Dementia Conversations began, I think in 2014, on the Isle of Wight – a gathering of people caring for someone with dementia, organised by a local Church of England minister and Barbara Stephens. It was a response to an awareness that mainstream services were not sensitive to the needs of individuals with dementia, nor the needs of their families. The friendship and learning which occurred in the monthly meetings was powerful and helpful. There grew to be three location meetings on the island, and we followed their lead 2016 at Bowdon Vale. We opened our meetings to people with dementia and to others who were interested and concerned.
These two hour monthly sessions were well supported and appreciated. They stopped 2019 with the coming of Covid-19
In amongst Covid – we began to meet on line – We do this monthly and can include people locally, or from quite far afield. The conversations and learning are unfailingly impressive. Here is a note from a recent session:
We were grateful for this time together. There was wonderful sharing of recent and past experiences and learning, including acknowledgement of current illnesses.
We heard of progress with legal and financial matters which have been so distracting and wearing for months and years – adding to the stress of living and dying with dementia. How we wish systems could be improved.
Some additional stress comes from the way people are – some members of family as well as some professionals.
We reflected on life within professional care environments, care homes. How difficult it is to have trust. How small things matter so much – a haircut, a clean shave – Maybe these are not so small. But appreciation too of the efforts which staff make – to give kindly and creative care, to work with family, to provide a lively week programme. It does not happen in every home. Where it does – it is wonderful. Where it does not, it leaves sadness, anger and unresolved frustration.
For some, in the months beyond, there is a profound feeling of loss and sadness. Where this is not lifted by informal supports, there may be great value in seeking help from Cruise or other agencies. It is a time and an experience to be owned and to be worked through. There will be a better resolution and perspective.
We were reminded that although a partner may have died, they remain very much part of life for those who have loved them. Awareness peaks at some special times. ‘Someone was not there to see it’. Well – maybe they were.
We reflect again, that everyone in this group has a unique and important story to tell – the details of how difficulties have been met, will be of help to many others. More, I believe, than all the medication which science can offer and even wish for. So I hope people will write, and we will find a way to publish.
Not quite guerrilla war – but an independent view and self help