In the case of Huntington’s Disease, a carer is someone who provides unpaid, ongoing assistance and care to a person with HD. Due to the hereditary nature of Huntington’s Disease, a carer may be looking after more than one member of the family at the same time. A carer can be anyone from a parent, partner, child, sibling, close friend, neighbour or someone in the person’s close social network.
A caregiver’s role is often defined by the needs of the person they are caring for. For example, it can be as simple as regularly assisting someone with their grocery shopping to helping with more complex tasks such assistance with dressing, lifting, showering, and/or toileting, etc.
Currently, there is no medication that can halt or slow the progression of HD. However, research has shown that maintaining an active lifestyle (e.g. regular exercise social connection and mental stimulation) has shown to have a positive impact on the progression of Huntington’s Disease.
Symptom management is the goal of treatment for patients with Huntington’s disease; medication may reduce involuntary movements and emotional disorders for some HD patients.
Physical therapists can assist with early balance and walking problems and provide exercises to build strength. Exercise can also help combat depression.
Occupational therapists can provide strategies to make the home safer and more liveable for someone with HD, suggest ways to improve communication and propose ideas to offset cognitive decline. Some helpful techniques that have worked for caregivers include labelling items around the house (e.g. to indicate the contents of a kitchen cabinet), using lists and notes, maintaining a routine and communicating with short, direct instructions.
Since the ability to communicate continually declines for those who have HD, a speech pathologist may also be particularly helpful at all stages of the disease.
Huntington’s Disease affects metabolism, and patients with HD may burn calories at a much higher than average rate, therefore a high calorie diet may be recommended. Dietitians can assist with changes in diet and meal planning.
Friend’s and family can help by listening,showing empathy, asking questions and spending time with the HD affected individual.
Caregiving can be an emotional roller coaster. Caring for your family member demonstrates love and commitment and can be a very rewarding personal experience.
On the other hand, exhaustion, worry, inadequate resources and continuous care demands are enormously stressful. Due to the complex nature of Huntington’s Disease it is very easy for a carer to quickly burn out and be at increased risk of poor health, depression and social isolation.
It is important for the health of the family caregiver, as well as the health of the person with Huntington’s Disease, to take some time off from caregiving (known as respite), get enough sleep and have a support system of their own.
Respite care can be arranged with the help of family members, friends, volunteer services, independent living centers, social service organisations or home care agencies. Caregivers who make time for them-selves can provide better care to their loved ones.
On a positive note dedicated scientists are working globally on research into understanding the Huntington’s gene better so they can develop more effective treatment for symptoms.
Other scientists are looking into ways to prolong onset of symptoms or halt progression of the disease.
And still other scientists are looking to turn off the expansion of the gene.
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