Dementia Conversations 2022 – Listening, learning and gaining strength

By Professor David Jolley

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The first Dementia Conversations began on the Isle of Wight 2015. They happened in response to the experience of Reverend Veronica Brown and Barbara Stephens who had attended a conference on the Island in which the statutory authorities had sought to inform people about dementia and the services available to help people and families with dementia.

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While families were pleased to hear the wisdom of the professionals, talking amongst themselves they were saying that they found existing services difficult to access and often unable to understand or respond to their needs. So Veronica and Barbara set up for people to come along on a monthly basis to the church hall to share experiences and thoughts, find ways of making things work and perhaps influencing the authorities. That worked well, attracting something like 20 carers to most meetings. It was expanded to two other sites on the Island.

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We in Bowdon Vale became aware of Dementia Conversations via Dementia Pathfinders and felt this was something we could do with benefit. Meetings at our church hall began in the spring of 2016 – hosted by Reverend Ros Watson and Professor David Jolley. The invitation was to people with dementia, carers and anyone with a serious interest in dementia and ways to help people when it occurs. The format ran over a two hour session with a break for refreshments, the first half devoted to communications around the group – the second to updates from publications or the press, and speakers on topics of interest. This worked well in terms of generating friendships and support – and also in getting to know about other local facilities beyond the mainstream care from Local Authority and NHS – and we gained in knowledge. Our last meeting in the flesh was couched as a ‘Time for a Cuppa’ event with Dementia UK March 2020. A lovely meeting which attracted interest beyond the usual group. But then came the lockdowns of Covid-19.

 

As for virtually every support activity, we were obliged to stop as the Methodist Church would not allow the use of its premises for any activities – including church services. Many people were cut off from support which had made their lives enriched. The heroic and ingenious means by which some organisations, including churches, made every effort to give people a reason for living – by telephone, via the internet and by visiting at a distance have become  a matter of record – almost legend.

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We found at first that we could not carry on. After a gap of several months we recovered confidence to launch Dementia Conversations on Line – meeting once a month – and open to anyone within the inclusion criteria which had held for in-person Conversations. This can be accessed by people anywhere in this country and potentially even further afield – the potential is great though attendance has rarely been more than eight. Smallish number – but the quality and intensity of interactions remain high.

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We attempted a re-launch of the in-person sessions in the autumn 2021 but this foundered – many people had lost confidence in coming out at all – and there was still uncertainty about the safety of meetings – despite assertions from government that all was well – In practice there has continued to be periods of high infection rates with covid in one or other of its forms – and older people with dementia remain amongst the most vulnerable to becoming ill or dying as a consequence. We may try again this year. Musical memories – a drop-in activity which has developed at another local church is up and running and other facilities are gaining in trust and confidence. It may be appropriate to link Dementia Conversations to one of these.

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