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UK Dementia Congress 2022

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Crowded room at our workshop

In November 2022, we presented at the UK Dementia Congress 2022. Read about our workshop and our poster below.

A summary of our interactive workshop at the 16th UK Dementia Congress – “Queering Dementia Care: How to Support LGBTQ+ People Living with Dementia Across Their Dementia Pathway”  

Produced and presented by members of the LGBTQ+ Dementia Advisory Group: Dáithí  Clayton, John Bond, John Hammond, Phil Harper, Christine Maddocks, Barry Moss, and Thomas Williams

Our first major conference attendance as the LGBTQ+ Dementia Advisory Group could not have been more of a success. On 8th November 2022, we presented an interactive workshop at the 16th UK Dementia Congress hosted by the Journal of Dementia Care. 

Overview of the session

Our workshop focussed on exploring how to support LGBTQ+ people living with dementia through their dementia care pathway. 

We started by considering our own privileges through an ice-breaker worksheet called “Power and Privilege”. The worksheet prompted attendees to consider 19 statements of examples of privilege and whether or not these applied to them. This got the conversation started and attendees’ responses factored into breakout discussions throughout the rest of the session. 

Breakout groups then discussed the meaning of person-centred care, equality, and the meanings of the words ‘cisgender’ and ‘heteronormative’. In the whole group feedback, there was stimulating conversation about these themes. Some people did not know the meanings of the words. Phil Harper explained:

“…cisgender means your gender identity is the same as the sex you were assigned at birth…”

“…heteronormative or heteronormativity describes the assumption that the world is set up for heterosexual people and that any deviation from this is considered abnormal…”

Finally, we asked the groups to think about three stages along a dementia care pathway:

  1. Living at home receiving care from an unpaid family carer and making the decision to start looking for a paid care provider;
  2. Actually looking for the paid care provider;
  3. Receiving care from the paid care provider.

How it went

The room for our workshop was full to the brim of guests. We could not have fit more people in if we tried! We counted 45 people who came to participate in our workshop. Take a look below!

Crowded room at our workshop

The energy in the room during breakout discussions and group feedback was positively electric. At the end of the session, each group was invited to share a “point of best practice”. The ideas that were raised were:

  • Providing a two-way screening process when entering a care home to ensure the care home setting offers what is important to the person so they feel a sense of belonging.
  • A minimum standard for staff training and a recognised accreditation for care homes to show they are LGBTQ+ friendly spaces. I also overheard a different group talking about how “happy staff make happy residents”, meaning that if the organisation is a friendly space for LGBTQ+ staff, then this will help provide an LGBTQ+-friendly space for residents.
  • Following a human rights approach to care, that is, we should not be saying “We don’t have time to do person-centred care”, and reframing the debate in terms of human rights.
  • Ensuring continuity of care and care staff to help reduce anxiety and eliminate the need for individuals to repeatedly “come out” and explain what is important to them.
  • Probing what the Care Quality Commission is doing to monitor and influence best practice for the care of LGBTQ+ people.
Discussions at the workshop

​We acknowledged that some of these are more aspirational points of best practice and that it is a challenge to get it right. However, it also demonstrates the potential for future collaboration and events to explore these areas.

Our Own Reflections

For us as a group, it was also another big first. Many of us had not met in person yet, as most of our connection is done online. It felt like another level being in the same room and talking face-to-face. We also bumped into some ex-members who were instrumental in starting the group.

We would like to say a massive thank you to everyone who attended our workshop and for the feedback throughout the rest of the day. What was clear is that there is a significant interest in developing this work. We already have ideas, and look forward to our next big event. 

Words by Thomas Williams – Core Member

If you interacted with us at Congress, please take some time to fill in our short survey:

A summary of the poster that was designed and showcased at the 16th Dementia Congress UK – ‘Queering Dementia Care: Changing the Narrative Through Lived Experience.’

Alongside the interactive workshop the LGBTQ+ Dementia Advisory Group was chosen to produce a poster to showcase at the event.  The group decided to design a poster that explained how the LGBTQ+ Dementia Advisory Group came to be and then summarised the work we have completed over the past year / year and a half, and outlined our goals for the future .

Thomas Williams

​The poster was also used as a tool to show the outcomes of the 2 live webinars we held during Dementia Action Week 2022.  I was offered the task of designing the poster and we wanted the poster to stand out from the rest and to make sure that it was easy to understand for all.

​The poster was well received at the conference with many people commenting on how visually pleasing it was and that the information was very clear and concise.  It also fitted our aims of being co-produced with the lived experience members of the group.  Also, the poster will be in a published collection by the Journal of Dementia Care.  Once the poster has been published, it will be added to our resource folder for others to see.

​So in all, I believe the poster got the message across that it intended to do and got the conference attendees talking about those people with dementia who identify as LGBTQ+.

Words by John Bond – Core Member