Huntington’s disease (HD), with its debilitating emotional, behavioural and physical symptoms, puts a great strain on individuals and families. However, there’s help available, and physiotherapy, occupational therapy and speech therapy can ease the strain of the condition, improve coping skills and make daily living easier.
While someone with HD relies on a team of health professionals, it’s usually the family who will care for that person day to day.
Given the physical and mental deterioration caused by HD, caretaking can be extremely challenging. People with HD generally become unemployable, which has financial implications for the family. They may not be able to perform simple household chores without detailed instructions and supervision, or eventually at all. Activities like bathing, dressing and eating may become too difficult for them to do on their own.
This is tiring for the carer, but also damaging to the patient’s sense of self-worth and inclusion in the family. It’s important to find ways for them to remain as useful and independent as possible, for as long as possible. Look for small tasks that the person with HD can do easily and might enjoy.
Addressing depression and difficult behaviour
Depression, often characterised by apathy, withdrawal, mood swings and changes in appetite, is common in HD and should be addressed. Psychotherapy and medications may be needed.
Make sure the person has social contact and opportunities to take part in activities outside the home. It’s very important for people with HD to walk and exercise as much as they can, for as long as they can. Try a daily exercise regime, and make your home and environment safe and easy to negotiate.
Someone with HD may display difficult or even aggressive behaviour, especially if they can’t communicate their needs verbally. They may become paranoid or divorced from reality. They may also have difficulty gauging appropriate emotional levels, and lash out in irritation or anger. If this reaches a point where you fear for the safety of yourself, the patient or others, get professional help urgently. In some cases, it may be necessary for the person to be looked after in a care home rather than by family. Medications may be needed to control serious behavioural problems.
If it’s a parent who falls ill, children may take on an overly responsible role in the family. Younger children may be neglected or even feel abused. If these problems become severe, then family counselling may be necessary.
Although your loved one with HD may have changed completely from the person they used to be, they’re still deserving of care, dignity and quality of life. Always remember that the person has no control over their reactions: they’re not being stubborn or consciously choosing to be aggressive, forgetful or disorganised.
If you’re a caregiver, make sure also to look after yourself: find living arrangements that work for you and your family. As HD is a fatal illness, it’s vital to resolve legal, financial and end-of-life issues early on. This will be a reassurance and comfort for both you and your loved ones.
Stubbs, B. The Role of the Physiotherapist in HD, Newsletter, June 2007, HD Association, UK. Pipathsouk, A. Physical Therapy and HD Treatment and Management, HOPES. Caring for People with HD; Searle, J. Communication Strategies for those with HD; and Dubinsky, R. Home Safety in HD, Kansas University Medical Center. National institute of Neurological Disorders and Stroke, www.ninds.nih.gov. Huntington’s New South Wales, www.huntingtonsnsw.org.au. HD Society of America, www.hdsa.org