For the purpose of this fact sheet, the beginning of end-of-life in HD is determined as the stage when the person affected has little control over movement, is bedbound, unable to communicate, unable to eat and drink on his/her own and experiences severe chorea or extreme rigidity.
Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia, and uncontrolled pain.
Stage 5. During late-stage Huntington's disease, or stage V, individuals experience speech difficulty, weight loss, and loss of bowel and bladder control. They will have dementia and severe limitations in voluntary movement and will be fully dependent on assistance.
Huntington's Disease (HD) is not fatal in itself. People with HD have a shorter life expectancy and die of other life-threatening complications related to this disease. Pneumonia and heart disease are the two leading causes of death for people with HD.
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.
Stage IV (Late Stage HD)
The progressive breakdown of nerve cells in late-stage Huntington's disease results in severe motor symptoms, including extreme difficulty with voluntary movements, severe involuntary movements, abnormal slow movements, rigidity, and speech impairment.
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. The clinical depression associated with Huntington's disease may increase the risk of suicide.
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.
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.”
Frustration, Irritability, and Anger
Your loved one with HD may become easily upset, angry, and stuck on an action or idea. It is important to remember that these outbursts of anger are commonly the result of HD, and the person with HD may not understand that you are trying to help them.
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.
Weight loss can make symptoms worse and weaken the patient's immune system, making them more vulnerable to infections and other complications. Huntington's disease itself is not usually fatal, but it can lead to choking, pneumonia, or other infections that can lead to death.
Huntington's disease is a condition that damages nerve cells in the brain causing them to stop working properly. It's passed on (inherited) from a person's parents. The damage to the brain gets worse over time. It can affect movement, cognition (perception, awareness, thinking, judgement) and mental health.
The range of disease duration was between 2 and 17 years, the oldest living to age 91.
Symptoms typically emerge from age 30 to 50, but also can develop in children and older adults. Late-onset Huntington's, characterized by some as emerging after age 5o and others after age 60, is thought to be less severe than earlier onset Huntington's.
Huntington's disease also causes a decline in thinking and reasoning skills, including memory, concentration, judgment, and ability to plan and organize. Huntington's disease brain changes lead to alterations in mood, especially depression, anxiety, and uncharacteristic anger and irritability.
The most common sleep problems reported by HD patients include insomnia, difficulties in falling asleep, frequent nocturnal awakenings, and excessive daytime sleepiness.
Huntington's disease patients have a tendency to choke on food due to a lack of fine motor control (control of small muscles). They often experience enormous increases in appetite and sometimes trying to eat quickly to satisfy urgent hunger can lead to choking.
(For more information on Complications of HD, click here.) It is important to know that stress can lead to complications and the worsening of symptoms in people with HD.
Huntington's disease (HD) is an inherited disorder that causes nerve cells (neurons) in parts of the brain to gradually break down and die. The disease attacks areas of the brain that help to control voluntary (intentional) movement, as well as other areas.
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].
Huntington's disease is an inherited genetic condition that causes dementia. It causes a slow, progressive decline in a person's movement, memory, thinking and emotional state.
Categorizing Psychiatric Issues in HD
The first consists of mental illnesses which are common in the general population and are readily recognized by physicians, especially major depression, which has been estimated to affect 40% of people with HD at some point during their illness.