Fact 8: Late-stage Huntington’s Disease – A Time of Increased Dependency
As HD progresses into its late stages, the disease significantly intensifies. Individuals may become completely dependent on others for their care. They might lose the ability to walk, speak, and swallow, making professional care an absolute necessity.
Despite their cognitive decline, many patients retain awareness of their surroundings until the late stages. This retention, while valuable for maintaining connections with loved ones, can also increase emotional distress as patients grapple with their increasing limitations.
At this stage, comfort becomes a paramount concern. It’s about ensuring the patient’s needs are met with compassion, respect, and dignity. This might include managing symptoms with medication, providing nutritional support, and ensuring the patient is as comfortable as possible.
End-of-life care for someone with HD requires a supportive and understanding network of healthcare providers and caregivers. This team works together to meet the physical, emotional, and spiritual needs of the patient, providing comfort, alleviating suffering, and maintaining quality of life to the best extent possible. (8)
