Thinking about Delegates with Dementia when Planning a Conference

Agnes Houston and Associate Professor Colm Cunningham share recent discussions on planning for and support of people with dementia at conferences.

In our meeting to discuss #IDC2020, Agnes and I reviewed plans on plenary and concurrent contributions from people with dementia. #IDC2020 prioritises supporting delegates with dementia and carers who may not have attended a conference before, so it’s important to consider the tips that have been developed in consultation with Agnes and other people with dementia on how to support these delegates: 

Remuneration: It should go without saying that invited speakers with dementia should receive payment, travel, attendance fees and accommodation. In our chat we did recognise that a direct payment of $s is not always what someone wants or needs, so a conversation about what ‘remuneration’ is important to that person should always take place.  

 Travel: We can often plan well for the person getting to the venue for the conference but forget about the importance of making sure they get the support needed to get back home. Making sure one of the conference team is dedicated to planning and supporting this is just as important. While the hurry and buzz for the conference team is to pack up following the conference, to rest sore feet or have a celebratory drink is great, don't forget the 'getting home' plan for each delegate with dementia needs our attention.  

 Buddy: Agnes reminds me of the importance of the 'pink ladies' at her first conference i.e. making sure the staff uniforms stand out and the 'can I help you?' areas are easily found. Signs that are hung from the ceiling or too high on the wall don't help, as they cannot be seen easily. Ideally all delegates with dementia should have a buddy who meets and greets the person and is available throughout the conference for help and support and to help plan and pace the event. 

Environment: While we recognise that most conference environments have their flaws, compensating for them is important. Partly we can do that with staff who can easily help, but some things we have learnt over the years include:  

  • Agree with the venue to bring your own toilet signs that show the symbol for the toilet 
  • A few banners that help navigate to the toilet also help 
  • The exit from the toilet area is not usually signed, so a sign inside the door helps. Think how many times you have heard about people trying to leave through the cleaning cupboard, because the exit door does not stand out! 
  • Scoping the area in advance is important, as modern bathrooms often feature complicated sensor-based hand-washing set ups.  So bringing a symbol based sign on 'how to' can really help take the stress out of this 

 Relax: Conferences can be busy and bustling places, so the inclusion of rooms dedicated to people with dementia is important. Some tips from Agnes include: 

  • Two Rooms! – A quiet room and networking room - one to rest and recuperate and another to banter and plan. A dedicated member of the team should be available at all times in this area 
  • Make this room invite only, the person with dementia may want a break from their support person 
  • Include a white board or poster board to enable people to plan, network and make immediate suggestions that can be sorted now, not next year 

This is only some of our thoughts on what is an on-going and important list.