What you need to know

Are you a carer?

A carer is someone who looks after a family member, partner or friend who is in need of support because they are ill, frail or have a disability.

Many people don't think of themselves as a 'carer'. However, the term carer means someone who provides unpaid support to someone with Parkinson's disease.

Sometimes children can be involved in supporting a family member with Parkinson's, either alone or along with other family members, and may be called 'young carers'. In some families, although the young person may not provide support directly, the effects of Parkinson's disease may mean they could benefit from additional support.

Acknowledging feelings

It takes time and support to adjust to the effects of a condition that affects you, your family and friends' lives. How you are affected and feel will depend on your own individual circumstances. There are many professionals who can help to promote the wellbeing and quality of life for the person you care for.

It is quite normal for a carer to feel many of the same feelings that the person with Parkinson’s may be experiencing. It can be challenging if you and the person with Parkinson's are at different stages in coming to terms with the diagnosis. Like any disability or chronic condition, Parkinson's is something that people can learn to live with. In the early stages, your life may not be affected very much at all. As Parkinson's develops, it be necessary to make changes in your life to adapt, and it is a good idea to plan ahead where you can.

Caring can be stressful, and some sources of stress are easier to carry than others, but it is very important to look after your physical and mental health. Whatever support you provide, it is important to make sure you have support too. Take time for yourself, your health and your quality of life.

Thinking about money

It is important to make sure that you are receiving all money you are entitled to, as it can help to improve quality of life. Not all benefits are means tested and it is important to seek further information and advice about what is available to you.

If you do have any worries about money it is important to talk about them and seek specialist advice and support. There are organisations that can help and support you to improve your financial situation. This can help to relieve stress for both you and the person with Parkinson's disease.

The Society has a range of information, including Rights and Benefits information sheets, as well as other sources of advice open to you such as our freephone Helpline

Listed below are details of organisations that may also be able to help.

Useful contacts

Benefit Enquiry Line

Tel: 0800 882200

Carers UK

20 Great Dover Street
London SE1 4LX

CarersLine: 0808 808 7777 (Wednesdays and Thursdays only 10am-12noon; 2pm-4pm)

Tel: 020 7378 4999

Email: info@carersuk.org

Citizens Advice Bureau

Myddleton House
115-123 Pentonville Road
London N1 9LZ

Tel: 0870 126 4010
Email: info@nacab.org.uk