A positive HD result may change your life in many different aspects, e.g. deciding whether to have children, planning for the future, rethinking priorities, negotiating appropriate housing, etc. It may also make mortgages, health and life insurances difficult. Therefore, individuals at risk of HD are advised to make decisions on long-term care insurance before definitive diagnosis and development of symptoms.

HD will gradually affect your ability to live an independent life. Working, social activities and general daily activities will become increasingly difficult to perform. As the disease progresses, you may become more dependent on help and support from relatives, health and social care professionals.

This can be a very sensitive issue. In some countries you may have to inform the driver licensing authority if you have a medical condition which affects your ability to drive. People who are in the early stages of the disease are sometimes given licenses which can be reviewed on a regular basis.

Most HD patients and their carers perceive behavioural symptoms as more distressing than motor and cognitive impairments. This comprises particularly depression, apathy, anxiety, irritability and obsessive-compulsive behaviours. In addition, cognitive impairments may change daily life to a great extent. HD affects certain regions of the brain which are normally responsible for planning ahead (executive functions) and concentrating on more than one task at the same time (cognitive flexibility). Consequently, HD patients may become overloaded with tasks or have difficulty dividing attention and adapting to changing situations. Moreover, altered sleep patterns may affect family life, either due to sleeplessness during the night or sleepiness during the day.

Efficient strategies to cope with HD have to be drawn individually, depending on the affected person, the stage of the disease and the family context. HD develops very gradually, so that in general there is time to adapt to the changes caused by the disease. A better understanding of the behavioural and cognitive impairments may help developing strategies to accommodate these changes and to maintain a warm relationship with people suffering from HD. You can also get important information and valuable advices from both HD specialists and lay organisations from your respective country.