Finding care in a Long Term Care facility:


For many caregivers of people with HD, there comes a point where caring for your loved one at home is no longer possible.  This can be due to many reasons, including being unable to dedicate the time to care or coordinate care for your loved one, being unable to manage the complex needs of caring for your loved one, or being burnt out from the caregiving process.  It is at this point that many people start looking into the option of placing their loved one in a Long Term Care facility.  Below are some suggestions and resources.  For more information on Long Term Care or to be connected to local resources, please feel free to contact the HDSA National Helpline at (800) 345-HDSA or


  • Plan Ahead
    • Many Long Term Care facilities are unfamiliar with HD and may deny admission to people with HD for various reasons.  Because of this, it can take many months to find an appropriate Long Term Care placement.  It is important to start the search early and  visit the Long Term Care facilities in your area.  Talk to your loved one about what their care needs are and what type of facility would be realistic.  Having these discussions  and planning early can help make the process easier.


  • Ask for Help
    • HDSA has social workers around the country who have experience and expertise in finding Long Term Care placement for people with HD.    Your local social worker can also provide education and information on Huntington’s disease and caring for people in LTC facilities.  Reach out to your local social worker today to find out how they can help!  Click here to find your local social worker.