Pneumonia and heart disease are the two leading causes of death for people with HD.
People with Huntington's disease usually die within 15 to 20 years of their diagnosis. The most common causes of death are infections (such as pneumonia) and injuries related to falls.
Background Huntington's disease (HD) is a progressive neurodegenerative autosomal dominant disease characterised by choreatic and hypokinetic movements, disturbed behaviour and cognitive decline. Previous studies into the cause of death in HD have shown that the most frequent primary cause of death in HD is pneumonia.
Some common end-of-life symptoms include significant weight loss, episodes of fever, respiratory distress and sleeping or deep unresponsiveness for most of the day.
Stage 5: Advanced Stage
The fifth and final stage is when the disease will be more severe, and it's likely that the individual will require care 24/7. They will likely be immobile, unable to communicate and find it extremely difficult to perform basic motor functions such as swallowing.
The advanced stage lasts between 11 and 26 years from disease onset. Patients with Huntington's at this late stage will need total support in daily activities from professional nursing care.
After Huntington's disease starts, a person's functional abilities gradually worsen over time. The rate of disease progression and duration 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 years after symptoms develop.
Huntington's disease (HD) is an autosomal dominant neurodegenerative disorder that usually starts in mid-adult life. The clinical disease progresses to death over an average of 20 years.
People can start to show the symptoms of Huntington's disease at almost any age. Most will develop problems between the ages of 30 and 50. The condition gradually gets worse for around 10-25 years, until the person dies.
The most painful conditions in Huntington's, said Achterberg, are limb pain, headache, abdominal pain and fractures. “I think we should do more work in validation of pain tools, including observational pain instruments,” he said. “And for clinicians, I suggest you be especially aware of abdominal pain.”
Agitation can occur at any time during the course of the disease. Agitation is defined as inappropriate behavior in a particular context characterized by excessive motor or verbal activity that may include physically aggressive behavior, restlessness, or pacing [1].
Stage IV: (9 - 21 years from illness onset)
Requires major assistance in financial affairs, domestic responsibilities, and most activities of daily living. For instance, comprehension of the nature and purpose of procedures may be intact, but major assistance is required to act on them.
The range of disease duration was between 2 and 17 years, the oldest living to age 91.
Although not directly related to HD, stress is nevertheless related to the progression of the disease because it adds to the neurodegeneration that is already taking place. Chronic stress can alter nerve cells, brain structure, and brain function.
People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.
When alcohol becomes a coping mechanism for Huntington's disease, that's when it becomes a problem. “With any neurodegenerative or medical disease, drinking a lot can certainly affect your balance and your gait,” says Dr. Oguh.
Aerobic exercise has been shown to improve cardiovascular fitness and motor function in people with Huntington's. Aerobic exercise requires continuous movement of large muscles to increase the heart rate. This can include activities such as stationary cycling, walking at a brisk pace or uphill, and swimming.
When involuntary movements become more frequent, there is a chance the patient can get hurt. Also memory and speech may be affected more and lead to other problems. At this point an assisted living facility or memory care facility may be needed.
While the cause of the disease is known — a single mutated gene — there is no cure. “Our plan is to conduct human clinical trials that deliver stem cells to replace damaged brain cells, reducing levels of harmful proteins that build up in the brains of Huntington's disease patients.”
There's currently no cure for Huntington's disease or any way to stop it getting worse. But treatment and support can help reduce some of the problems caused by the condition.
Early symptoms
memory lapses. depression – including low mood, a lack of interest in things, and feelings of hopelessness. stumbling and clumsiness. mood swings, such as irritability or aggressive behaviour.
Symptoms of Huntington's disease usually develop between ages 30 and 50, but they can appear as early as age 2 or as late as 80. The hallmark symptom of Huntington's disease is uncontrolled movement of the arms, legs, head, face and upper body.