With Philly and Damian from Innovations in Dementia.
14 groups were represented by 18 people including 10 people with dementia.
We focused on one general question – “What control do you have in the running and direction of your group?”
We discussed:
· the pros and cons of being an independent group, not beholden to a statutory organisation and being a group hosted by such an organisation. Clearly something worth pursuing further.
· The role of a facilitator. As the word comes from the Latin – ‘To make things easy’. We shared examples of when that was the case (just get us together, make sure we all get a say and put the kettle on) and when it wasn’t (we can’t get in touch with each other. We are not sent on individual copies of Our Dementia News, the DEEP newsletter. We just don’t know what’s going on in the wider field)
· The flow of ideas and how that can be encouraged, especially for newer more reserved groups, for example. If people come together and just get talking, ideas and questions will arise.
· The change in levels of participation since face to face meetings were replaced by zoom – there has been a growing influence of the voice of care partners sometimes taking over groups. This is often well intentioned but a clear message shared by all was that both care partners and people with dementia have different needs and need a separate space to air those.
· The measures some groups are taking to preserve control of the voice of people with dementia – eg a new ‘Online etiquette’ has been developed by one group.
· Equal representation and input from members with more advanced needs. We found that groups with a strong bond and family feel ‘hold’ fellow members and support them, and that any messages from that group comes from all members of that group regardless of extent of their disability.
· The pros and cons of a group set up for purely social reasons and those established with a more formal process in mind. It was suggested that in a group founded on peer support and social reasons, questions and ideas may organically arise that the group themselves will be keen to address together. As one member said only recently about this:
‘It started off as the group for us to support each other then it grew arms and legs’
The power and control within that group clearly lay in the security of their relationship and knowing their main purpose. Belonging to that group brought the confidence to speak up, and follow up on questions and real issues relevant to their everyday lives.
We shall be holding 2 more zooms on
Thursday 27th May 10.30 am and
Tuesday 15th June at 10.30am
If you want to explore this further contact to book your place.
If you feel you want a more detailed discussion you can contact or
The next facilitators Zoom will take place on Wednesday 21st April between 12.30 and 1.30. The theme will be constructive criticism/ideas/review of Our DEEP News.
Please book your place with Anna@myid.org.uk
