Involving services users and carers

Steering Group 

Our Steering Group includes representatives with experience of living with dementia, or providing care for a person with dementia. The Steering Group advises us on all aspects of the project.

Feedback from service user review panels

People with dementia participate in Service User Review Panels organised by the Alzheimer’s Society. In 2017 four panels agreed to review the findings of Round 3 of the audit and let us know that they thought. We asked them if they would also tell us what was most important to them when they had a stay in hospital. Their feedback led us to make some improvements to the audit tools used in Round 4.


Representatives with experiences of caring for someone who has dementia sat on the Steering Group which advised on all aspects of the audit. 

Carer questionnaire

Development of the carer questionnaire was informed by a panel of carers and patients. Carers were involved in testing the questionnaire and returned comments on content and format. In round four of the audit, we received a total of 4736 carer questionnaires from people who look after a family member/friend/partner with dementia in England and Wales.

Working with John's Campaign

John’s Campaign is a partner organisation and is represented on our Steering Group. They advocate for the removal of all restrictions on family carers supporting their relatives in hospital.

"John's Campaign was founded in November 2014 by Nicci Gerrard and Julia Jones. Behind its simple statement of purpose lies the belief that carers should not just be allowed but should be welcomed, and that a collaboration between the patients and all connected with them is crucial to their health and their well-being."

Find out more about John's Campaign through this update and on their website.

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