Managing Symptoms and Stages of Huntington's Disease

Symptom Management

Various symptoms of Huntington's disease can be managed with appropriate treatments:

Medication

Involuntary movements may be eased with specific medications. Similarly, depression and anxiety can be treated with medication.

Therapies

Talking therapies and cognitive behavioural therapy (CBT) can be beneficial for managing emotional and cognitive symptoms. Many individuals find it helpful and comforting to talk to others in similar situations. The Huntington's Disease Association (HDA) specialist advisor can facilitate this through support groups or an online message board.

Support at Home

Most individuals with Huntington's disease prefer to remain in their own homes throughout the course of the disease. However, as cognitive changes progress, support with everyday living and personal care may become necessary. This support may include:

• Prompting and Guiding: Assistance with completing tasks and managing activities that cause anxiety.
• Adapted Diet: Help with meal preparation and monitoring to avoid choking.
• Routine and Continuity: Maintaining a consistent routine is crucial as changes can be challenging.

As the disease advances, care needs will increase and should be reassessed regularly.

Stages of Huntington's Disease

Huntington's disease is generally divided into five broad stages:

1. Early Stage

The individual is diagnosed but can function fully at home and at work.

2. Early Intermediate Stage

While still employable, the person may function at a reduced capacity and manage daily affairs with some difficulty.

3. Late Intermediate Stage

The person can no longer work or manage household responsibilities and needs significant help with financial and daily activities.

4. Early Advanced Stage

Independence in daily activities is lost, but the person can still live at home with support from family or professional carers.

5. Advanced Stage

The person requires complete support for all daily activities, often necessitating professional nursing care either at home or in a care facility. Verbal communication may be minimal, but understanding can remain intact.

Fluctuations and End-Stage Considerations

The progression through these stages can fluctuate based on health and lifestyle. Infections or other factors may cause a rapid deterioration in symptoms, potentially reverting to an earlier stage once treated. Each individual's experience and timeline with Huntington's disease can vary significantly.

End-Stage Symptoms

In the final stages of Huntington's disease, individuals may:

• Mobility Issues: Be chair or bed-bound and unable to bear weight.
• Swallowing Difficulties: Experience severe problems with swallowing, potentially requiring PEG or risk feeding.
• Communication Challenges: May only communicate through non-verbal signs and experience significant cognitive decline.
• Motor Symptoms: Chorea may decline, but stiffness, dystonia, and rigidity can increase.
• Behavioural Issues: May include extreme anxiety, agitation, aggression, and difficulties in pain localisation.
• Incontinence and Temperature Regulation: May experience incontinence and temperature dysregulation, requiring careful room management.
• Excess Salivation and Other Symptoms: Hyper-salivation can increase choking risk, and occasional nausea, vomiting, or seizures may occur.

Emotional Aspects of End-of-Life Care

End-of-life care in Huntington's disease often evokes strong emotions. As one individual shared, "Although I knew he was very ill with Huntington's and had battled the illness for years, when the end finally came, it was still a shock. I had lost my husband several years ago, so when he actually died, I felt I had already grieved for him and only felt a sense of relief."