From Onset to Advanced Care: A Deep Dive into the Stages of Huntington’s Disease

As an inherited condition that is passed down between generations, Huntington’s disease is a brain disorder that is caused by an abnormal gene in Chromosome 4. As a dominant trait, a child who inherits the condition will at some point in their life develop the disease. As a result 1 out of every 10,000 to 20,000 people suffer from symptoms of Huntington’s disease every year. 

Because the symptoms include loss of brain cell function that controls movement, personality, cognitive abilities, and behavior, investing in quality care is pivotal to maintaining one’s quality of life.

Huntington’s Disease Symptoms

Early Symptoms

During the onset period of Huntington’s disease, individuals will experience a variety of cognitive, emotional, and physical changes including:

  • Mood swings, anxiety, irritability, and depression
  • Difficulties with multitasking, planning, memory, and focus
  • Issues with balance, involuntary movements, and clumsiness.

Intermediate Symptoms

During the middle stages of Huntington’s disease, patients experience their earlier symptoms but in a more severe state:

  • Deteriorated cognitive and emotional capabilities like forgetfulness and difficulty having conversations (speech impairment)
  • More frequency of involuntary movements that are eventually diagnosed as Chorea

Late Symptoms

During the later stages of Huntington’s disease, individuals become completely codependent on caretakers to perform everyday functions:

  • Significant motor skill difficulties: dystonia, severe chorea, and rigidity
  • Cognitive decline that presents and may eventually lead to dementia

Huntington’s Disease Progression Timeline

Because Huntington’s disease is a condition that worsens aspects of your brain over time, it is a progressive disease that is most often fatal after roughly 20 years.

Though Huntington’s onset symptoms vary significantly from person to person, diagnosis is most often given during one’s 30s and 40s. Though only 15,000 Americans currently suffer from it, more and more generations are at risk of developing it. As a progressive disease, symptoms worsen over time, but the rate at which that happens varies. Nevertheless, each person often falls into one of three categories.

3 Stages of Huntington’s Disease

Early Stage

During the early stages of diagnosis, patients have mild symptoms and remain fully functional. Many times, people continue working, driving, managing finances, and living without the need for a caretaker. However, the presence of minor involuntary movement begins to show in addition to complex problem-solving, as well as depression and irritability. 

Middle Stage

During the intermediate stage, symptoms are more noticeable and begin to affect everyday living. Patients may not be able to work or drive, manage finances, or engage in household chores. They can maintain a sense of normalcy and autonomy in eating, dressing, and performing personal hygiene tasks. However, involuntary movement has increased and there are difficulties swallowing, falling, and organizing information in sequential order.

Late Stage

During the later stages of HD, full-time assistance is needed to perform all daily living tasks. Many patients are nonverbal and bedridden at this point, though they comprehend certain moments throughout the day. Because of a lack of communication, psychiatric disabilities are present but difficult to treat. Involuntary movement is severe but surpassed by symptoms of dystonia and bradykinesia.

Individuals also become more vulnerable to life-threatening conditions like pneumonia and heart disease at this stage.

Huntington’s Disease Treatments

Medications

Many individuals suffering from Huntington’s will take medication to manage symptoms of mood disorders and involuntary movement:

  • Antipsychotics for chorea
  • Antidepressants for mood swings
  • Mood stabilizers

Therapies

In addition to medication, patients may participate in a variety of therapies to limit the rate at which their symptoms progress:

Lifestyle Adjustments

Because Huntington’s is a progressive disease, many treatment options seek to limit the rate of decline. Many patients undergo lifestyle adjustments not only to remain comfortable throughout the remainder of their life but to slow down progression including:

  • Nutritional support
  • Tailored exercise plans
  • Support groups and counseling

Frequently Asked Questions

How common is Huntington’s disease?

One out of every 10,000 to 20,000 Americans experience Huntington’s disease in the United States.

What is Huntington’s disease life expectancy?

Individuals with HD are expected to live 10 to 25 years after the onset of symptoms. 

What is the difference between Huntington’s disease vs Parkinson’s disease?

While Huntington’s disease impacts cognitive and psychological abilities in addition to mobility, Parkinson’s mostly affects an individual’s movement and mobility. 

Is Huntington’s disease more common in males or females?

There is no evidence that Huntington’s is more common in males; it affects both women and men across all age groups and ethnicities. 

Terra Vista Memory Care Assisted Living

Huntington’s disease is a progressive condition that affects people from all backgrounds. Though there is no known way to reduce your likelihood of developing HD, you can speak with your doctor about running tests to see if you carry the gene deformity that causes the condition. If you have a loved one suffering from HD, hiring nurses and caretakers with Huntington’s experience will aid in their comfort level and life quality. 

If you have any questions or are seeking to speak with qualified healthcare professionals about the next steps, reach out to us today. As an Alzheimer’s care facility, we want to be a resource for you and your family during this transition period.

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Meet the Author

NATALIE MCFARLAND, BSN, RN, CDP

Natalie has compiled over eighteen years experience providing outstanding care to people with Alzheimer’s disease and dementia. In addition to being a certified Alzheimer’s and dementia care trainer, McFarland is a licensed continued education instructor for nurses and social workers through the Illinois Department of Professional Regulations. She has also developed several Alzheimer’s research partnerships. Included in those projects were Dr. Virginia Cruz, Ph.D., RN, Associate Professor of SIUE and Dr. George Grossberg, M.D., Medical Director of the Department of Psychiatry and Neurology at Saint Louis University. Natalie is a graduate of Southern Illinois University.