Huntington’s Disease Care

Learn about Huntington’s Disease, Finding Care, and Memory Care Cost and Coverage.

Barbara Field Barbara Field Senior Writer and Contributor
Scott Witt Scott Witt Elder Home Care Managing Partner

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If you have a family member with Huntington’s Disease (HD), you know how heartbreaking it can be to see their mental and physical state deteriorate right in front of you. According to the Huntington’s Disease Society of America, about 41,000 Americans are symptomatic and fighting the disease right now, and approximately 200,000 are at risk of inheriting the disease.1 Finding the right care for these patients is crucial because many times they require more care than can be provided at home.

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.

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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.

Did You Know?

Did You Know? A blood test can determine whether someone carries the HD-causing gene mutation. Additional assessments—like symptom evaluation, family history, and neurological exams—help determine the stage, onset, and progression of the disease.

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, many times the patient can no longer walk or speak. Choking becomes a major concern. Complications that come along with Huntington’s Disease can ultimately lead to a patient’s death.

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.

Pro Tip:

Pro Tip: Learn more about assisted living vs. memory care from our comprehensive guide. It’s helpful to know what these popular long-term options for seniors are, as well as their similarities and differences. This guide suggests what to consider when selecting a community and provides cost information. Using this guide could help you determine which might be the best fit for your loved one with HD.

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.2

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As they lose these cognitive abilities and develop speech impairments, it can become difficult to understand our loved ones and rationalize with them. Memory-care facilities that deal with Alzheimer’s and dementia patients are often better equipped to deal with Huntington’s Disease patients because they are accustomed to handling those with mental issues, including those that specifically accompany this illness. They have trained staff who know what to do to keep patients safe and happy.

Some of the programs and services offered by memory care facilities include:

  • Secure environment: Since those at memory care facilities may be at risk of hurting themselves, these facilities often have special locks and other security features in place. These features will often be color-coded to help patients navigate their way and lessen anxiety.
  • Programs to help with behavioral issues: Since depression can affect those with Huntington’s Disease, it’s important to try to improve their mood with activities and programs that keep them active. Memory care facilities know how to do this effectively without overstimulating patients and making them agitated.
  • Care for the entire family: Memory care facility staff realize Huntington’s Disease and other illnesses that impair the brain can take their toll on family members as well. That’s why support services for families are offered through these facilities.

Memory care facilities can usually take care of Huntington’s Disease patients until the very last stages. At that time, patients struggle and sometimes require hospice care.

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. Although the cost will vary from state to state and in each facility, the median cost is $6,500 per month for a one-bedroom room in a memory care facility as of 2024.

Current News:

Current News: In 2024, The Huntington's Disease Society of America (HDSA) allocated more than $2.1 million on its Centers of Excellence, and about $7 million on innovative research aimed at improving drug development and identifying biomarkers for Huntington's Disease.3

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 rent or living costs for a senior staying in a memory care facility. However, services like physician-ordered therapies —physical therapy, occupational therapy and speech therapy— are usually covered. 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. In addition to these benefits, states have the option to provide extra benefits, but it varies on a state-by-state basis. So, be sure to check the guidelines and regulations in your area regarding coverage.4

Long-term insurance plans can also be an option in these situations, as well as any veterans’ benefits you may have.

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:

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

Pro Tip:

Pro Tip: Scientists are making strides every day regarding the disease. For example, UC Davis’s DIMENSION clinical trial is investigating a new drug aimed at addressing cognitive decline in early-stage HD. Most treatments focus on motor symptoms. This study seeks to offer new therapeutic options for cognitive impairment to help those with HD live a better life.5

Citations
  1. HDSA. (2024). Overview of Huntington’s Disease.

  2. NIH. (2024). Huntington's Disease.

  3. Huntington's Disease News. (2023). Huntington’s Society supporting work aiming at ‘effective’ treatment.

  4. ncoa. (2023). What is Memory Care?

  5. UC Davis Health. (2024). Research.

Written By:
Barbara Field
Senior Writer and Contributor
Barbara has worked on staff for stellar organizations like CBS, Harcourt Brace and UC San Diego. She freelanced for Microsoft, health, health tech and other clients. She worked in her early 20s at a senior center and later became a… Learn More About Barbara Field
Reviewed By:
Scott Witt
Elder Home Care Managing Partner
Scott founded Select Home Care Portland in 2009 and has been helping seniors live their best life at home or in their local senior community ever since. As an advocate for seniors, the primary philosophy has been to listen, educate… Learn More About Scott Witt
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