Course Description:
This course is designed to equip both formal and informal caregivers of individuals with Huntington’s Disease (HD) with the essential knowledge and skills for providing comprehensive care. While each Huntington Academy course focuses on a specific aspect of HD care provision, it’s important to recognize that HD challenges should be approached in a holistic way. As a result, many of the Huntington Academy courses are interconnected, with overlapping content that reinforces a comprehensive approach to care.
This course provides an in-depth overview of HD, its causes, symptoms, disease stages and available treatments. It covers the importance of early diagnosis, specialized care, and genetic counseling. It also addresses the unique challenges of juvenile HD. The course emphasizes the critical role of caregivers—both informal and formal—in managing HD’s complex impact, while developing essential skills such as patience, empathy, and adaptability. Participants will also explore the need for a multidisciplinary, holistic approach to HD, and current strategies to manage symptoms.
Course Objectives:
By the end of this course, participants will be able to:
- Understand the progression of HD and its motor, cognitive, and psychiatric symptoms.
- Recognize the unique challenges of juvenile HD and the distinct caregiving strategies required for younger individuals.
- Explain the importance of a thoughtful approach to HD genetic testing and the role of genetic counseling in facilitating decision-making.
- Identify the key caregiving skills necessary to manage HD, including patience, empathy and adaptability.
- Navigate the emotional, physical, and financial challenges faced by individuals with HD and their families.
- Understand the four stages of HD and the corresponding challenges and care strategies of each stage.
- Explore the role of caregivers in supporting individuals with HD.
- Recognize the need for multidisciplinary care to manage the complex challenges of HD.
- Stay informed about the latest advancements in HD research and evaluate current and potential future treatments for HD.
- Gain insights from personal testimonies of HD family members and healthcare professionals to better understand the human impact of HD and effective care strategies.
