Reporting on your research findings

Once you've conducted your research into a dementia service or product, you need to report on the findings and let people know what you discovered.

Who will you tell?

  • Internal audiences: For example
    • to enable managers and/or clinicians to understand how things are working and what changes might be made.
    • to update staff across an organisation through internal communications such as blogs and newsletters.
  • People who gave you feedback/shared their experience.
     

What will you tell people?

  • Thank you - please show your appreciation as soon as possible after you get feedback.
  • Tell people about the decisions you reached
    • as a result of gathering and learning from their feedback.
    • explain what you took into account in coming to your decisions.
  • Tell people about progress. 
  • Tell people what impact their contribution has made.
    • how what they told you was helpful
    • results of learning from their experience such as
      • changes to documents or language used
      • changes to process 
      • changes to plans or policies
      • validating your ideas about issues, solutions, policies and plans.
         

What if you cannot make changes people say they want? 

  • still tell people about what's happened since you got their feedback.
    • be sensitive in giving negative feedback - consider their feelings, vulnerabilities and motivations for sharing their experience with you.
    • show you still respect and appreciate their inputs.
      • People with dementia often talk about feeling that other people try to take advantage of the memory impairments often associated with the condition by trying to avoid telling them things or hoping they might forget about sharing their experience.
      • Being honest, and showing respect can help to avoid losing trust and damaging community relationships.
         

How will you tell people?

  • Consider whether to write a report, letter, or tell people directly.
    • Remember that many people with dementia do not use the internet, so may miss out on getting updates only posted on your website.
    • people may appreciate you taking the trouble to update them in person, allowing them to ask you questions and have a conversation, even if you are bringing them bad news. 
    • Beware of simply expecting people with dementia to find out at a public meeting which may be very angry or packed with lots of information in presentations - it could be overwhelming and frightening for them.
  • Consider simple and more visual methods to share information. For example, Wordles, mind maps, smart art and shapes, videos, infographics, Easy Read and simplified English, reports for different audiences…

    • This is because people with dementia often develop difficulties with reading and processing written information - from forgetting the previous page or sentence, to having difficulty recognising language in written form, or the brain not being so good at discerning detail. 

      Example Wordle showing words people used to feedback what they like about this site. The bigger the word, the more times it was used in the feedback we received.

Image shows cloud of words known as a 'wordle'. ​

Tips for written reports

When will you tell people?

  • Feedback to people you involved soon after involving them: not just a thank you, but an update about what's happened since they participated, what the results overall have been, and what will happen next.
  • Where appropriate, provide further updates as your work progresses. For example, you may need a while to take results to Board meetings, make budget plans and so on.
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