In the final stages of Huntington's disease (HD), individuals become fully dependent, often bedridden, requiring 24/7 care for all daily activities, with severe motor and cognitive decline leading to non-verbal states, though comprehension may remain; movement shifts from chorea to rigidity, and death usually results from complications like pneumonia or falls, highlighting the need for palliative care focused on comfort and symptom management.
Huntington's chorea, also called “Huntington's disease” or "Morbus Huntington", is a dominantly inherited disorder of the brain. It was named after the US physician George Huntington, who was the first to scientifically describe the disease in 1872.
The clinical characteristics of HD include involuntary movement, behavioral abnormalities, personality changes, and dementia. In addition to motor and cognitive impairments, some patients show micturition symptoms, especially urinary incontinence.
Supportive care for Huntington's disease
At this stage, a person with Huntington's is no longer able to do their own personal care and domestic responsibilities, and will have difficulty with mobility, needing to be in a chair or bed most of the time. Swallowing may be difficult and there may be significant weight loss.
Huntington's disease (HD) is a progressive neurodegenerative autosomal dominant disease characterized by choreatic and hypokinetic movements, disturbed behaviour, and cognitive decline. Pneumonia is the most common cause of death, followed by cardiovasculair diseases.
Avoid hard foods such as nuts and lollies. Avoid foods that separate into 'strings' or sections while being chewed, such as bacon or tomatoes. Try to choose foods high in nutritional and calorific value.
How quickly the disease gets worse and how long it takes varies. The time from the first symptoms to death is often about 10 to 30 years. Juvenile Huntington's disease usually results in death within 10 to 15 years after symptoms develop. The depression linked with Huntington's disease may increase the risk of suicide.
Let them talk about their emotions and let them know you're listening. Living with a degenerative and unpredictable disease can induce anxiety and depression which are both common side effects of Huntington's. This can be helped immensely by having the support of their loved ones around them.
It is important to remember that these outbursts of anger are commonly the result of the brain changes in HD, and the person with HD may not understand that you are trying to help them. These brain changes can make it difficult or impossible for someone with HD to view situations from the perspectives of others.
The term “latchkey incontinence” is often used to describe a person's constant and urgent need to urinate the moment they get home. Although the term is popular, it is not generally used in medical terminology. A person with latchkey incontinence is most likely experiencing symptoms of an overactive bladder or OAB.
Avoid lifting
Lifting puts strain on your pelvic floor muscles, so avoid it whenever you can. When you do need to lift something, such as picking up children or shopping bags, tighten your pelvic floor muscles before and during the lift.
Symptoms of Huntington's disease
Chorea refers to the restless, jerky or dance-like movements that can occur as the result of a movement disorder.
And for social and cultural as well as medical and scientific reasons, it played a far more important role in defining the discrete clinical entity that soon came to be known as 'Huntington's chorea' and by the late 1960s, as 'Huntington's disease'.
A person in the end stage of HD will not be able to speak or communicate in an understandable way. In addition, the person may lose control of facial expressions. They will not be able to express how they feel or if they have pain. Always assume the person understands, hears and sees you.
In addition to the cognitive, motor and neuropsychiatric symptoms, which likely relate to brain changes, people with Huntington's disease also experience a range of gastrointestinal disturbances, including diarrhoea, nutrient deficiencies, gastritis and unintended weight-loss, which are considered clinical features of ...
The 4-wheeled rollator has been shown to be the safest walking device for people with HD (1). The 4-wheeled walker produced safer and less variable gait when compared to other devices (1).
Other nutrients that may help include:
Beverages/Liquids:
Liquids should be the thickness recommended by your SLP or doctor: thin, nectar, or honey-thickened.
5 foods to limit or avoid while on the MIND Diet
Try to avoid highly processed foods, red meat, refined sugars, fried food, butter, margarine, cheese and excessive alcohol intake.
Palliative care can make a big difference. The palliative care team can manage symptoms and side effects of treatment. They can provide medications to relieve muscle spasms, calm nervousness and manage shortness of breath. Sometimes feeding tubes are necessary for nutrition if swallowing becomes difficult.
Aggression in the Home. Changes in behavior is a common feature of Huntington's disease. The changes may frustrate both the person with Huntington's disease and the people living with them.
Woody Guthrie was an American songwriter, musician, writer, and political activist who died with Huntington disease (HD) in 1967 at age 55. His relatively brief creative life was incredibly productive with countless songs and a tremendous volume of letters to his name.