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. Unfortunately, there is no cure for Huntington’s Disease. If you have a parent who has it, you have a 50/50 chance of also carrying the gene.

Many people with Huntington’s Disease start getting symptoms in their 30s and 40s but may not fully develop the disease until they are older. It is described by many as having ALS, Parkinson’s Disease, and Alzheimer’s Disease all at once.

The symptoms of Huntington’s Disease include:

• Memory loss and impaired judgment
• Mood swings and personality changes
• Slurred speech and trouble finding the right words
• Difficulty swallowing
• Significant weight loss
• Slow eye movements
• Involuntary jerking movements

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

They typically start with subtle changes like having a hard time thinking through problems or experiencing involuntary movements. They may also be in a bad mood more often and feel depressed. While a doctor may prescribe medicine to control depression or mood swings, there is not much else that can be done at this stage as there are no drugs to control the progression of the disease.

As the disease progresses, daily activities and even everyday job activities may become more difficult to do. Occupational and physical therapists may help with movement issues and completing everyday tasks. Speech pathologists may also be able to help 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. Many times the complications that come along with Huntington’s Disease are what 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. Also, memory and speech may be affected more and lead to other problems. At this point, an assisted living facility or memory care facility may be needed.

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. Many times patients lose their reasoning abilities along with speech impairments. This can make it difficult to understand them and rationalize with them.

Memory-care facilities that deal with Alzheimer’s and dementia patients are better equipped to deal with Huntington’s Disease patients because of common mental issues that accompany the illness. They have trained staff who know what to do to keep patients safe.

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. They are also usually 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 can 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 facilities 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. During this time patients cannot do anything for themselves 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, it can cost an average of $5,000 a month for a one-bedroom room in a memory care facility.

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. This is often decided on a case-by-case basis, so it’s best to see what your plan may cover. Since Medicaid coverage is determined on a state-by-state basis you need to check the regulations in your area to see what may be covered.

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?

Resources are available to help you find a memory care facility 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 also use the resources below.

• Eldercare Locator
• Leading Age Aging Services Directory

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