Meeting facilitated by Rachel; Lucy taking notes
Rachel re-capped on purpose of the group – namely to create a virtual group to support LGBTQ+ people affected by dementia; action after initial meeting on 25 June was to reach out to other interested parties; new attendees were welcomed; everyone introduced themselves briefly.
Discussion
Rachel observed that the initial idea for the group is that it will primarily be a support group, and might not be an “activist” group; some members may want to campaign but others will probably just want “a virtual hug”. The group may be small to start with. Many DEEP groups have started with just two or three people and have taken time to build. Zoom is now helping us to make connections across all the boundaries. How do we make it happen:
Who is going to facilitate it?
It must be “owned” by people affected by dementia
It will need some professional involvement, for example, admin support
Ideally a partnership between different organisations
Partnership approach
General agreement that partnership is the way forward. Noted that it can get messy if several organisations are involved and it is not clear who is responsible for what. A good model may be to have a steering group from a consortium of partners with one organisation as the “lead” organisation, answerable to the steering group, responsible for “making it happen” i.e. admin and technical support etc.
Facilitating online meetings
Is it best to have volunteer facilitators, people who are living with dementia, rather than professionals? Mike is an experienced facilitator and trainer and is keen to offer his services as a facilitator. Noted that facilitating meetings is hard work and a volunteer facilitator who is a member of the group does not necessarily get their own support needs met. People could take it in turns to facilitate. Important that not all the volunteer facilitators are carers, to keep the focus on people with dementia getting their voices heard; but NB, some carers act as advocates for the person they support, if that person is no longer able to speak on own behalf. Suggestion that trainee psychologists might facilitate the group, which is established practice in many DEEP groups in Kent.
Experience of the Zoomettes, an online group of women with dementia, suggests having two facilitators, one to “chair” the discussion and one to take notes, works well. Evaluation of their pilot project is attached as this gives us an example of how an online support group like this can work.
Safeguarding
Noted that it will be crucial to ensure safety and wellbeing of participants. It might be necessary to follow up after a meeting if a participant needed individual support. Who would do this follow up, and what support would they get? If trainee psychologists were taking part as facilitators it could be them; they get supervision/support as part of their role. The Zoomettes have shared their learning about safe guarding.
Plymouth University potential research project
Hannah and Sarah are working together on an existing project developing a role for dementia support workers in GP practices; they came along to describe a new project they are hoping to run, on how to make virtual dementia support groups fully inclusive. See Powerpoint slides below.
NB This new project has not yet been approved/funded.
Click on the link for slides from Plymouth University:
Visit to DEEP LGBTQ zoom group HW and SG slides
People were very interested in the project and several said they were keen to get involved. It would be important to make sure taking part in a research project didn’t distort the main aims of the group. Positives of taking part include that we would have an evaluation of how our zoom group was working, which would be invaluable for future funding bids, and also that the training materials which would be produced would greatly help LGBTQ+ visibility.
Actions
- All to reach out to more people who might wish to be involved. Natasha will contact Claire Days, coordinator of ongoing Bring Dementia Out project
- All to consider pros and cons of taking part in the Plymouth uni research project
- Rachel, Lucy and Natasha to discuss putting in a quick bid to Big Lottery Awards for All
- Future meetings to last one and a half hours
- Rachel willing to continue facilitating these planning meetings for now; volunteers needed for taking notes at future meetings.
Next meeting:
Thursday 23 July 9.30 – 11am.
For further information please contact: Niblock@myid.org.uk
Meeting attended by:
Mike Parish carer for partner Tom, activist, Bath
Chris Maddocks, living with dementia, activist, partner to Heather, Eastbourne
Heather Ritchie, partner to Chris, Eastbourne
Hannah Wheat (researcher Plymouth Uni) project described below
Sarah Griffiths (researcher Plymouth Uni )
Thomas Williams, researcher on project on supporting people with dementia with technology, Bath
Natasha Howard – Alzheimer’s Society Innovations team, lead on Bring Dementia Out first phase, (currently on furlough); team is doing work on inclusive technology and creating virtual community centres
Louisa Marchant, inclusion worker at Brighton Carers Centre, Lewes
Persia West, caring for partner with dementia, Brighton
Lucy Whitman Coordinator for Opening Doors London Rainbow Memory Café and new national online Rainbow Carers Group, London
Rachel Niblock UK DEEP Coordinator, Brecon Beacons
