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Caring for someone with Huntington’s disease: A guide for family members, friends, and caregivers.

Huntington’s disease is a genetically inherited disease of the brain. It is progressive in nature, gradually affecting a person’s motor skills, cognition, mood, and memory, and is eventually fatal. So, once a person is diagnosed with the disease, it is a slow yet steady decline in their ability to care for themselves.

A Huntington’s diagnosis, at first, may seem like a devastating development in anyone’s life. Not just to the victim, but also to their immediate family members, friends and loved ones. But with the immense amount of ongoing research and studies, the resources at hand, coupled with careful planning, Huntington’s can certainly be made manageable. Through it all, the long-term support of family and friends is of critical importance. Continue reading to see how you, a loved one of someone with Huntington’s, can help them cope and live a life not limited by their diagnosis. 

(From this point onwards Huntington’s Disease will be referred to as “HD”)

DISSECTING A HUNTINGTON’S DIAGNOSIS

The very first thing you can do is to understand exactly what a Huntington’s diagnosis entails. Knowing exactly what to expect will prevent you from being caught off guard.

HD can be broken down into three stages: early stage, middle stage, and late stage. In each of these stages there are physical, behavioral, mood and memory changes you can expect in your loved one.

The Huntington’s Disease Society of America has categorized the symptoms of Huntington’s in the following manner.

symptoms in the early stage of Huntington’s

  1. Minor involuntary movements (chorea)
  2. Subtle loss of coordination
  3. Difficulty thinking through complex problems
  4. Depression, irritability, or disinhibition (using socially inappropriate words/comments or actions)

In this stage individuals are able to function normally most of the time, working, driving, handling money, even living independently.

One important factor though, to keep in mind is that depression, which is very common among individuals with HD, is not necessarily caused because of a dire, life altering prognosis, but rather due to physiological changes in the wiring of the brain. It is also important to note that depression can often occur even before any manifestation of physical symptoms. (Fernandes, 2017)
Depression will have to be managed through the right medication, psychological counseling, and monitoring.

symptoms in the middle stage

  1. More prominent chorea (involuntary movements)
  2. Difficulty swallowing
  3. Development of difficulties with balance, making victims prone to falls
  4. Weight loss
  5. Difficulty sequencing, organizing and prioritizing information

In this stage, individuals will start to lose the ability to work, drive, handle money or live independently. This is the stage where you really begin to see the kind of impact this disease is going to have on your loved one. They may still be able to eat, dress and take care of their personal hygiene to some extent, but they will still require assistance in performing any of these tasks.

symptoms in the late stage

  1. Either severe chorea OR rigidity, dystonia, and bradykinesia (slowness of movement)
  2. The inability to speak
  3. Various unrecognized psychiatric symptoms – unrecognized due to the inability to communicate effectively

At this stage individuals are bedridden and completely dependent on their caretakers. But what is heartbreaking is that though they may be bedridden and nonverbal, they will still retain comprehension.

(Huntington’s Disease Society of America, 2021)

According to the Mayo Clinic, the progression of the disease is unique to each individual but is likely to vary between 10 to 30 years from diagnosis to death. (Mayo Clinic, 2020)

Whether you are the primary caregiver of an individual with HD or not, it is important to educate yourself and know why and how to best take care of your loved one. 

MAJOR AREAS TO ADDRESS WHEN TAKING CARE OF A LOVED ONE WITH HD

When dealing with Huntington’s it is important to always keep the following overall objectives in mind.

  1. Help your loved one deal with depression and prevent them from socially isolating themselves – this, at times, and depending on the individual, may seem like a lofty goal to have, because along with depression your loved is very likely to experience a range of psychological and cognitive changes. But depression is the most common symptom among individuals with HD, and so, it is important to focus on managing it. One more aspect to be cautious about is the fact that individuals with HD are prone to suicidal ideation as well. (Epping & Paulsen, 2011) Medication and the collaborative support of a physician will help in dealing with this situation. And there are more courses of action you can take to help your loved one, which we will discuss shortly.
  2. To prolong your loved one’s independence as long as possible, at whatever capacity. And to help them maintain their integrity and privacy.

If we were to break down the overall objectives further, these are the major areas to address when taking care of a loved one with HD:

  1. The dietary and nutritional changes in your loved one
  2. Maintaining regular physical activity
  3. Maintaining mobility and independency
  4. Maintaining communication

It could get very easy to forget yourself in the midst of caring for a loved one with HD. But it is crucial that you are focused on yourself too. So, the following areas should be addressed pertaining to yourself:

  1. Be prepared for emergencies and crisis
  2. Focus on self-care

Let us take a closer look at each of these areas.

Diet and nutrition of a person with hd

The nutritional needs of a person with HD need to be carefully and meticulously met. There are several factors to consider:

  1. Because of increased movement (due to chorea) and metabolic changes, there is an increased energy expenditure in persons with HD, leading to weight loss. (Huntington’s Disease News, 2021) To counter this condition, an increased caloric intake must be accommodated.
  2. Difficulty or discomfort in swallowing (dysphagia) is a common symptom in HD. There is poor coordination between bringing food to the mouth, chewing, forming a bolus, swallowing, and inhibiting breathing at the same time. Because of this, individuals with HD tend to spill food more frequently and chew inadequately, putting them at a higher risk of choking or aspiration.  (Huntington’s Disease Society of America, 2021)

Keeping the above-mentioned facts in mind, these are some steps and precautions you can take to help accommodate the nutritional needs of a person with HD:

  1. Make sure they eat a “brain-healthy” diet
  2. Vitamin B12 (meat, dairy, eggs, poultry)
  3. food rich in antioxidants (variety of fruits and vegetables with deep, rich colors)
  4. essential fatty acid such as Omega 3 rich food and other healthy fats such as olive oil, butters made of nuts, and avocados
  5. Instead of three big meals, let them eat 6 smaller meals spread throughout the day
  6. Resort to frequently using cream, evaporated milk, whole milk, or condensed milk as supplements instead of low fat or skim milk
  7. Provide blended, pureed, or softened food
  8. Provide meals in a peaceful environment, with minimum distractions and good lighting
  9. Help them maintain good posture while eating, to help with swallowing
  10. If it’s possible, let them remain at the table for 20 – 30 minutes to help with digestion
  11. Let them use a flexible straw to drink
  12. If using cups, only fill them up halfway to prevent spillage
  13. Let them use plastic dishes and utensils to prevent breakage, and use large utensils to make it easier to hold
  14. Know the Heimlich Maneuver

(Paist, 2021)

Exercise and physical activity of a person with hd

According to several researches conducted, exercise/regular physical activity has proven highly beneficial for individuals with HD, including a reduction in symptoms of depression and anxiety. (European Huntington Association, 2021)

Consider the following exercise regimen for individuals with HD:
 

  1. Aerobic Exercise – a minimum of 2 hours and 30 minutes per week is recommended
  2. Walk daily – 10 to 15 minutes to begin with, and then gradually increase walking time
  3. Stationary bicycle (be wary of their poor balance and coordination during this activity)
  4. Daily exercises in balance and coordination – to retrain the balance system
  5. Stand on one leg
  6. Walk with one foot in front of the other
  7. Stand on uneven surfaces like foam or pillows
  8. Stand in front of a counter with feet together and try to balance without holding the counter – add head turns, arms movements, or closing the eyes to make the exercise more challenging
  9. Strengthening exercises -2- 3 times a week
  10. Lift light weights (1 -2kg) for arm strengthening exercise – only in the early stage
  11. Squats and lunges for leg exercises
  12. Full range of motion exercises for arms and legs to strengthen joints

The Huntington’s Disease Society of America further recommends special HD oriented exercise and instructional videos done by Shana Verstegen, who is a graduate from the University of Wisconsin with a degree in Kinesiology – Exercise Science. Her videos are freely available on YouTube.

maintaining mobility and independence

Your loved one with Huntington’s disease will require a few tweaks in how day to day activities are accomplished. As the disease progresses it will become more and more needful to alter certain arrangements. Your loved one will require help and planning to ensure that they will be able to maintain their mobility despite challenges.

Here is a list of helpful things you can do:

  1. Keep necessary items at hand’s reach and leave counters and shelves uncluttered.
  2. Minimize furniture, so that your loved one can move around easily
  3. Remove unnecessary carpets and rugs
  4. Place textured strips on bathroom floors for traction
  5. Place grab bars in the bathroom as needed
  6. If possible, install raised toilet seats and something to grab on to while lowering into/hoisting themselves off the toilet
  7. Place chemicals out of reach
  8. Install door locks that can be opened from inside and outside, as your loved one may be prone to paranoia at times
  9. When your loved one is traveling outside by themselves have nametags sewn into their clothing with their name and phone number
  10. Replace buttons and zippers with snaps and Velcro fasteners
  11. Replace zipper heads with large, plastic rings
  12. Consider switching belts for suspenders, if possible
  13. Encourage the use of slip on shoes with rubber soles instead of regular shoes

(Paist, 2021)

maintaining communication

Coming up with ways to maintain communication with your loved ones is very vital. As the disease progresses your loved one will find it harder and harder to communicate because of physical limitations and also because of cognitive changes. It is important to remain positive and creative when it comes to staying in contact with your loved ones.

Consider the following suggestions:

  1. When asking questions, refrain from asking open-ended questions as much as possible. Present two choices instead
  2. Try asking yes/no questions whenever possible
  3. Address their requests as promptly as possible
  4. Get your loved one to participate in creative activities or in activities they enjoy doing
  5. Have pre-programmed telephones for your loved one to use
  6. At a certain time, you must anticipate that your loved one won’t be able to speak at all. Before that happens, establish a definite way to communicate yes/no, by nodding the head or by blinking, for example.

managing crisis/emergency

It is important to realize and accept the fact that your loved one is going to change and not be the person you are used to associating with. They will continue to need more and more of your help in whatever capacity you are able to give it. If you are a primary care giver, then you must always have a plan and the ever-ready assistance of your family and friends. Even under normal circumstances, crisis and emergencies can take place at any time. In this situation with your loved one it is vital that you are prepared for any number of scenarios.

Here are some ways you can ensure that you are ready to manage a crisis or an emergency:

  1. Prepare an emergency kit packed and ready
  2. Print and paste the phone numbers of your friends, and family alone with those of your hospital, GP, and even police station
  3. Get your neighbors help. Keep them informed to be vigilant of what might be taking place at your home. They might also be willing to keep an emergency bag in their own homes
  4. If you have children living with you, make sure they know crucial phone numbers and have ways of maintaining contact
  5. Keep an emergency fund available
  6. Always keep your phones charged

(Huntington’s Disease Association)

focus on self care

You must not forget that while your loved one may be diagnosed with a debilitating disease; you are too affected acutely by their diagnosis. Your loved one will not go through their disease alone. You will be with them every step of the way, at whatever capacity. It is therefore very important that you take care of yourself as well.

Here is a compilation of a few steps you can take to ensure that you receive the help you need as well.

  1. Don’t be reluctant to take breaks and treat yourself at regular intervals
  2. Build up a community/support team of experts and friends with whom you can talk, discuss and better understand your loved one and what they are going through
  3. Understand that various loved ones and friends can help you in different ways. For example, some may be good listeners, while some may be helpful in more practical ways
  4. As was mentioned earlier, it is of utmost importance that you are not taken by surprise by the symptoms your loved one will display. Educate yourself, read, watch, and listen to the vast resources and material available regarding HD.
  5. If possible, have access to a therapist for both you and your loved one

One more important thing to remember is that you won’t necessarily have to implement all the suggested changes in diet, exercise regimen, etc., of your loved one’s daily routine immediately. HD is a progressive disease, meaning it will take time for symptoms to start showing. You, as a family member, friend, or care take will have the responsibility of looking out for your loved one and helping them to make adjustments slowly, with the guidance of your physician and other professionals. It is important that you don’t start treating them differently immediately after a diagnosis. But be sensitive to their plight. Treat them with the same love and affection, but with a more subtle vigilance to their limitations. Help them transition as they become more and more dependent on you and your support group. HD can easily become a lonely journey for your loved one as they struggle more and more every passing day. Don’t let it be. Instead, keep growing, learning, and discovering new ways of triumphing over this unforgiving disease.

References

Epping, E. A., & Paulsen, J. S. (2011). Depression in the early stages of Huntington disease. Neurodegenerative Disease Management, 407 – 414.

European Huntington Association. (2021). Active Huntington’s. Retrieved from European Huntington Association: http://eurohuntington.org/active-huntingtons/

Fernandes, J. (2017, March 23). Depression in Huntington’s Is Linked to Early Changes in Brain Wiring, Study Finds. Retrieved from Huntington’s Disease News: https://huntingtonsdiseasenews.com/2017/03/23/depression-huntingtons-disease-linked-early-changes-brain-wiring/

Huntington’s Disease Association. (n.d.). Hunting’s disease: A carer’s guide. Retrieved from Huntington’s Disease Association: https://www.hda.org.uk/media/1996/a-carers-guide.pdf

Huntington’s Disease News. (2021). Huntington’s Disease and Nutrition. Retrieved from Huntington’s Disease News: https://huntingtonsdiseasenews.com/huntingtons-disease-and-nutrition/?cn-reloaded=1

Huntington’s Disease Society of America. (2021). Huntington’s Disease Stages. Retrieved from Huntington’s Disease Society of America: https://hdsa.org/what-is-hd/huntingtons-disease-stages/#:~:text=In%20early%20stage%20HD%2C%20individuals,depression%2C%20irritability%2C%20or%20disinhibition.

Mayo Clinic. (2020, April 14). Huntington’s Disease. Retrieved from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/huntingtons-disease/symptoms-causes/syc-20356117#:~:text=The%20rate%20of%20disease%20progression,increase%20the%20risk%20of%20suicide.

Paist, F. M. (2021). Huntington’s Disease: A Caregiver’s Guide. Retrieved from Today’s Caregiver: https://caregiver.com/articles/huntingtons-caregiver-guide/

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