How to help someone with Huntington's Disease

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How to help someone with Huntington's Disease: a visual slide consisting of a stethoscope and the words Huntington's Disease

How to help someone with Huntington's Disease?

Do you want to know the basics of helping someone with Huntington's Disease? This article aims to help adults look after their family member who has Huntington's Disease by offering some useful, practical suggestions from the Huntington's Disease Youth Organization. These tips are split into different topics and stages of Huntington's Disease (early, mid and late stage). 

Written by Michaela Crutsinger, OTDS. Edited by K. M. Knewstep-Watkins, OTD, OTR/L

Early stage Huntington's Disease

Eating and meals

A family member with new Huntington's Disease symptoms may have difficulties making and eating meals. Mealtime difficulties are often due to new issues with either motor control and/or cognition. 

  • HD can cause difficulties such as spilling food and dropping items during meals. There are aids (“adaptive equipment”) such as utensils with built-up and/or weighted handles as well as plate guards to minimize spills that may help now or in the future. Using plastic cups and plates is also helpful in reducing the risk of lacerations from broken glass.
  • Persons with HD need more calories and often have big appetites. Offer to prepare high-calorie snacks and meals as needed.
  • To minimize issues with spills, encourage the family member to eat meals at a table and try to reduce distractions during meals.
  • Fatigue and high energy expenditure can make food preparation tiring. Offer to help your family member prepare meals and snacks. Also, pre-preparing snacks or meals can be helpful. For example, make a complete lunch and place it in the refrigerator.
  • Help your family member create a list of simple meals. Repeating favorite meals can be helpful in reducing stress.
  • If your family member with HD has been cooking, double-check that the oven and stove were turned off.

Getting Dressed

A person with HD can have trouble with fasteners, such as shoelaces, buttons, and zippers. Fasteners can take more time, attention, and effort to do because they may begin to have difficulty with making small, controlled hand movements. At other times, some people with HD may become more likely to forget to line up the fasteners or forget to do the fasteners. 

  • When shopping for new clothes, consider helping your family member pick out clothing that is easy for him to manage. Often people with HD like pants with elastic waists and shoes that are slip-on or Velcro.
  • Encourage a family member with HD to get in the habit of sitting down while getting dressed. This makes it easier to focus on managing the fasteners and less likely to fall.
  • A common trend for people with HD can be a tendency to complain about being too hot. Remember that your family member may not be comfortable wearing as many layers of clothing as you prefer to wear.

In addition to these suggestions, shopping for adaptive clothing for disabled people will also help.

Using the bathroom with Huntington's Disease

If your family member is often rushing to the bathroom or has fallen in the bathroom, this is helpful information to share with the medical team. The medical team can help your family member address these concerns.

Driving with Huntington's Disease

Some people with HD can continue to drive safely for years. However, some other people with HD are limited by changes and challenges in motor control, cognition, and visual perception. All of these can limit driving safety.

  • Help your family member to concentrate by avoiding loud music, lengthy conversations, or any other distractions
  • Encourage them to avoid areas with high traffic and high-speed zones
  • Help your family member plan their trip before driving
  • If you have concerns about your family member’s driving, it is important to address this concern tactfully. Share your concern with the primary caregiver for your family member. For more detailed information and guidance, share the concerns with your family member’s medical provider. The medical provider can help you and your family in locating supportive resources. In fact, some professionals are trained to help people decide when and how to retire from driving.

Mobility

  • During this stage, people with HD can still walk independently but may start to trip or fall more often. Sometimes, these falls are due to changes in balance and a new difficulty staying focused. Encourage your family member to use caution and avoid distractions, especially when walking on uneven or slippery surfaces.
  • In some cases, either person-to-person or depending on the surface, it may be helpful to use trekking poles with rubber tips. It is encouraged that a physical therapist teach your family member how to adjust the trekking poles and learn how to use them.
  • As a family, explore enjoyable, active family activities to encourage your family member with HD to maximize his strength and coordination. Make favorite family activities easier so everyone can participate and enjoy them. For example, family biking could now include the family member with HD using a recumbent-style bike.

Home safety

  • A safe environment is necessary: keep areas clear and free, remove throw rugs, pad furniture/doorways, stabilize furniture, lower the maximum water temperature, and provide non-skid mats in the bathroom.
  • A home safety evaluation may be helpful.

Decline in cognitive function with Huntington's Disease

  • Your family member may experience memory loss and difficulty with concentration and learning new things. They may repeat the same thought over and over again and may have emotional outbursts
  • Be prepared for these difficulties and make things easier for them by providing visual and verbal cues, labels, short sentences, and breaking tasks down.
  • These strategies may not be as necessary now as they will be in the future, but getting the family into good routines now will establish a helpful foundation for later.
  • Your family member may experience memory loss and difficulty with concentration and learning new things. They may repeat the same thought over and over again and may have emotional outbursts
  • Be prepared for these difficulties and make things easier for them by providing visual and verbal cues, labels, short sentences, and breaking tasks down.
  • These strategies may not be as necessary now as they will be in the future, but getting the family into good routines now will establish a helpful foundation for later.
  • Consider using assistive technology for Huntington's Disease, which can help maintain or improve an individual's functioning and independence.

Middle stage Huntington's Disease

Eating and meals

  • Follow instructions from your family member’s Speech-Language Pathologist and physician regarding feeding. If you are preparing food, be sure that is the prescribed consistency and that liquids are thickened as needed.
  • Let your family member assist as much as they are able- let them pick up small pieces of food and take drinks as independently as possible.
  • Helpful adaptive equipment may include plate guards, suction cup bowls, a lidded cup, and/or a non-slip placemat.

Driving and transportation

  • The decision to stop driving is a very difficult one. Offer rides as needed and emotional support for this change.
  • If you and/or your family suspect that your family member with HD should retire from driving but will not agree, inform the medical team.

Balance and mobility with Huntington's Disease

  • Balance and mobility issues vary widely from person to person. But, your family member will require more support and assistance over time for mobility.
  • Become familiar with safe ways of helping your family member with HD in different situations. Learn proper verbal and tactile cues to help them safely transfer.

Thinking and cognitive issues

  • Break tasks into steps, and allow for extra time
  • Help your family member stick to their daily routine.
  • Make sure your family member has rest periods in their routine to combat fatigue.
  • As needed, label things around the house, and provide visual and verbal cueing.
  • Break tasks down into simpler parts.

Late stage Huntington's Disease

Eating with late stage Huntington's Disease

  • Follow the recommendations of the Speech Language Pathologist for the appropriate consistency of food and drinks. This may include chopping or pureeing food and thickening liquids if recommended.
  • Be aware of signs of difficulty swallowing (coughing, gagging, and drooling).
  • Keep in mind the high energy expenditure involved if there is significant chorea. Choose high-calorie and double-portioned snacks.
  • If swallowing becomes too dangerous and difficult, a feeding tube may be an option that your family considers with the medical team.

Staying at home

  • During the late stage, the caregiver's burden and responsibility can become significant.
  • If health complications and needs call for it, making the transition from the home to a facility may be necessary and something your family considers.

Mobility

  • Follow instructions from caregivers, physical therapy, and occupational therapy on safely completing transfers and operating a lift, if applicable.
  • It is important for everyone to be safe while helping a person with HD move.

Home safety for Huntington's Disease

  • Emphasize a calm, clean environment without clutter.
  • Continue to remove tripping hazards, pad doorways, and furniture, following recommendations from caregivers and occupational therapists.
  • Follow recommendations from an occupational therapist, as given.

Severe cognitive debilitation.

  • There is severe cognitive debilitation in the late stage of Huntington's Disease.
  • Try to be patient with your family member and interact with them positively
  • Though their thinking and mind are fuzzy, they will probably still recognize you and understand your speaking.

How to help someone with  Huntington's Disease? is republished from HYOD under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License

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Article by
Michaela Crutsinger

Dr. Michaela Crutsinger, OTD is a occupational therapist in Mechanicsville, VA. She currently practices at Sheltering Arms Rehabilitation Hospital.

Caption:

Helping someone with Huntington's Disease begins with understanding how the disease affects a person's life | ©tutul_1410/Adobe Stock

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