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Finding Long Term Care

Finding Long-Term Care Options

Care Options for Late Stages of HD 

The symptoms of Huntington’s disease worsen over time. In the last stages of HD, a person will need 24-hour care provided by family members or, in most cases, at a long-term care (LTC) facility. A person may be in late-stage HD for several years, making the decisions around LTC important and difficult.  

When a family wants to delay moving their loved one into a facility for as long as possible, there are helpful services that include having trained assistants come to the home, going to adult day care, and using nursing homes for short stays to provide respite for the family. Eventually, almost all patients with HD will move into a full care facility to provide for all of their needs. 

There are many types of settings offering different levels of care. Ideally, you will find a place that is knowledgeable and experienced with caring for people with Huntington’s disease. Since HD is rare, it’s possible you’ll find a place meeting all of your needs, but lacking information about HD. HD Reach can help provide the ongoing training to the staff through our Health Care Professional Path. 

Some areas have more options than others, so some travel may be involved. HD Reach can provide general information or help you conduct a personalized search with our Finding Long-term Care Path.

Home Care Nursing Bringing a skilled nurse into the home can help when the symptoms of HD progress to a certain point. They can help with preparing healthy meals that are easy to swallow, bathing and bathroom issues, and managing difficult behaviors.
Adult Care Homes and Group Homes Communities have a range of living options from detached homes to apartments. They can provide as much or as little assistance as needed. Most require a large payment when you move in and then a monthly rent.
Assisted Living Facilities Available to live in for long periods of time providing both meals and some assistance with healthcare.
Memory Care Specialized nursing homes caring for people with memory problems.
Nursing Homes A residence providing skilled nursing and therapy staff. Their trained staff may provide medical care, occupational therapy, speech therapy, and physical therapy.
Hospice Care Hospice Care will help guide the family and the person who is dying through the end of life emphasizing comfort and dignity. Hospice Care can be provided wherever the person is – at home, in a hospital, or in a long-term care facility.