Share your experience of caring for someone with Parkinson's dementia or dementia with Lewy bodies
We want to understand more about the support you receive as a carer, and the experiences you and the person you care for have with the health and social care system today.
We want to know what is important for you, so together we can influence changes to health and care services.
We need as many people as possible to complete the survey so that the voices of carers are heard loud and clear.
The deadline for survey responses is 5pm Friday 11 June 2021
Why this is important
The pandemic has tested us all, especially those caring for people with Parkinson's dementia or dementia with Lewy bodies. With reform of health and social care high on the government’s agenda now is the time to get your voice heard.
It is important that we understand the particular challenges you face in getting the support you need, and the care and treatment the person you care for also needs.
We will use the information we gather from the survey to develop solutions to these challenges and campaigns to improve support for carers and people with Parkinson's dementia or dementia with Lewy bodies.
What is involved in taking part
This survey takes approximately 15-30 minutes to complete and you can choose to remain anonymous if you would like to.
The survey will include a number of topics such as support for you as a carer and the challenges you may face, the process of being diagnosed, the quality of care given by health and social care professionals and how you access information and support on caring.
What are the benefits of taking part?
This is an opportunity for your voice to be heard by telling us about your experiences of the health and social care system.
What you share with us will inform our work to campaign to improve services for people with Parkinson's dementia or dementia with Lewy bodies, and support for their families, friends and carers.
For more information or if you have any questions please contact Sam Freeman Carney, Parkinson’s UK on 020 7963 9394 or email firstname.lastname@example.org
A note on terminology -
In this survey we refer to both Parkinson's dementia and dementia with Lewy bodies
If there have been motor symptoms (such as tremor or rigidity) for at least one year before dementia symptoms occur, specialists will often give a diagnosis of Parkinson's dementia.
If dementia symptoms occur before or at the same time as motor symptoms, specialists will usually give a diagnosis of dementia with Lewy bodies.
Because Parkinson's dementia and dementia with Lewy bodies are so similar, you may hear both of them being called 'Lewy body dementia', or read about them being grouped together under the term 'Lewy body dementia'.
If you would like support of information relating to Parkinson's dementia or dementia with Lewy bodies
please contact our Helpline on 0800 800 0303.