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If you have a family member with Huntington’s Disease, 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, there are approximately 30,000 Americans fighting the disease right now with another 200,000 at risk of inheriting the disease. Finding the right care for these patients is crucial because many times they require more care than can be provided at home.
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 30’s and 40’s 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:
When people develop Huntington’s Disease they typically will not experience all of these symptoms at once. 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 the 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.
In the beginning stages of Huntington’s Disease many patients may still be able to be cared for 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 aid that 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, nor is it 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:
Memory care facilities can usually take care of Huntington Disease patients until the very last stages. During this time patients cannot do anything from themselves and sometimes require hospice care.
Memory care facilities typically 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.
Depending on the patient’s condition and what type of care is deemed medically necessary, Medicare may cover a portion of the cost for a memory care facility. This is often decided on a case by case basis, so it’s best to see what your plan may cover for you. Since Medicaid coverage is determined on a state by state basis you need to check the regulations in your area to see what may covered.
Long-term insurance plans can also be an option in these situations as well as any veterans’ benefits you may have.
There are resources available to help you find a memory care facility 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, be sure to start looking early.
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