Tips for recruiting people affected by dementia to measure their experiences

We identified these tips from desktop research, our survey of  30 people with dementia and carers, and review of the resulting draft list by 9 more people with dementia.

• members of the Open Minds (Ladies) group in Peterborough
• a person who organises peer support activities in Nottingham
• people with dementia in Northern Ireland and London

Ask people about getting involved when they use a service.

Don't forget to reach out to people not using a service too.

• ‘I agree with this wholeheartedly. It’s only by the contact I had with the staff at the memory clinic when I got diagnosed that I knew where to start looking about getting involved.’
• 'I was recruited after I got my diagnosis... The consultant that gave me the diagnosis ... was working with a TV programme about early onset dementia and ask me to tell my story. This was a very positive thing for me... Being asked to work with the people who were helping me made me feel my life wasn’t going to be over it was just going to be different!'
• ‘they should be able to get involved regardless of whether they are service users.’

Existing relationships can be helpful.

• ‘It’s important to get to know the person but in a one off thing you don’t get to follow it up afterwards. Because I’ve done the swimming group we’ve made friendships and it’s made it more comfortable to say ‘would you like to help me with the Memory Walk?’. You’ve got the connection – you build the relationship.’

Consider recruiting people over a period of time.

Ask people who get involved, if they would like to stay involved. For example, ask people who complete a survey if they would like to get involved in interviews too. 

Can people who get involved help you recruit more people?  Ask them - they may know people who would like to help. 

Encourage, don't just advertise 

People with dementia often lose confidence. It helps when someone shows faith in them.

• ‘Advertising is a poor substitute for encouraging.’

Show people, don't just expect responses to adverts.

• ‘That happened yesterday – a new person came in to the memory café where I volunteer. His wife said he can’t read and took all the information away before he could try to read it for himself.'

Offer a choice of ways to get involved

Provide a postal address and a named contact, not just a generic or other email address. Some people may not be able to travel to an event, but would like to take part using an engagement pack instead.

• ‘email? Don’t use it now (and some have not ever had one).'

• '...sometimes I have my off days - ‘frustrating Fridays’ and ‘terrible Tuesdays’.’