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Symptoms such as involuntary movements may be eased with medication. Depression and anxiety can be treated with medication. Some people find talking therapies and cognitive behavioural therapies are helpful, and many people find talking to others in a similar situation, comforting and helpful. The HDA specialist advisor is able to facilitate this through support groups or an online message board.
So, most people are keen to remain in their own homes for the duration of the disease, however, following cognitive changes they might need support with tasks of everyday living and personal care. They may need prompting and guiding to complete tasks, support around tasks that cause anxiety, help to prepare an adapted diet and monitoring when eating to avoiding choking. As the disease progresses, care needs increase and should be re-assessed regularly. The importance of routine and continuity of care is paramount with those with Huntington's, as they find any changes difficult to cope with.
Generally, Huntington's disease may be divided into five broad stages. One, the early stage, the person is diagnosed as having Huntington's and can function fully both at home and at work. Early intermediate stage, the person remains employable but maybe at a lower capacity. He or she is still able to manage daily affairs despite some difficulty. Late intermediate stage, the person can no longer work and manage household responsibilities. He or she needs considerable help or supervision to handle daily financial affairs. Other daily activities may be slightly difficult that may be managed with some minor help. Early advanced stage, the person is no longer independent in daily activities, but is still able to live at home supported by the family or professional carers. Advanced stage, the person requires complete support in all daily activities, and professional nursing care is usually needed either in the person's own home or in a care home environment. A person may have little verbal communication at this stage but be able to understand everything that is said to them.
These stages can fluctuate according to the health and lifestyle of the person. Infections such as chest or urine may exacerbate symptoms and cause a rapid deterioration in the condition, which may revert to the former stage once treated. But it must be borne in mind that everyone with Huntington's disease is very different and will experience a different pathway and time-scale, as well as variation in the symptoms.
In the last stage of Huntington's disease, people are likely to be chair or bed-bound, or will be unable to weight bear. They will now have great difficulties swallowing and they maybe PEG or risk-fed. They will have difficulty with verbal communication, and it may be that they can only communicate with non-verbal signs. They might have a significant cognitive decline. They will need assistance with all their daily activities.
Issues to bear in mind at end-stage Huntington's disease, with regard to the motor symptoms; the chorea will often decline in the end stages but stiffness, dystonia and rigidity will become more marked. With regards to behaviour, they often have extreme anxiety and agitation with screaming and aggression. Pain can often be an issue, but it is very difficult because of the cognitive and speech changes, to establish where the pain is. They may be incontinent of both urine and faeces and they may have temperature dis-regulation, so they will often feel very hot and be very sweaty and will need to... The room will need to be managed, to manage that temperature.
They often have hyper-salivation which means they will drool and over salivate, which increases the risk of choking and it can be managed with patches with atrophy. They may have nausea and vomiting occasionally and they may have seizures - that is not uncommon in juvenile Huntington's disease, but it is less common in adult Huntington's.
So the end of life brings many emotions to people. Someone recently said to me, "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."
