How to Support a Loved One with Huntington's Disease

Huntington’s disease (HD), named for George Huntington, the physician who first described it in the late 1800s, is a rare, progressive genetic disorder that leads to uncontrollable movements, psychiatric symptoms, and cognitive impairment. What would make for the best support if you had to care for a loved one with HD?

At Memphis Neurology, with locations in Germantown, Tennessee, and Southaven, Mississippi, our expert team of neurologists has extensive experience treating movement disorders, including Huntington’s disease. While there’s no cure for the disease, treatments can help control symptoms. And there are ways you can help support a loved one going through the process.

HD symptoms

HD symptoms usually become noticeable while people are still in their 30s or 40s. It can develop before age 20, too, in which case it's called juvenile Huntington's disease. People with the adult-onset form live about 15-20 years after the symptoms begin. Symptoms present in three different categories:

1. Movement issues

These encompass both involuntary movements (e.g. breathing) and impairments of voluntary movements, including:

• Involuntary writhing or jerking (chorea)
• Muscle rigidity or contracture (dystonia)
• Slow or abnormal eye movements
• Problems with balance, gait, and posture
• Difficulty with speech and swallowing

2. Cognitive issues

These encompass problems with thinking, learning, and focusing:

• Difficulty focusing on tasks
• Difficulty prioritizing or organizing tasks
• Getting stuck on a thought, behavior, or action
• Lack of impulse control and frequent outbursts
• Sexual promiscuity
• Difficulty ''finding'' words
• Difficulty learning new information

3. Psychiatric issues

The most common psychiatric issue associated with HD is depression. Depression comes not so much from learning the diagnosis but more from injury to the brain and changes in brain function. Other symptoms include:

• Irritability, sadness, or apathy
• Social withdrawal
• Insomnia
• Fatigue,  loss of energy, and lethargy
• Obsessive-compulsive disorder (OCD)
• Bipolar disorder or mania
• Frequent thoughts of death and suicide

A person with HD can lose a lot of weight due to the chorea, and they generally develop motility problems, as well. Eventually, they also lose the ability to work, drive, and manage tasks at home, and most become eligible to receive disability benefits.

But the disease doesn’t stop there. Speaking and swallowing becomes difficult, and their movements become slow and stiff. People with advanced HD need full-time care, and most will ultimately succumb to pneumonia, heart failure, or other complications of the disease. HD symptoms are sometimes described, quite accurately, as having ALS, Parkinson’s, and Alzheimer’s — all at the same time.

Supporting a loved one with HD

If you’re caring for a loved one with HD, there are a number of practical considerations to resolve.

Creating a safe environment

Safety is important because effects like chorea can make it difficult for someone to maintain physical control of their own body. Cognitive effects that impair reasoning could also lead to accidental injuries.

Consider putting stair gates on your staircases so your loved one won’t accidentally take a tumble, and absolutely add handrails to both sides of the stairs for support. Remove throw rugs that can serve as tripping hazards and soften the edges of furniture. Also, make sure the bed isn’t too high so your loved one can get in and out of it comfortably.

Grab bars, bath floor grippers, and a shower stool are also important to install.

Helping with self-care

Make a checklist of daily activities whose length and/or complexity should be commensurate with the individual’s independence. Help them comb their hair and brush their teeth, ensure they’re well-hydrated, and prevent them from staying in one position too long, which can lead to pressure sores.

Attending to psychiatric needs

HD has a number of psychiatric and psychological effects. They can be partially managed with medication and professional therapies, but understand that the effects will worsen over time.

Help your loved one stay oriented by arranging a predictable schedule, calendars, reminder notes, clocks, and familiar surroundings. Also, speak with their medical providers about how to discuss hallucinations or other psychiatric issues with them in a way that minimizes their agitation and disorientation.

Attending to emotional and social needs

You know the patient better than any of their doctors do. You may, therefore, know what they value and what makes them happy. Try to include those aspects when planning your day. Staying socially connected can help optimize their quality of life.

If you’re supporting a loved one with Huntington’s disease, Memphis Neurology can help with therapies and advice on a wide range of topics. To get started, call us at either of our locations or book your appointment online today.