Huntington’s disease, caregiving, and caregiver burnout

Huntington’s disease is a neurodegenerative disorder that causes damage to and the loss of neurons in the brain. In the early stages, Huntington’s disease can cause subtle changes in mood, coordination, and motor control. As the disease progresses, symptoms become more severe and new symptoms emerge. These symptoms include involuntary movements (called chorea), problems with cognition (thinking and memory), and psychiatric problems (such as depression).

A person with Huntington’s disease will require help from a caregiver, and caregiving for someone with Huntington’s disease is an evolving process. As the disease progresses, so will the role and responsibilities of a caregiver.

Caregiving and Huntington’s disease

The term “caregiver” typically refers to loved ones—such as partners, siblings, or other family members—who care for a person with a medical condition they cannot fully manage on their own. In many cases, caregiving responsibilities may be divided among several people, though there is often one person acting as a primary caregiver and coordinating care among loved ones and friends.

Caring for someone with Huntington’s disease will include help with practical tasks like household chores, errands, preparing meals, following a schedule, and organizing paperwork. Caregivers may also accompany a loved one with Huntington’s disease to medical appointments—and in later stages of the disease, may participate in decisions about their loved one’s treatment and care.

Beyond practical help, caregivers also provide important emotional support and companionship to loved ones who are navigating life with a serious, progressive disease.

Caregiver stress and burnout

Being a caregiver for someone with Huntington’s disease is demanding. Because of the progressive nature of Huntington’s disease, the responsibilities of caregiving become greater over time. As the disease progresses and a loved one requires more care, many caregivers may neglect their own needs. There is also the emotional difficulty of watching a loved one live with a progressive illness that affects emotions, behavior, and functioning.

Caregivers of loved ones with Huntington’s disease are often under a great deal of stress and are at risk of “caregiver burnout.” Caregiver burnout is a state of mental, emotional, and physical exhaustion that occurs when the demands of caregiving become unmanageable.

Symptoms of caregiver burnout

While caregiver burnout can vary from person to person, common symptoms include:

• Negative emotions and moods, such as depression, sadness, anger, and irritability
• Feeling helpless, overwhelmed, or that you have little or no control over your life
• Loss of interest in hobbies, relationships, and socializing
• Feeling resentful toward the person with Huntington’s disease
• Getting too little sleep, sleeping too much, or feeling tired despite seeming to get enough sleep
• Neglecting personal health, such as exercising, eating well, and attending medical appointments
• Consuming alcohol or recreational drugs to cope
• Physical aches and pains
• Fatigue

Managing caregiver stress

If you are a caregiver for a loved one with Huntington’s disease, it’s important to take steps to avoid burnout. Here are some strategies that may help:

• Stay organized. Create and maintain a calendar that includes appointments and other caregiving responsibilities—and time scheduled for yourself.
• Try support groups. Consider participating in a support group for caregivers. It can help to talk to other people who have similar experiences to your own.
• Reduce stress. Caregivers need breaks. Start by making time for yourself to do something you enjoy at least once a day. You may also want to try stress-reducing activities like meditation, deep breathing, and yoga.
• Take care of your health. Make time for exercise, eating well, and healthcare appointments. Mental health, sleep, and stress are topics that should be discussed with your healthcare provider (HCP).
• Talk to a counselor. Working with a counselor or therapist can help you address the moods, emotions, and challenges that are part of caregiving.
• Look for community resources. Ask your loved one’s HCP about community resources that might be able to offer support.
• Ask for help. Reach out to loved ones and friends for help when you need it. For example, ask another family member to take responsibility for a certain task or a specific block of time.

Many caregivers feel guilty about taking time for themselves. Remember that prioritizing your mental and physical health will make you a better caregiver, allowing you to provide the best possible care to your loved one.