Managing Huntington’s Disease: A Caregiver’s Guide

As a caregiver, you would need to equip yourself with various tools and resources to fully give the attention your patient/loved one deserves. It isn’t enough relying on doctors to address medical issues – after all, you would be the one the person you’re caring for will entrust his or her life. With that said, it would be for the best interests of all parties involved for you to know how to manage certain diseases and disorders. And one such condition would be Huntington’s disease (HD).

Huntington’s disease is an uncommon hereditary malady that affects the brain cells of an afflicted person, often resulting in a degradation of mental facilities such as cognition (the loss of one’s capability to think clearly). The progressive brain disorder also could lead to involuntary movements and emotional instability. Dealing with patients diagnosed with HD is challenging, and below are tidbits of caregiving advice that would be helpful for those who are caring for people with HD.

According to the National Institute of Neurological Disorders and Stroke, about 30,000 Americans currently have Huntington’s disease. It is also estimated that around 70,000 people would have the abnormal gene that could later develop into HD. The disease is a relatively new discovery that occurred in 1994 when scientists found that the condition was caused by a mutation of chromosome 4. The mutation resulted to a “CAG repeat” to happen in the DNA more often than what is normally observed. The more instances the sequence repeated, the higher the chance that HD manifested at an earlier age. Also, HD has a 50% chance to occur for people with parents afflicted with the said brain disorder.

Though there is still no cure for it, scientists have developed a medication that could regulate its symptoms. However, even with such dosage, those with HD would still need round-the-clock care from a skilled care provider. The latest when it comes to progress on treating the disease would be a protein-based treatment – but more studies need to be conducted to find out if the said treatment was effective or not. Nonetheless, family caregivers would need to learn more about HD in order to take care of their loved one in the best way possible.

Here are some caregiving guidelines on how to manage the most easily seen symptoms of Huntington’s disease:

It All Begins at Home

Modify the home to account for HD. Consider using plastic plates that do not break, adding skid rugs in bathrooms, and clearing floors of objects that can trip the person would be adequate in securing their safety. You would want to prevent any accidents from happening!

One’s Posture Will Matter

Customize seats for your loved ones’ posture. HD affects the posture of the affected person the longer it goes, and they would need specially modified seating so they can remain comfortable. Think of it this way – comfort results to not only happier patients but to lesser problems for caregivers to tackle as well!

Food May Be a Hazard

Beware of choking. Ensure that food won’t cause any choking by cutting food into smaller portions, and altogether avoiding crispy or crumbly ones. Mealtime should be a pleasurable experience – make sure to prepare food properly to avoid any messy (and fatal) accidents.

Caregivers will also need to contend with their loved ones’ reduced cognitive faculties. You would need to have and be in the right mindset, especially when dealing with a patient with Huntington’s disease. Here are some tips on how to help patients’ improve their attention:

One-by-One, Take Your Time

Avoid multiple tasks. People with HD can easily get confused because their concentration can be divided. Have them focus on one task at a time. Additionally, do tasks/activities together. Go on your patient’s pace. This way, not only will he/she accomplish what he/she sets to do, but you’ll also create that emotional connection needed in caregiving.

Repetition is the Key

Promote routine activities. Create regular activities that can be repeated in a daily manner so they can progressively remember each one and help develop memory. These activities can be as simple as brushing one’s teeth or something complicated such as solving math problems. The point of the matter is that you want your loved ones’ mind stimulated. An active mind matters in disorders such as HD, so it would be best to keep engagement up.

A Connection Begins When You Listen to Each Other

Turn down the noise. Lowering the volume of the television or the radio will help in getting your loved ones’ attention especially when you’re talking. Aside from the external factors of noise, make sure to also actively listen and acknowledge the things your patient says. Listening (not hearing) matters when dealing with people with HD.

Huntington’s disease requires specialized care and dedication. By learning more about the disease, its conditions, symptoms and effects, you can provide better quality care to those diagnosed with it. Discover more caregiving advice about HD by participating in online communities that provide support for caregivers who are taking care of particular cases. Also, make sure to have your patient covered with long term care insurance – you and your loved one need all the help available to face brain disorders together.