Using the Dementia Statements to Measure Experience

Approaches to collecting and measuring data about whether service users’ outcomes have been met, are not the same as for finding out about the number of hospital beds occupied or the number of hours of home care delivered. The Dementia Statements can help you with this.

Inspiration for service user outcome questions

You might like to take elements of each statement and explore them individually:

• ask about current experience rather than remembered experience
• focus on people's feelings about services, rather than factual and technical aspects
• keep the questions simple, short and jargon-free.

• Example: Dementia Statement: 'We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.'

  • Idea for questions to ask service users
    • ‘Do you get involved in planning your care?
    • 'Do you get to choose what you do, such as activities and outings?'
    • 'Do the staff understand your needs?'
      
      The Health Involvement Network in South London tried this sort of approach with the previous version of the Dementia Statements. You can find out more about the tool they developed, and their learning from using it, in their report: Measuring Outcomes in Dementia Services.
       

• Example: Dementia Statement: 'We have the right to an early and accurate diagnosis, and to receive evidence-based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.'

  • Idea for questions also linked to the Clarity of the Offer for Dementia 

    • 'Does your doctor understand how your dementia affects you?'

    • 'Do you get help with day-to-day activities, if you need it?'

    • 'Do you know how to find out about local organisations that can help you?'
       

Inspiration for new service development

•  Example: Commissioners co-producing recommendations for integrated care using Dementia NHS Well Pathway - Norfolk STP engagement events (2018-2019) 

  • Methods: People living with dementia, and carers, took part in focus group activity based around the NHS Well Pathway for Dementia and taking the Dementia Statements into account.