Information for services users and carers

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. 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 - View the report with feedback.

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.

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."

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

Carer questionnaire

Data collection for Round 4 (2018-2019) has now closed and we received a total of 4736 carer questionnaires from people who look after a family member/friend/partner with dementia in England and Wales. The report will be published in summer 2019 and further details will be made available on the website accordingly. The NAD team would like to thank everyone who took the time to complete the carer questionnaire. 

Previously in Round 3 from the responses and comments submitted, 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

 

National reports

Hospital reports

View individual hospital reports for Round 3 to see how your local hospital did in the audit.

 

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