LATE STAGE
during the time surrounding death. 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.
Hospice referrals for Huntington's can be challenging because it's difficult to predict decline. Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia, and uncontrolled pain.
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.
Pneumonia and heart disease are the two leading causes of death for people with HD.
Conclusion The most primary cause of death in HD is aspiration pneumonia.
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.
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 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.”
Palliative care has its origins in cancer care, but is important for all kinds of chronic and progressive diseases, including HD [17]. Its relevance in addressing needs may increase with increasing severity and progression of the disease, with increasing loss of functional capacity.
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.
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.
The range of disease duration was between 2 and 17 years, the oldest living to age 91.
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.
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.
It affects approximately six people per 100,000 across Europe, North America, and Australia, with lower documented prevalence in Asia (4). Common emotional and behavioral difficulties among persons with HD include depression, anxiety, irritability-anger, aggression, perseveration, disinhibition, and apathy (5–14).
Rarer causes of dementia. 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. Huntington's affects about 8 in every 100,000 people in the UK.
Some authors define LoHD as after 50 years [3–5], but more recent studies define LoHD as onset after 60 years [6–10]. Between 4.4–11.5% of individuals with HD have an onset age of over 60 [8, 10, 11]. Reported presentation of LoHD varies, and the natural history and prognosis of LoHD remains unclear.
Stage 5: Advanced Stage
Often, individuals that are in the advanced stage will fall ill due to infections or injuries. Unfortunately, this often results in Huntington's patients' lives coming to an end.
There have been reports that juvenile onset Huntington's chorea is almost always inherited from the father, and that late-onset Huntington's chorea is inherited more often from the mother than from the father.
Pneumonia: Difficulty swallowing and decreased mobility can increase the risk of pneumonia, including aspiration pneumonia. Infections: Infections can develop as a result of the overall decline in health and as a result of diminished self-care.
Many people with Huntington's disease report that their sleep patterns are affected and sometimes are awake most of the night, then continually catnap or doze throughout the day. Many find themselves experiencing long periods being awake or asleep.
End of life and palliative care aims to help you if you have a life-limiting or life-threatening illness. The focus of this type of care is managing symptoms and providing comfort and assistance. This includes help with emotional and mental health, spiritual and social needs.