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Caring for someone with Parkinson's

Colin who has Parkinson's with wife and carer Jackie
We use the word carer to describe anyone who provides unpaid care and support for someone with Parkinson's.

When people first started calling me a carer, I didn’t like it, because I was his partner.

Sue, whose husband Charlie had Parkinson's

You may not think of yourself as a carer, seeing what you do as part of life as a partner, husband, wife, son, daughter, friend or relative. 

But recognising your role as a carer may mean you can claim benefits and access health and social care services that can help you.

Download or order our booklet - The carer's guide.

Your role as a carer

Someone newly diagnosed with Parkinson's may not need any practical help. But it can be important for them to have someone to talk to, for emotional support.

The symptoms of Parkinson's change over time and the care you provide may also need to change. As time goes by and Parkinson's symptoms develop, the person you care for may rely on you more for support. See more about advanced Parkinson's.

It's important to know how to get the support you need with your caring role.

Because of this, it's important to know how to get the support you need with your caring role.

Finding out as much as you can about Parkinson's can help you understand what kind of care is required and how to manage the treatment of Parkinson's.

Our information on how Parkinson's progresses and living with Parkinson's may help when thinking about what the person you care for may need and preparing for changes.

Adapting to Parkinson's

Not everyone with Parkinson's has the same symptoms and they don't appear in a particular order, progress at the same speed or in the same way.

Many people find that how the condition affects them can change from day to day, and even from hour to hour.

I was finding looking after Fran and running a home extremely tiring and challenging.

Geoff, whose wife Fran has Parkinson's

The kind of help the person you are caring for will need depends on how the condition affects them, what daily tasks they find hard and what resources are available to help them.

Many people with Parkinson's stay independent for many years after diagnosis, even if some activities need to be changed to make them easier.

Your attitude can make a big difference to how the person you care for copes with living with Parkinson's.

Remember to:

  • encourage the person with Parkinson's to lead as active and as normal a life as possible
  • allow them to do things for themselves, even if it takes longer
  • take into account that Parkinson's changes a lot and the amount of help they need will vary, not just day to day, but hour to hour - at one time they might be able to do everything, then another time they'll need more help or rest
  • ask what help they want from you
  • not worry if you sometimes get it wrong
  • make sure you have the support you need to help you cope

Parkinson's medication

Parkinson's medication can be one of the biggest concerns of day-to-day life with Parkinson's. Someone with the condition may have a complicated medication regime, taking a number of different tablets each day at specific times.

Being responsible for medication may feel quite daunting, especially as the condition progresses.

Ask for support from your GP, specialist, Parkinson's nurse or pharmacist to get a good understanding of types and timings of medication.

Impulsive and compulsive behaviour

Impulsive and compulsive behaviour is a side effect of some Parkinson's drugs. Although only a relatively small number of people experience this behaviour, it can have a big impact on the person affected and those around them.

Sometimes, people who experience this behaviour may not realise they have a problem. So if you notice anything unusual, it's important you discuss it with a healthcare professional as soon as possible.

Caring for someone with dementia

As with Parkinson's, dementia is a progressive condition with symptoms that change over time.

As with Parkinson's, dementia is a progressive condition with symptoms that change over time.

How quickly dementia develops will vary from person to person and the type of help, support and care the person with dementia needs will also change over time.

More about Parkinson's dementia and dementia with Lewy bodies - including treatment and management, and support for carers and families of people with dementia

Courses for carers

There are courses for carers exploring the practical and emotional issues of daily life, offering opportunities for learning new skills and meeting other carers.

Support from health and social care professionals

There are many health and social care professionals who can make a big difference to the quality of life of someone with Parkinson's. Many also provide support directly to carers.

The more support the person you're caring for gets from professionals, the more you will be able to sustain your role as a source of support for that person. It's important to know about the different people who can help the person you care for.

You may find the following free publications useful:

It can also be useful for carers to keep a weekly or monthly diary.

Our Keeping a diary: for carers information sheet has tips and suggestions on the kind of information to include.