The importance of carers in support for people with Parkinson’s – Claire Ballinger and Ali Rowsell

Around one in 500 people has Parkinson’s, a condition affecting movement, and sometimes also causing pain, tiredness and low mood.  There is currently no cure; however drugs and rehabilitation therapies can help to relieve the symptoms.  Although not the same for everyone, Parkinson’s is progressive, and in the later stages, people often require additional help.

People with Parkinson’s sometimes experience falls, which can cause physical injury and concern, for both those with the condition and their carers.  We are working with Prof Ann Ashburn and Dr Helen Roberts to test a new form of physiotherapy involving targeted exercises and strategies to see if we can reduce the number of falls and injuries experienced by people with Parkinson’s. We have particular responsibility for the qualitative part of this project, which involves discussions (or ‘interviews’) with people with Parkinson’s just before they start our physiotherapy programme, and again six months later.  We are keen to find out what it is like on a daily basis to for both them and their families/carers to have Parkinson’s, and later, how they found the new physiotherapy programme, including those things which both helped and hindered them to complete it.

Social network mapping tool EUGENIE - 'circles tool'
Social network mapping tool EUGENIE – ‘circles tool’

We are using the ‘circles’ exercise to help us to understand the support and resources which people use to help them manage their daily lives.  Although too early to report back findings from our project, we are aware of the importance of partners and carers in the daily lives of many people with Parkinson’s.  Previous research, funded by Parkinson’s UK, has shown that, as well as helping people with Parkinson’s who have impulsive behaviours, talking-based therapy can also prove useful for their carers.  Assistive technology (devices and aids which can help in everyday life, such as grab rails and touchable lamps) can also make a difference to both the person and their carer. Through our own research, due to be completed in 2017, we hope to learn more about what works for people with Parkinson’s, and how carers can best support them. There are many sources of information available on the internet, including Parkinson’s UK, advice on NHS Choices, Carers Trust, Carers UK and Employers for Carers.

As well as conducting research Claire is the CLAHRC Wessex lead for Patient and Public Involvement
As well as conducting research Claire is the CLAHRC Wessex lead for Patient and Public Involvement

Our project was funded through an application to the NIHR Health Technologies Assessment Programme and works with NIHR CLAHRC Wessex research projects.

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