If you have any questions please
contact the project team.
Feedback from service user review panels
People with dementia participate in Service User Review Panels organised by the Alzheimer’s Society. Four panels kindly agreed to review the findings of the most recent round of audit (Round 3) 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 tools we're using in Round 4 of the audit. View the report with feedback.
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.
Members of the Steering Group living with dementia advised on and approved the content of the Accessible version of the Round 3 report.
Our national report for Round 3 included a list of expectations which carers and family members of people with dementia can expect of hospitals when someone with dementia is under their care.
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."
In 2016, 4664 people who look after a family member/friend/partner with dementia in England and Wales completed a questionnaire for us.
Thanks so much to everyone who returned a carer questionnaire. We believe this is the largest number of people to provide feedback on the care provided to people with dementia when they are in hospital from the same time period, ever.
From the responses and comments, we were able to tell hospitals that carers need hospitals to:
- Improve communication with the carers of people with dementia and listen to the information the carer provides
- Make more effort to make sure the needs of people with dementia are met e.g. nutritional, personal care needs and understanding and accommodating the preferences and individual needs of the person
- Include carers of people with dementia (as much as the carer and the person living with dementia wants) in decisions about care and treatment
We need your feedback again this year please!
Round 4 of audit is now taking place and will include the carer questionnaire. Between June and September 2018, carers, family members, friends and key workers should be able to get a carer questionnaire for the audit in all participating hospitals.
The questionnaire will also be available online. It has 16 questions in total and you can answer any or all of them. It also has the opportunity to write comments and suggestions. You can view a copy of what the questionnaire will look like on the Round 4 webpage.
People completing the questionnaire will have the chance to enter a prize draw to win one of five £50 vouchers for a high street store of their choice.
- You can see the responses from the carer questionnaire for Round 3
- Our National Report contains a summary of comments received from carers.
- Accessible version of the national report for Round 3 is a shorter version of the national report’s findings and recommendations.
View individual hospital reports to see how your local hospital did in the audit.