Resources to Support Young & Adult Caregivers

Caregiving in HDTwo people holding hands

Many family members and friends of those who have HD find themselves providing care in various ways. Caregiving tasks can include helping the person with HD eat, get dressed, bathe, take medications, run errands, and complete household chores. However, caregiving often goes beyond providing direct care. You may also have to manage finances, contact doctors, and take over the caregiving responsibilities of family members affected by HD. For example, as a spouse, you may have to take on extra childcare responsibilities when your partner with HD can no longer help with these tasks. If your parent has HD, you may also have to provide care to your younger siblings. You may take on a caregiving role without realizing it.

HD affects mood, movement, behavior, and thinking abilities. Often, those with HD require increasing amounts of care as they progress with the disease. Each person with HD has different needs. Sometimes it may take some trial-and-error to find the caregiving strategies that work best for your family members with HD.

Being a caregiver is not an easy job. Caregiving is rewarding but can be mentally and physically stressful. However, you do not have to face these challenges alone. Below are some resources and strategies to help you care for both your loved ones with HD and yourself. Don’t hesitate to reach out for help and seek advice on how to care for your loved ones.

Please also see our "Patient and Family Support" tab for more information about medical coverage, long-term care, advance directives, and other resources. Also, please view our "Challenging Behaviors" tab for information on how to manage challenging behaviors in HD. Please contact us for additional resources and support.

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Self-Care as a Caregiver

It is important to remember to take time to relax and recharge. As a caregiver, this can be especially easy to forget when your focus is on caring for a loved one. Even if you are not the primary caregiver for a loved one with HD, living in an HD family comes with challenges, and it is important to make sure that your own needs and desires are being met. 

It is not selfish to take time for yourself. Without taking time to recharge, it is more likely that you will become overwhelmed and burned out from your caregiving duties. When you take time to care for yourself, your loved one with HD will benefit as well. Below are some ways in which you can show yourself compassion and make sure that you are also receiving the care that you need.

 

1. Ask for help.

  • Do not be afraid to ask for help, especially when you are feeling stressed and overwhelmed. Seek and accept support from others. You can request help from family members, friends, neighbors, and others who you can trust. Instead of caring directly for the person with HD, someone who is less familiar with the disease may be able to help you with other tasks, such as running errands, helping with house chores, or watching over young children. You may find it helpful to have a list of tasks that others can help you with when they would like to provide support. 

  • Professionals are available to connect you with resources and support you. Reach out to the HD Center at UPenn to learn what resources are available. Social workers through the HD Center at UPenn and through HDSA are available to speak with you.

  • Respite care is also available. This can help reduce stress and provide you with a break from caregiving. If you are concerned about affording care, please contact us to discuss your options and what you might qualify for.  Respite care options include:

    • Paid in-home help

      • You can find an in-home help person through community boards, word-of-mouth from friends/neighbors/etc., or from agencies. Home health aides can provide care in your home.

    • Adult day programs

      • Adult day programs provide your loved one with socializing and activities (such as art, music, games, exercise, discussions, and meals) for usually 4-8 hours per day. Your loved one has the option to attend every day or only on certain days. Some also offer transportation to the center from your home. These programs are offered by churches, community centers, hospitals, and specialized adult day care centers.

    • Paid out-of-home respite care

      • This care is often offered at assisted living facilities and nursing homes. The time of stay typically ranges from 3 days to 3 weeks.

  • Remember that there is no “perfect” caregiver, and trust yourself that you are doing the best you can at any given moment. Set realistic goals and recognize when your responsibilities are becoming too much for you to manage. Don’t be afraid to say “no” when others request more from you than you can tackle. 

 

2. Talk to someone.

  • Reach out to friends, religious leaders, family members, and others who you trust. These individuals can provide support and listen to what you are experiencing as a caregiver. It may be difficult to communicate your needs and potential frustrations to the person whom you are providing care for, so having someone who you are able to talk to—about caregiving or other topics—can provide a sense of relief and comfort. 

  • Support groups can also provide you with both emotional support and practical strategies as a caregiver. The HD Center at Penn and the Huntington’s Disease Society of America (HDSA) offer support group services for those impacted by HD. Facebook groups and other virtual support networks are also available, but use caution as not all of these are professionally monitored. As a young caregiver, it can be especially helpful to talk to others your own age who are going through similar life experiences. If you are a caregiver ages 9-29, you can join HDSA’s National Youth Alliance (NYA) to connect with other young people, share your experiences, and receive support. Youth social workers are also available to support you through the NYA.  

  • Mental health professionals are available. Being a caregiver is difficult. You may also be at risk, gene-positive, or gene-negative while caring for your loved one with HD. All of your feelings are valid. Talking to a therapist can help you cope with these emotions. Social workers and other HD professionals are often willing to inform therapists about HD to relieve some of this burden from you. Also, free telehealth sessions with psychologists and social workers who are knowledgeable about HD are also provided by HDSA. Additionally, if you are a young caregiver, you can reach out to a school counselor about your situation at home so that you can receive support in school. Many colleges and universities also offer free mental health services that you can use as a student.

    Click here to find therpists near you

  • Stay connected with friends and family. It can feel lonely being a caregiver, and you may struggle to maintain social ties. Spend some time reaching out to loved ones and maintaining your connections with others.

 

3. Go for a walk.

  • Going for a walk allows you to take a break, relax, and engage in physical activity. Being outdoors can calm your mind and help reduce stress. Although you may prefer to go alone (if you are old enough and it is safe to do so), you can also go for a walk with friends and family members! Your family member with HD can join you if they are still able to safely walk (or if you are able to safely help them in a walker, wheelchair, etc.). Walking is a great form of physical activity, and being outdoors can help you and your loved one with HD relax.

 

4. Care for your body.

  • As a caregiver, it can be difficult to remember to care for your own body. Aim to get 7-8 hours of sleep per night, and try to engage in 30 minutes of moderate physical activity each day. You can try short exercises throughout the day (5-10 minutes) to provide you with breaks from your responsibilities. Also, make sure that you are drinking enough water, and try to maintain a healthy diet. Limit your use of alcohol and other drugs.

  • Do not forget about your own healthcare needs. Remember to get your routine medical checkups and care for any health problems that you may have. If you do not have enough time to take care of yourself because of your caregiving duties and other responsibilities, it is important that you reach out for support (see Tip #1).

 

5. Try meditation, breathing, yoga, and other relaxation techniques.

  • Meditation and breathing can help quiet your mind and relieve stress and anxiety. You can play relaxing music or nature sounds in the background to help you focus on your breath and the present moment. 

  • Yoga incorporates breathing techniques with body movements to nourish both your mind and body, and it improves your strength and balance. Guided meditation, breathing, and yoga videos for both beginners and advanced practitioners are available for free on YouTube, apps, and streaming services. Your family members with HD may also find these practices calming and benefit from the mind and body exercises—chair yoga is particularly well-suited for those with HD.

  • You may also turn towards prayer and other forms of spirituality to help you through challenging times. Find what helps you relax, and try to incorporate these practices into your daily routine.

 

6. Engage in activities that bring you joy and happiness.

  • Be sure to have some time each day to engage in an activity you enjoy. Below are some ideas of activities that you may enjoy doing.

    • Art (drawing, painting, crafting, etc.)

    • Exercise (walking, running, biking, yoga, Tai chi, etc.)

    • Music (singing, dancing, listening to songs, playing an instrument)

    • Hiking, gardening, and other outdoor activities

    • Spending time with friends and family

    • Spending time with a pet

    • Reading

    • Watching TV shows or movies

    • Playing sports

    • Playing video games, board games

  • Create a list of things that make you happy and relaxed. Schedule time for self-care on your calendar, and make it one of your priorities! You must first care for yourself to be able to best care for others.

Links to Resources