Communication with carers in PD

The relationship between a person with Parkinson’s disease (PD) and their carer is very important to the successful management of everyday life with PD. Good, truthful communication is vital, and some communication tips for a person with PD and their carer are listed below, and on the ‘Communication card’ that can be downloaded from this website.

• Stay calm – remember that, at times, PD can be frustrating for both the person with PD and the carer. If you feel annoyed, try closing your eyes or counting to 10 before you react to the situation.
• Be open and honest about PD – discuss any aspects of PD or daily life that are bothering you, and try to find a solution together.
• Be clear about when you do and don’t need help.
• Use practical aids – if communication is a practical problem, ask the multidisciplinary team about speech therapy or practical devices such as voice amplifiers.
• Discuss your feelings – not only with each other, but also with a friend or support group. If needed, your multidisciplinary team can advise on counselling and emotional support.
• Be patient and understanding – PD sometimes makes it difficult to speak clearly or to understand quick or complicated speech, so keep all speech calm and simple (while avoiding being patronising), and ask for patience from your carer when movement is slow or frozen. At those times when you feel like a patient – BE PATIENT.
• Show your appreciation – remember to thank and compliment each other, and never forget to show affection. PD sometimes limits facial expressions, but this does not mean that there is a lack of feeling.
• Don’t always focus on PD – take time to enjoy activities together, and talk about matters apart from PD.
• Attend medical appointments together from time to time. This can help with understanding PD, and the doctor may also find it valuable to hear the view of the carer. However, a carer should avoid speaking on behalf of the person with PD.