Huntington’s Disease Care

What Is Huntington’s Disease?

Huntington’s Disease is a fatal genetic disorder that affects nerve cells in the brain. It breaks them down and causes mental and physical impairments. If you have a parent who has it, you have a 50/50 chance of also carrying the gene. Unfortunately, it’s not yet possible to repair the mutated gene for Huntington’s Disease.

Many people with HD start getting symptoms in their 30s and 40s but may not fully develop the disease until they are older. There are instances of cases in juveniles, but these are rare. Many have described it as being like having ALS, Parkinson’s disease, and Alzheimer’s disease all at once.

What are the Symptoms of Huntington’s Disease?

How do you know the signs? The common symptoms of Huntington’s Disease include:

• Memory loss and impaired judgment
• Mood swings and personality changes
• Slurred speech and trouble finding the right words
• Challenges learning new things
• Difficulty swallowing and eating
• Problems walking
• Significant weight loss
• Slow eye movements
• Involuntary jerking movements

When people develop HD, they typically will not experience all these symptoms simultaneously. The symptoms will progress and ultimately get worse as time goes on.

What are the Stages of Huntington’s Disease?

Those with the disease typically start with subtle changes like struggling with driving, having a hard time thinking through problems, or experiencing uncontrolled movements. People in the early stages may be irritable and feel depressed. Doctors can prescribe medicine to suppress those involuntary movements and control depression or mood swings. No drugs are available to date, however, that can limit the progression of the disease. They can only provide symptom relief.

As the disease progresses and becomes more severe, daily activities and even everyday job activities may become more challenging. Occupational and physical therapists may help with movement issues and completing everyday tasks. Speech pathologists may also assist with trouble speaking and difficulty swallowing.

During the final stages of Huntington's Disease, patients often lose the ability to walk or speak independently. Choking becomes a significant concern as swallowing difficulties worsen. Complications associated with Huntington's Disease can ultimately be life-threatening.

How Do I Care for Someone with Huntington’s Disease?

In the beginning stages of Huntington’s Disease, many patients may still be able to receive care at home. They will likely need help doing daily activities and may have mood swings or depression that need to be addressed. A home nurse or health aide who can come in a few hours a day may be an option at this point.

As the disease worsens, you’ll begin to notice that at-home care is no longer feasible or safe. When involuntary movements become more frequent, there is a chance the patient can get hurt. The physical changes you may notice might include difficulties with swallowing, eating, and especially walking. Those with Huntington’s Disease may lose weight or struggle with sleeping. Over time, the person will likely need to remain in bed or make use of a wheelchair.

Choosing Assisted Living and Memory Care Facilities To Help

Memory and speech may be affected more and more, leading to other serious issues. You might notice slurred speech and confusion. At this point, an assisted living facility or memory care facility may be needed.

Keep in mind, many families opt for a memory care facility over an assisted living facility because of the many cognitive impairments that come along with Huntington’s Disease. According to the National Institute of Neurological Disorders and Stroke, those with Huntington's Disease can exhibit problems related to attention, judgment, problem-solving, and decision-making.

How Much Does Huntington’s Disease Care Cost?

Memory care facilities cost more than nursing homes or other types of facilities because of the extent of care that is provided. The cost will vary from state to state and in each facility, and rates vary significantly by location and level of care required.

Does Insurance Cover Memory Care?

Depending on the patient's condition and what type of care is deemed medically necessary, Medicare may cover a portion of memory care costs. Medicare doesn't cover room, board, or custodial care costs in memory care facilities. However, services like physician-ordered therapies, such as physical therapy, occupational therapy, and speech therapy, are typically covered under Medicare Part B. Prescription drugs, durable medical equipment, and outpatient health services are also likely covered.

It's best to check the details of your specific plan. Medicaid coverage might also be available to you. Some Medicaid benefits are federally mandated, while states have the option to provide additional benefits through Home and Community-Based Services (HCBS) waivers, which can help cover memory care costs. Coverage varies significantly by state, so be sure to check the guidelines and regulations in your area regarding coverage.

Long-term care insurance plans can also help cover memory care expenses, depending on your policy details. Veterans and their spouses may qualify for Aid and Attendance benefits through the VA, which can provide additional financial assistance for memory care.

How Do I Find Huntington’s Disease Care?

If you seek a support group, contact the Huntington’s Disease Society of America. They have in-person and online support groups for those with Huntington’s Disease, as well as their family members.

For resources to help you find a good memory care facility near you for a Huntington’s Disease patient:

• You can call our senior helpline or use our directory search feature to find out where memory care facilities are located in your area.
• You can check out the Eldercare Locator from the Administration for Community Living.
• You can also look into the Leading Age Aging Services Directory. This is a group of nonprofit aging services providers and other mission-driven organizations that serve older adults.

Remember, it may take time to find the right facility, so if you anticipate needing a memory care facility, start looking early.