stages they will gain a
loss of independence, have serious restrictions in functioning and will fully depend on others for
their daily living. Full nursing care is required primarily in the last stages of this disease. The
actual cause of death for people with HD might actually be attributed to secondary illnesses such
as pneumonia, choking, or deficiencies in nutrition. Patients will have impaired speech, impaired
swallowing, and will most likely need a PEG tube for adequate calorie intake. Sleep is also

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disrupted, and they will lose their ability to walk because their gait becomes severely disturbed.
Weight loss is also common, in which they may need an increase in dietary intake.
Quality of life, defined by the WHO, is an individual’s perception of their position in life
in the context of the culture and value systems in which they live and in relation to their goals,
expectations, standards, and concerns’. Due to the fact that HD is not curable, focus must be
placed on maintaining function and attempting reduce the impact of the disease itself. Quality of
life must be the major area care taker must focus on. Occupational therapy and physical therapy
have been shown to help with physical disabilities and home adjustments. Dieticians and speech
and language therapists are also helpful for impaired swallowing, communication, and feeding.
For movement disorders the care taker might want to consider non-drug interventions. Drugs
used to treat chorea may make voluntary movements more difficult. If the patient is experiencing
dysphagia, the care provider must prepare food to an appropriate size and texture, and encourage
slow eating without any distractions. Dysarthria is a common symptom and for this symptom
you would want to use alphabet boards, yes/no cards to facilitate communication, allow time to
speak, and give cues and prompts to help. Using a schedule or to do lists, cues to aid in memory
retrieval, and sticking to a routing could help if patients suffering from memory impairment.
Planning and decision making might include: avoiding open ended questions, using short simple
sentences, routines and lists to organize activities, and offering a limited number of choices. If
the patient begins to experience depression, drug therapies may be initiated but must start at a
low dose. SSRIs may be used to treat irritability, and avoiding the situation that might actually
make them irritable. For apathy you want to keep a routine using a calendar or schedule,
encourage them to participate because they may do it even though they lack the ability to do the
activity. When a patient is nearing the end of their life the nurse or whoever the care taker might

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be may want to consider caring for them at home rather than the hospital and consider
gastrostomy feeding. Family support plays a major role in maintaining quality of life for a patient
with HD. Support groups like the Huntington’s Disease Association can deliver relations to
people with comparable experiences and provide patients and their caregivers a social network
and community to share experiences (Aubeeluck, Wilson, Stupple, 2011).
Group activities organized by recreation therapists create social stimulation for patients.
When the disease leaves the patient in a nonverbal/immobile state family becomes progressively
important. In comforting a patient certain stimuli may be helpful such as: music, horticulture,
decoration, and recreational feeding. Some other therapeutic recreation programs include adapted
bowling, storytelling, screenscape decoration, HD unit parties, fashion shows, award ceremonies,
card games, guided visualization, and cosmetic caregiving (Klager, Duckett, Sandler,
Moskowitz, 2008). When skin integrity becomes an issue, nurses must be conscientious and
responsive not only in wound care but in prevention. Patients who are spiritual might also like
visits from pastoral staff and/or participating in fellowship and family rituals and songs. Many
find their faith as a great source of sustenance and peace of mind while having this disease.
When it comes to nutrition and food, nurses are encouraged to be innovative with feeding
techniques and food preparation: special treats, such as sauces and favorite snacks, are included
in the menu, and staff are welcome to mix foods or serve deserts first, if these techniques will
ensure adequate intake (Klager, Duckett, Sandler, Moskowitz, 2008).
During the course of this illness, care must be individualized to the patient in order to
support a great quality of life. Planning to the needs of the patient will create a better experience
for both the care taker and the patient. Specialized input is required on many fronts: mobility,
psychiatry, therapeutic recreation, nutrition, and skin integrity (Klager, Duckett, Sandler,

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Moskowitz, 2008). Nursing staff must be very knowledgeable and dedicated to provide the best
techniques and interventions for the patient. Encouragement and support for the family and
patient must also be an ongoing process as the disease progresses to the end of life.

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References
Aubeeluck, A., Wilson, E., & Stupple, E. N. (2011). Obtaining quality of life for Huntington's
disease patients and their families. British Journal Of Neuroscience Nursing, 7(5), 634-
638.
Klager, J., Duckett, A., Sandler, S., & Moskowitz, C. (2008). Huntington's disease: a caring
approach to the end of life. Care Management Journals, 9(2), 75-81.
Stanley, C. (2009). Understanding Huntington's disease. British Journal Of Neuroscience
Nursing, 5(2), 88-89.