Share your experience of caring for someone with Parkinson's-related dementia

We’re launching a survey 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. 

The  pandemic has tested us all, especially those caring for people with Parkinson’s dementia and 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. 

If you've experienced caring for someone with Parkinson's dementia or dementia with Lewy bodies, we'd love to hear from you.

Fill in the survey.

Your experience can help change care and support

Barbara Deering cared for her husband, Barney, who had Parkinson’s dementia. Barbara says:

“Caring for someone with Parkinson’s and dementia can be a very lonely place. If I had known what to expect and how to deal with it, it would have made my life so much easier. 

“I am sure I could have looked after my lovely husband for longer at home if I had the support I needed. Please help Parkinson’s UK understand what matters to you by filling in this survey. They need to hear your views of your experiences to help change attitudes and improve support.” 

We plan to use the information we gather from the survey to develop solutions to the challenges identified. This information will also help us campaign to improve support for carers, and people with Parkinson’s dementia and dementia with Lewy bodies. 

The deadline for survey responses is 5pm, Friday 11 June 2021.

Get support

If you need support or information relating to Parkinson’s dementia and dementia with Lewy bodies, please contact our helpline on 0800 800 0303. 

If you have any questions about the survey, please contact Sam Freeman Carney on 020 7963 9394 or email [email protected].