What Is Huntington’s Disease?

Call Now 949-278-6181

At The Way to Aging, we help families throughout North Texas, Rockwall, Dallas, Also Serving California, Orange County, San Diego, Los Angeles, Riverside and Inland Empire navigate the challenges of dementia every day. Yolanda Lawler Gerontologist and former Executive Director of Assisted Living and Memory Care communities, I have guided countless families through the difficult decisions that often accompany cognitive decline.

While every person’s journey is unique, understanding the seven stages of dementia can help families prepare for future care needs and recognize when additional support may be beneficial.

Huntington’s disease is a rare, inherited brain disorder that gradually affects movement, thinking, behavior, and emotional health. It is progressive, meaning symptoms become more noticeable and care needs increase over time. Although there is currently no cure, treatment, planning, and supportive care can help people maintain safety, comfort, independence, and quality of life.

What Causes Huntington’s Disease?

Huntington’s disease is caused by a change in the HTT gene. This genetic change involves an abnormal expansion of a DNA sequence called a CAG repeat. It results in an altered huntingtin protein that damages nerve cells in parts of the brain responsible for movement, judgment, memory, mood, and behavior.

The condition follows an autosomal dominant inheritance pattern. If one parent carries the disease-causing gene change, each child has a 50% chance of inheriting it. This probability applies independently to every pregnancy. A child who does not inherit the altered gene will not develop Huntington’s disease and cannot pass that particular gene change to future children.

When Do Symptoms Begin?

Symptoms most commonly begin between ages 30 and 50, although they may appear earlier or later. The age of onset, first symptoms, and rate of progression differ greatly among individuals.

Learn More

What Are the Early Signs of Huntington’s Disease?

Early signs may be subtle and can resemble stress, depression, clumsiness, or another medical condition. Symptoms generally affect three areas.

Movement changes

• Small involuntary movements or twitching
• Problems with balance, coordination, or walking
• Clumsiness or frequently dropping objects
• Muscle stiffness or slowed movement
• Difficulty speaking clearly

One well-known symptom is chorea, which describes irregular, involuntary movements affecting the face, arms, legs, or trunk.

Thinking changes

• Difficulty concentrating or staying organized
• Slower processing of information
• Trouble planning or completing tasks
• Reduced judgment or decision-making ability
• Difficulty learning new information

Huntington’s disease may initially affect planning, attention, and judgment more noticeably than memory.

Emotional and behavioral changes

• Depression or anxiety
• Irritability or anger
• Apathy or loss of motivation
• Impulsive behavior
• Social withdrawal
• Personality changes
• Obsessive or repetitive behaviors

Depression and suicidal thoughts require immediate attention. In the United States, call or text 988 for crisis support. Call 911 when there is an immediate danger.

How Is Huntington’s Disease Diagnosed?

Diagnosis may involve a medical and family history, neurological examination, cognitive testing, mental-health assessment, and genetic testing. Doctors may also use brain imaging to examine symptoms or exclude other conditions.

A blood test can identify the CAG repeat expansion in the HTT gene. Deciding whether to have predictive testing before symptoms appear is deeply personal.

Anyone considering predictive testing should consult a genetic counselor or a medical team experienced with Huntington’s disease. Counseling helps people understand what test results can and cannot predict and provides support before and after testing.

Is There a Cure for Huntington’s Disease?

There is currently no cure or treatment that reverses Huntington’s disease. Care focuses on managing symptoms, preserving function, preventing complications, and maintaining quality of life.

Support may include:

• Medication for movement or psychiatric symptoms
• Physical therapy for balance, strength, mobility, and fall prevention
• Occupational therapy for safer daily activities
• Speech therapy for communication and swallowing problems
• Nutritional support for weight loss or changing dietary needs
• Counseling and support groups for individuals and families
• Palliative care for comfort and quality of life

How Does Huntington’s Disease Progress?

As the disease advances, a person may require increasing assistance with bathing, dressing, eating, medication management, walking, and communication. Later-stage concerns may include falls, weight loss, difficulty speaking, swallowing problems, aspiration, behavioral changes, and the need for continuous supervision.

Why Early Care Planning Matters

Huntington’s disease can eventually affect communication, insight, judgment, and decision-making. Planning while the individual can clearly express personal preferences gives that person a stronger voice in future care.

Important topics include:

• An advance healthcare directive
• Healthcare and financial powers of attorney
• Driving and transportation
• Home safety modifications
• Medication management
• Caregiver duties and respite care
• Future housing and long-term-care preferences
• Nutrition and swallowing support
• End-of-life wishes

Families do not need to decide everything at once. A flexible, step-by-step plan can change as the person’s abilities and needs evolve.

When Is More Care Needed?

Additional in-home support or residential care may be appropriate when safety and care needs exceed what the current arrangement can provide. Warning signs include repeated falls, unsafe wandering, missed medications, difficulty with personal care, choking, unexplained weight loss, severe behavioral symptoms, caregiver exhaustion, or an inability to remain safely alone.

Possible options include in-home care, assisted living, board and care homes, memory care, or another specialized setting. The best choice depends on physical abilities, cognitive and behavioral symptoms, nutritional needs, budget, location, and lifestyle preferences.

Families should ask prospective care providers about staff training, fall prevention, medication management, behavioral support, swallowing concerns, and their ability to support progressive neurological conditions.

Home Care

Supporting a Loved One With Huntington’s Disease

Caregivers also need support. Respite care, counseling, support groups, and assistance from relatives or professionals can reduce exhaustion and create a more sustainable care plan.

How The Way to Aging Can Help

Call Now 949-278-6181

Finding suitable care for someone with Huntington’s disease can be challenging. A community that serves other older adults may not offer the staffing, training, or behavioral support needed for a progressive neurological condition.

The Way to Aging helps families assess care needs, understand available options, compare appropriate communities, and prepare for future changes. Our guidance may include assisted living, board and care homes, memory care, and other supportive settings based on the individual—not simply the diagnosis.

If your family is navigating Huntington’s disease, contact The Way to Aging for a complimentary consultation and compassionate, personalized guidance.

Medical Sources

• National Institute of Neurological Disorders and Stroke: https://www.ninds.nih.gov/health-information/disorders/huntingtons-disease
• MedlinePlus Genetics: https://medlineplus.gov/genetics/condition/huntingtons-disease/
• MedlinePlus: https://medlineplus.gov/huntingtonsdisease.html

This article is for general educational purposes and does not replace professional medical advice, diagnosis, or treatment. Always discuss symptoms and care decisions with a qualified healthcare provider.