Huntington’s Disease - LPNI
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Huntington’s Disease
Health Topic – May 2019
Huntington’s Disease
Huntington’s disease (HD) is a neurological condition caused by the inheritance of an altered gene. It is a complex and severely debilitating disease, for which there is no cure. The death of cells in certain areas of the brain results in gradual loss of cognitive, physical and emotional function. The most common symptom is chorea, which usually starts as mild twitching and gradually increases over the years. A person with HD may also have difficulties with speech, swallowing and concentration. We see more and more people needing end-stage care in our aged care facilities.
The nursing implications for the care of a person and their family with HD are complex and challenging. Most people live in the community with support until the symptoms become too difficult to manage at home. The progress can be as long as 25 years from diagnosis to death. Because it is a genetic disease, there are implications for the family too.
There is no typical person with HD. Each individual has complex, unique needs. Some needs can be met easily. Others require clever or creative solutions. Still others will require an ongoing trial-and-error approach.
The basic principles to guide any interventions we as health caregivers undertake are:
1. The client is entitled to the best quality of care.
2. Everyone is entitled to a sense of hope for a better life.
3. The client is the centre of our care.
4. We as caregivers must be flexible and innovative, and always keep an open mind.
5. Value your own style in what you do, but also value that of others. Your personality is your most valuable asset, so use it.
Caring takes precedence over curing, enabling as close to normal and enjoyable life as is possible, encompassing wholistic care and balance. People with HD are capable of using abilities they already have and of learning new skills. Often a structured routine is needed, and this needs to modified as the disease progresses. One major difficulty is the loss of power, autonomy and control. When life has slowly changed so much over movement and ability to attend their personal care leading to their being totally dependent, this brings out behaviours that can be challenging. Being aware of this and working with the person and their family around this is so important.
In the advanced stages of the disease, cognitive changes and impairments, reasoning, judgement, emotional engagement and sense of timing may all be affected. This means that the way the person behaves and responds may be unreasonable. It is worth making a plan for behaviour management. It is important that all carers consistently stick to the devised plan. For example, time for coffee or a cigarette may be regimented to particular times and no more, no matter how much they ask. Stick to the agreed plan!
Following are some links for ideas on how to look after someone with advanced HD. We can also use many of these tips as we look after people living with other neurological conditions.
Angela Uhrhane, Pastoral Care Nurse
Lutheran Aged Care Albury, NSW, Australia