Occupational therapy (OT) can help people with Huntington’s disease maintain independence for as long as possible and adapt to worsening symptoms as the disease progresses.
Huntington’s disease is a neurodegenerative disorder that causes the progressive loss of nerve cells in the brain. As cells in different parts of the brain are lost, people with Huntington’s disease may experience issues related to movement and balance, as well as the ability to think and process emotions.
OT is a form of healthcare that focuses on helping people maintain or regain the ability to complete their regular daily activities. The goal of OT is to consider how a person interacts with their environment and give them the skills and tools they need to continue those interactions as long as possible while the disease progresses.
This article examines some of the common challenges people with Huntington’s disease may experience and the various ways that OT may help.
People with Huntington’s disease may experience a variety of changes in their physical and mental health. Not all symptoms will appear at once, but they may gradually increase over time as the disease worsens.
Physical symptoms of Huntington’s disease may include:
- loss of motor control
- poor balance
- involuntary movements
- difficulty speaking or swallowing
- loss of energy
In the later stages of the disease, some people may require a walker, wheelchair, or other mobility aid.
Cognitive symptoms of the disease include difficulties with:
- decision making
- paying attention
- remembering or learning new things
As Huntington’s disease progresses, dementia and psychiatric symptoms can occur. Behavioral changes are also common, including mood swings, irritability or anger, apathy, depression, and social withdrawal.
Some common difficulties associated with Huntington’s disease include:
- increased risk for falls
- difficulty driving
- weight loss, choking, or chest infections due to difficulty eating
- loss of ability to work or complete household chores
- personal hygiene challenges
- difficulty handling money or finances
- organizational challenges
- suicidal thoughts
In the early stages of the disease, these symptoms are mild, and most people can continue their regular activities with minimal interruptions. However, as Huntington’s disease progresses, these changes may interrupt a person’s ability to complete their daily activities and can affect their ability to live independently.
In OT, people with Huntington’s disease can work with their occupational therapist and family to maintain their independence as long as possible. A person’s individual needs and symptoms should inform their therapy.
As with physical therapy, OT can help a person work on building their physical strength and ability to move, but potential benefits also expand beyond that. In OT, people with Huntington’s disease will learn new ways to interact with their environment based on their abilities to minimize challenges and avoid risks to their health.
For people with Huntington’s disease, an occupational therapist may help:
- create new approaches to getting dressed or preparing meals
- develop strategies to help with organization and planning
- advocate for oneself at work
- build motivation and adjust to changes in energy
- identify tools to support mobility or daily tasks
- plan home adaptations to adjust to a person’s changing needs
OT practices depend on the individual needs of the person receiving treatment. Therefore, goals and interventions will change over time.
In the early stages of Huntington’s disease, the goal of OT is often to help a person maintain their daily activities and functionality as it relates to self-care, productivity, and leisure. Therapists may help with:
- establishing a daily routine
- giving tips for staying organized
- developing strategies for remembering things
- creating a safe environment in the home to prevent falls or injuries
- enabling loved ones to be a part of the care team
In the middle stages of Huntington’s disease, the goal of OT is often to adapt to limitations that already exist. A person may need more assistive devices, and many people may have more reliance on care partners to accomplish daily tasks. Safe eating, maintaining hygiene, and getting dressed independently are likely to become priorities.
As the disease progresses, occupational therapists can help care partners with concerns related to pain management and avoiding injury.
As the disease affects so many aspects of a person’s health and well-being, a variety of professionals may help care for people with Huntington’s disease. In addition to neurologists, occupational therapists, and physical therapists, people with Huntington’s disease and their care partners may receive additional support from:
- psychiatrists and psychologists
- social workers
- genetic counselors
- speech therapists
- employment services
- day care centers
An occupational therapist specializing in Huntington’s disease can likely refer someone to other healthcare professionals and helpful resources.
People with Huntington’s disease experience many changes to their physical and mental health as their disease progresses, which can affect their ability to complete daily tasks. As these symptoms worsen, people may lose their independence, and the likelihood of injury or illness increases.
OT can help people with Huntington’s disease and their care partners adapt to their changing needs over the course of their disease. As part of a multidisciplinary approach to Huntington’s disease care, OT helps people navigate their changing world and maintain their physical, emotional, and social health.