How to recruit people affected by dementia

When commissioning or producing dementia services, you need to recruit people affected by dementia to give their opinions. Find out who to involve and how to recruit them.


It may help save time and resources, and get you more valuable results, to plan who, where, why and how you want to find people. The pages in this part of the guide are to help you to do this. 
Who do you want to learn from, and why?

Be clear about who you want to recruit - and why - to help you plan your recruitment.  You may need to use different ways to make contact with different groups of people.

  • People with dementia and carers

    • current users of your service
    • people who are not using your service
      • perhaps they are unaware of the service?
      • perhaps they perceive it does not meet their needs?
      • perhaps institutional barriers such as lack of cultural sensitivity, or not having an inclusive culture, lead them to delay or avoid using the service
      • people who are both living with dementia AND caring for others with dementia or other disability.

Who can help you find out what you want to know about - your 'research question'?

  • What kind of data are you collecting?

    • Quantitative? 
      • the sample of people with dementia you want to find out about should be chosen at random.
      • larger numbers are needed to build a representative picture.
    • Qualitative? 

      • you are looking to understand subjective experience, so you want a person living with dementia who also has particular characteristics and/or experiences. 
      • it's not a numbers game, so you may choose to have only a few, or even just one or two, people in your sample of people with dementia. 

      • Beware of getting a 'convenient sample' of only the people easiest to reach, regardless of whether they actually have any relationship to the sort of experience you are trying to find out about. For example, staff and volunteers may also be carers or living with dementia, and their experience is valid, but given their connection to the service, their experiences may not reflect those of people less connected.
      • Be cautious about relying on a sample made up of service user volunteers - they may be convenient and keen, but do they have the right sort of characteristics or experiences? At a minimum check that they do, rather than just doing tokenistic research with 'the usual suspects'. 

      • Do you want to be 'purposeful', that is to  recruit people with dementia who have specific characteristics or experiences that will enable you to fully answer your research question?

        • Do you want the 'maximum variant' or most diverse range of people who have relevant characteristics, lived experience or insights to bring to your research? 
      • Do you want your sample to include people who deviate from your typical service user?

Look out for the 'saturation point' to know you have enough responses 

  • you have reached this when you start to find repetition in data you are collecting, to such an extent that you realise you're not getting any new insights/different responses. At this point you have enough data to answer your question.