Although tens of thousands of people live with Huntington’s Disease (HD), only a few hundred beds are available at dedicated HD facilities. This limited availability can make it daunting to find the right home for your loved one. When you do find an open space, you want to make the best health and well-being decision possible.
Recognized Care Centers
The first step is to find a center with recognized expertise in Huntington’s Disease or neurodegenerative disorders. These centers have proven experience in providing care that manages symptoms and supports a higher quality of life.
ArchCare’s Center for Neurodegenerative Disease in Manhattan and Rhinebeck specializes in caring for patients with Huntington’s, ALS, and similar conditions. Their deep understanding of neurodegenerative diseases helps your loved one receive the physical and emotional support they need at each stage of disease progression.
Interdisciplinary Care Teams
Huntington’s Disease progresses differently for everyone. With this level of complexity, you need to rely on a team. Interdisciplinary care teams can address symptoms and complications by collaborating on-site with a primary care provider. Your ideal care team includes:
- Neurologists or movement disorder specialists for chorea progression
- Psychiatrists for behavioral and emotional support
- Internal medicine physicians for general health management
- Physical and occupational therapists to maintain mobility and independence
- Speech and language pathologists to address communication and swallowing issues
- Nutritionists/dietitians to support proper nutrition and weight management
- Social workers for family, resources, and emotional support
- Recreational or art therapists to increase the quality of life with structured, meaningful activities
- Adaptive equipment specialists to prevent falls, increase mobility, and give you easy access to finding what you need
This team-based approach makes sure your loved one receives well-rounded care that addresses both physical and mental health needs.
Psychiatric and Behavioral Management
As HD progresses, patients may experience significant emotional, mental, and behavioral challenges. It’s important to choose a facility that offers psychiatric and behavior management services on-site. A strong care plan for managing mood swings, irritability, depression, and cognitive decline can significantly improve the quality of life for both the patient and their family.
Family Support Services
Caring for a loved one with Huntington’s Disease is a significant emotional and physical commitment. As HD advances, it often requires 24/7 care. This makes it crucial for facilities to provide strong family support services. Look for a facility that offers:
- Access to social workers for emotional and practical guidance
- Pastoral or spiritual care for emotional and spiritual support
- Family collaboration in care
These services help ease the heavy emotional toll on family members.
End-of-Life Care
As Huntington’s Disease reaches its final stages, the right facility will offer compassionate palliative care and end-of-life support. Ask how the facility handles things like hospice services.
When you visit potential facilities, it’s helpful to be prepared and intentional in your evaluation. Our downloadable Huntington’s Disease facility evaluation checklist will help you evaluate each aspect of care including:
- On-Site Services: Availability of essential specialists like neurologists, psychiatrists, physical therapists, and social workers.
- Care Team: Look for a dedicated, collaborative team with expertise in neurodegenerative disorders, including Huntington’s Disease.
- Safety and Quality of Life Measures: What processes does the facility have for symptom management, mobility assistance, fall prevention, and recreational therapy?
- Family Support: How does the facility provide emotional and practical support to family members? Are there social workers and pastoral care available?
This checklist can help you select the facility that will provide your loved one with the most comprehensive, compassionate care.
Overall, the main things to consider as you select the right care facility for your loved one are team experience, quality of life measures, and the availability of specialized care. The more in-depth and inquiring you are in your selection process, the more likely you will experience a positive experience and environment for Huntington’s Disease care.
Contact Us
If your family is considering a facility for Huntington’s Disease care services, please call 855-951-2273 (CARE) or contact us for more information.
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