Caring for a Loved One with Huntington’s Disease
May 15 marks International Huntington’s Disease Awareness Day—a time to recognize the resilience of those living with this challenging condition and the unwavering dedication of the families who care for them. At Cambridge Caregivers, a leading private duty caregiving agency based in Dallas, TX, we understand the complex and often overwhelming journey that comes with a Huntington’s disease diagnosis. We’re here to provide compassionate, expert care that brings families peace of mind and the support they deserve.
Understanding Huntington’s Disease
Huntington’s disease is a rare inherited disorder that causes the progressive breakdown of nerve cells in the brain, affecting movement, cognition and behavior. Symptoms typically begin between the ages of 30 and 50, although onset can occur earlier or later. Because HD is genetic, every child of a parent with the disease has a 50% chance of inheriting it.
Diagnosis usually begins when a person—or their loved ones—notice subtle changes in behavior, mood, coordination or thinking. These early symptoms can be mistaken for other conditions, which makes diagnosis challenging. A neurologist may conduct a series of physical and cognitive evaluations, and a genetic test can confirm the presence of the gene that causes the disease. A confirmed diagnosis often brings both clarity and emotional weight as families face the reality of a progressive condition with no known cure.
The Challenges of Caregiving
For family members, caring for someone with Huntington’s disease is both an act of love and a long-term commitment that can stretch over many years. The physical and emotional demands grow as the disease advances.
Daily caregiving for someone with HD may include managing medications, mitigating the risk of falls, assisting with feeding and hygiene, responding to unpredictable mood swings and advocating for appropriate medical care. This high level of responsibility can lead to caregiver burnout, especially when paired with the emotional strain of watching a loved one’s gradual decline.
“You are not just caring for a person – you are carrying the weight of their health care needs and your own. Understanding that it’s OK to rest, reach out for help while understanding the need to take care of yourself is vital to both the caregiver and patient with HD. It is important to know that your strength fuels their hope,” said Sandi Levy, RN, Director of Nursing.
This May 15, on Huntington’s Disease Awareness Day, we recognize the strength of the HD community and recommit to providing the compassionate, professional support every family deserves.
