Care Options
There are a range of care options for anyone with HD or caring for someone with HD to consider. HD Reach can provide you with resources in addition to the ones below and can help you navigate the search and admission process through our Long-term Care Path.
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Adult Care Homes
Residences for aged and disabled adults who may require 24-hour supervision and assistance with personal care needs. These homes vary in size and generally have more than 100 residents.
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Continuing Care Communities
Single-family homes, condos, apartments, or rooms for individuals living independently or needing assistance. These communities usually require a large one-time payment (which can be more than $500,000, depending on the area). The resident pays monthly rent after the one-time fee has been paid. The biggest advantage of continuing care communities is that residents are guaranteed a place in the community’s facilities when they need help.
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Assisted Living Facilities
A long-term care option combining housing, support services, and healthcare. Assisted living is great for people who require assistance with everyday activities.
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Memory Care Facilities
Specialized nursing homes for residents who cannot care for themselves and who have memory problems such as dementia or Alzheimer’s disease.
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Nursing Homes
Residents receive care from skilled nursing and therapy staff to treat, manage, observe, and evaluate their care. Staff typically includes RNs, physical and occupational therapists, speech-language pathologists, and audiologists.
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In-home Care
Home care is care that allows a person with special needs stay in their home. Home care services include personal care, such as help with bathing, washing your hair, or getting dressed.
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Hospice
A team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our family will receive the necessary support to allow us to do so.
Because HD is rare, health care staff may not have a good understanding of the disease and may need help developing or implimenting a care plan. HD Reach has a Health Care Professional Path that provides in-person training sessions to professional caregivers.
Below are helpful resources for planning for long-term care:
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Resource for finding an Aging Life Care Professional in caring for a family member, friend, or yourself, in the area where services are needed.
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Nursing Home Compare has detailed information about every Medicare and Medicaid-certified nursing home in the country. A nursing home is a place for people who can’t be cared for at home and need 24-hour nursing care.
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Online resource developed by the U.S. Department of Health and Human Services that provides information on services and financing long-term care needs.
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The National Respite Locator Service helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs.
When your loved one moves to a residential care facility, your responsibility for him or her doesn’t end there. You will need to continue to advocate on behalf of their best interests. With any potential care options, take a guided tour, ask for ratings or awards for a particular facility, and request references to help ensure you’re helping your loved one make the right decision for years to come.
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Listing of long-term care facilities and description of services they offer.
