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Carer information

Professional information


Who is a carer and what do they do?



"I'm still his husband first and his carer second. It's what I do and why I do it that matters"


  • §The term ‘carer’ is used to describe anyone who is looking after or providing support to someone who is ill, elderly or disabled. Most commonly this is a close relative, friend or neighbour.
  • §Some people prefer to see themselves solely as a partner, son or daughter, or other relative and dislike being called a carer. However the term can help some people and is widely used by professionals. It can help to separate the practical job of caring, from the relationship with the person cared for.
  • §When someone first develops Parkinson’s disease (PD) they may need a lot of emotional support and encouragement from those close to them.This is one aspect of caring. As the condition progresses, more practical advice and hands-on care will need to be provided.
  • §People become carers for different reasons. Some people become carers without realising it, as their relative’s PD progresses and they become more dependent. If people end up doing caring tasks that they resent, then frustration and guilt develop and nobody benefits.

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  • §It is vital that carers decide what they are and are not prepared to do at an early stage, so that if necessary alternative solutions can be explored. Caring alone at home is not always the best option for carer or cared for.
  • §Caring for someone can be very rewarding. However, it can also be physically and emotionally demanding and affects work, home, family life and free time. In order to maintain their own health, carers need to ask for help and time off from caring.
  • §Being a carer does not mean taking over everything. It is important that the person being cared for is encouraged and allowed to do as much for themselves as possible. This will help to maintain their independence and dignity.

The Parkinson’s Disease Society (telephone 020 7931 8080) can provide information and support to carers http://www.parkinsons.org.uk

Useful books include:

Caring for the Parkinson’s patient: a practical guide’ by Thomas Hutton, Ray Lynne Dippel and Nathan Slewett (editors), published in Prometheus Books; 2nd edition1999 ISBN: 1573926841

Useful websites include:

National Parkinson Foundation: Caregivers Forum

Caregiver survival resources

Care directions - UK internet guide to care and rights of elderly http://www.caredirections.co.uk

This site has been established for the dissemination of information. While every effort is made to ensure that information on this site is accurate and current we accept no liability for any omissions or inaccuracies that may have crept in. If in any doubt please contact your doctor for further advice.

Last Modified 13 August 2004
Maintained by Matthew Harris