Huntington’s disease and mental health

Huntington’s disease is an inherited neurodegenerative disorder, a disorder that causes the breakdown and death of neurons.

Neurons are the main type of cell in the nervous system, and work by transmitting and receiving chemical and electrical signals. This enables communication between the body’s many tissues, organs, and systems. The body contains many different types of neurons with specific functions.

Huntington’s disease primarily affects neurons in the brain. More specifically, it causes a breakdown and death of neurons in parts of the basal ganglia, clusters of neurons located deep within the brain.

How Huntington’s disease affects the brain

The basal ganglia coordinate and control movement. When neurons in the basal ganglia die off, a person will experience abnormal and uncontrolled movements, called chorea. These can include jerking movements, grimacing, problems with gait and/or posture, abnormal blinking and/or eye movements, and problems with speech and swallowing.

Additionally, the basal ganglia play an important role in regulating behavior and emotion, and Huntington’s disease also causes changes in mood, thinking, behavior, and emotional control. These symptoms can occur before or alongside abnormal movements.

Apart from changes in the brain, a diagnosis like Huntington’s disease can have a significant psychological impact. While there are therapies that can ease symptoms, there are currently no existing therapies that can stop or slow the progression of Huntington’s disease (though there are new therapies under development). People are advised to make end-of-life decisions soon after a diagnosis. Receiving this kind of diagnosis can contribute to depression, anxiety, grief, and many other difficult emotional states.

Recognizing mental health symptoms

Huntington’s disease affects different people in different ways. In general, you should discuss any change you notice in yourself or your loved one with your healthcare team. Keeping a symptom journal or daily notes can help you recognize changes and patterns in symptoms.

Some common mental health disorders and symptoms to watch for:

• Depressive symptoms, such as persistent sadness, low moods, feelings of hopelessness, and loss of interest in activities that are typically enjoyable.
• Apathy, such as loss of motivation, difficulty or unwillingness to start things that need attention, and low energy levels.
• Lack of emotional response to events or circumstances.
• Disorganization, including difficulty with concentration, decision making, and adapting to change.
• Irritability and anger, becoming frustrated or losing patience quickly, outbursts, and disproportionate emotional reactions.
• Changes in sleep habits, both sleeping much more than typical or much less.
• Changes in appetite and/or changes in weight, including both weight gain and unintended weight loss.
• Anxiety, including feelings of worry, dread, and apprehension, especially with no clear reason for these feelings.
• Obsessive compulsive behaviors or fixations, such as repeatedly bringing up a specific thought, idea, or question.
• Difficulty getting out of bed.
• Neglecting personal hygiene.
• Physical symptoms, such as pain, rapid heart rate, sweating, and shallow breathing.

Practical strategies for navigating mental health symptoms

Different symptoms and disorders can require different strategies to navigate, but here are some general approaches that may help. Your healthcare provider will be your best source of information.

• Maintain consistent routines for meals, activities, and sleep schedules.
• Keep the home organized and decluttered to maintain a consistent and predictable environment.
• Use calendars, whiteboards, or notes that are placed in the same locations each day to make organization easier.
• When addressing difficult behaviors such as agitation, use a calm, reassuring approach.
• Avoid confrontation, try to redirect or provide a distraction when dealing with anxiety, obsessive thoughts, or fixations.
• Acknowledge when a person is experiencing difficult feelings, such as frustration, anxiety, or hopelessness.
• If aggression and personal safety are a concern, have a plan to safely exit a situation and call for help.

Mental health emergencies

Many people with Huntington’s disease—and many caregivers—experience suicidal ideation or other thoughts of violence or self-harm. If you believe you or someone you know is at risk, trust your instincts. Talk about this topic in a direct but compassionate manner and know that there are people who can help you:

Resources for mental health emergencies:

• People considering suicide can reach out to the Crisis Text Line by texting ‘HOME’ or ‘HOLA’ to 741741.
• Call, text, or chat the Suicide & Crisis Lifeline at 988.
• Call 911 or go to the nearest emergency room if you or someone you are with is actively considering suicide, and do not leave the person alone.

Treatment for Huntington’s disease

While there is no therapy that can stop or reverse Huntington’s disease, treatment can help manage symptoms. Symptom management can improve the quality of life of a person with Huntington’s disease, loved ones, and caregivers. This includes symptom management for mental health disorders and symptoms that occur as a result of Huntington’s disease.

A treatment plan may include the following:

• Medications to help control involuntary movements
• Medications for depression, agitation, outbursts, and other mental health symptoms and disorders
• Psychotherapy and counseling for the person with Huntington’s disease, caregivers, and family members
• Physical therapy, occupational therapy, and speech therapy (which also addresses problems with eating and swallowing)

Disease-modifying therapies, including gene therapies, are under development, and some may be available through clinical trials.

A healthcare provider will be your best source of information about treatment, including balancing treatment goals with medication side effects (a critical and important topic to discuss) and working with a genetics counselor to make decisions about genetics testing for family members.

Also consider participating in a support group where you can connect with other people who are facing similar challenges, either a support group that meets online or in person.