Huntington’s Disease

Huntington’s Disease is a progressive, incurable disease. ICCM tailors its care inputs for every individual to meet evolving care needs so as to maximise the clients’ quality of life and independence for as long as possible.

Huntington’s Disease is hereditary. Generally, though not always, it develops in adulthood, and it can affect both men and women. It damages nerve cells in certain parts of the brain, causing loss of function in these areas. This can affect movement, cognition (perception, awareness, thinking, judgement) and behaviour.  Huntington’s Disease is a “progressive” disease, which means it gets worse over time and in the later stages, full nursing care and support is often needed. There is currently no cure, nor any way to slow down or reverse the progression.

                         

People living with Huntington’s Disease have to cope with many symptoms. Physically, they need to keep up their current skills and mobility as long as possible, and to learn new skills to help cope with the disease as it progresses.  Psychologically they need help to manage their emotional and behavioural symptoms, which can be just as distressing. And as Huntington’s Disease is a progressive disease, care plans need to be very flexible, so they can evolve and change with the client’s needs. Anticipation, and planning for the future is critical to supporting people with Huntington’s Disease.

 

ICCM’s approach:

  • Client and family care support
  • Dynamic care planning and risk assessment to meet changing needs
  • Close liaison with local Multi-Disciplinary Team including palliative care
  • Specialist input supporting psychological, behavioural and emotional needs
  • Specialist training to incorporate specific care needs, e.g. PEG feeding, NIV, moving and handling
  • End of life care
  • Care and support of immediate family