Dementia-Friendly Focus Groups

Number of people with dementia:  3 to 6 people (who, ideally, do not already know each other)

Pros and cons

Useful for: hearing a range of views from invited people; helping to plan other involvement activity together such as designing survey questions or events. Can be helpful where people may lack confidence to speak up in 1-2-1 conversations.

Downsides and risks can be: responses may be influenced by what other people are saying and wanting to conform to the group, and/or to please the facilitator. Some people may dominate and push particular views or agendas. 

Cost: relatively inexpensive - can be done within events or as freestanding activities.

Timing: not more than 2 hours (including time for warm and friendly welcome and introductions, refreshments break, time for people to digress while answering your questions, time to thank people at the end and let them know what will happen next with what they have told you).

Preparation

• Plan your questions:
  • Identify three or four broad, open, questions relating to what you want to learn about (your overall research question).
  • If possible, test your questions with people living with dementia who have similar skills and abilities to the people you want to recruit to your focus group.
  • See our guidance about types of questions. 
• Recruiting people: follow our guidance about identifying who to invite, consent, practical and ethical considerations. Consider using a participant information sheet, an Information about me form and collating the information in a form to have to hand with you on the day. Consider sending reminders in ways people prefer, for example using a reminder letter, text or phone call.
• Checklist of things to consider telling people due to attend your activity.
• Plan your agenda: consider using a document with large fonts, contrasting colours and clear timings.

At the meeting - getting started

• Ensure you have water, tea and coffee (or whatever drinks the people prefer) close to people during the session
• Consider having biscuits and fruit available 
• Ensure there is someone to meet each participant at the venue/the station etc as agreed
• Ensure the way to the toilets - and out again - is clearly signposted (see our dementia-friendly signage)
• Provide name cards and badges
• Provide communication cards as a constant visual permission for people to let you know of any needs to help them participate during the session.
• Remember to use informed and process consent - introduce yourself and what will happen, including how responses will be recorded. Check everyone is happy to go ahead. Ask people to sign consent forms. 
• Suggest ground rules or group contract: one person speaks at a time, respect each other even if you disagree with someone else's opinion or idea, there are no right or wrong answers

• Consider using a flipchart to write down key words and phrases people use to help them know they have made points they wish to raise.

At the meeting - discussion:

• Allow plenty of time for people to process your question and to provide their answers. Encourage quieter people to contribute. Don't panic if conversation digresses - gently steer it back on track.
• Using post-it notes can be a good way, where people are willing and able, to ensure each person's ideas are included, not just those of one or two people more able, confident and/or anxious to make their points. If using post-it notes, ask people to write one idea per note. Collect the post-it notes and group them into themes. Reflect back to people what the themes are, and notes. Ask people to tell you about what they have written. 
• Record people's words, not just a gloss interpreting them 

At the meeting - endings

• Reflect back on what people have done and thank them for their contribution.
• Tell people what will happen next and when you will update them about how their comments will be used.
• Check everyone has all their belongings, coats etc.
• Check everyone is OK to get home safely. 

After the session

As soon as possible write up your record of the session, using people's own words where possible, together with any observations you feel relevant. Example record of group meeting. 

Follow our guidance on analysing your data to guide you about 'coding' responses into themes - including where you may be running more than one focus group on the same topic.  Example of group discussion 'coded' into themes. 

Real-life examples featured in this resource

Commissioners co-producing recommendations for integrated care using Dementia NHS Well Pathway - Norfolk STP 

Dementia and unmet spiritual well-being needs in Northern Ireland

Pads in bags - including people affected by incontinence