• What does it take to start and sustain a Conversation? 13 February 2017 | View comments

  • 13th February 2017 | By David Jolley

    Dementia Conversations have been occurring on the Isle of Wight and Bowdon Vale for 12 months and more. Those involved are convinced of their worth and there is considerable interest from a wider circle who have heard about them by word of mouth or from presentations at the 2016 Dementia Congress and other settings.

    ‘Conversations’ at East Cowes was established by the Reverend Veronica Brown and Barbara Stevens. Bowdon Vale is led by the Reverend Ros Watson and Doctor David Jolley. Both offer regular monthly meetings using church premises and lasting two hours, including a break for refreshments.

    There is an open agenda and the vision is of conversations which will go on and develop and change over time.

    They begin with frustration that despite the heightened profile of dementia and related conditions, the formal recognition and regular upgrading of a National Dementia Strategy since 2009, and the worthy efforts of The Alzheimer’s Society, Age UK, Dementia UK and other charitable bodies, people with dementia and their family carers, and interested members of the general public feel short changed.

    Dementia Conversations offer a local forum where people come together to share experiences, hopes and needs, from the practical to the spiritual.

    This is not just a variant of ‘Dementia Friendly Churches’, though encouraging and enabling churches to be friendly, respectful and understanding to people with dementia and their families is one thing we would always want to see. It is potentially wider and deeper than that.

    The fact that both pioneer Conversations are founded within a church must be significant. This has identified the likely attendees and given a clue that discussion of matters of faith or spirituality might be encompassed without embarrassment. But the meetings are not essentially faith based or part of a religious orthodoxy. People of any faith or none are welcome. People come because of shared unmet needs relating to life with dementia. They look for and find strength from themselves and each other. The ‘leaders’ are facilitators rather than teachers.

    We hope that many other localities will establish Dementia Conversation groups. If this happens there would be benefit in networks to share and support each other and perhaps to have an impact beyond each particular locality. But the main ambition is to be relevant in a locality, to know people and become known and trusted as a source of honest discussion and strength in our own resources.

    It seems right to have at least two facilitator leaders. 

    One or more with a local profile, as someone who knows the place and its people will be important.

    One or more with a mature knowledge of dementia and related conditions, and services will provide the foil to people’s uncertainties and thirst to know more, and to make best use of what support is already in place and to nudge the creation and development of more or different activities.

    Open minds and a willingness to learn from a non-judgemental perspective will give peace and the time and space to gain insights and find solutions which will be unique to every situation but may be of use to others. 

    Experience of being involved with groups of 10 t 20 people is an advantage. 

    A gentle, simple timetable which allows flexibility but does not foster chaos or the hijacking of time by individuals with articular gripes, makes best use of time and maintains good humour.

    Refreshments are important so that preparing them, displaying them and giving time for them to be enjoyed, along with less formal chat, makes the day. There are shared tasks of washing up, clearing up, leaving the place tidy and agreeing what will happen next. It is good to share what has happened with regulars who have not made it to this meeting so that a sense of belonging and being valued is sustained. These are tasks which people are often pleased to make their own.

    Reflection on the conversations, learning from them and integrating the local spectrum of interests and needs with national news of research and advances in learning as well as the politics of national and local service providers, keeps things fresh and on target. Awareness of other initiatives, to learn from them and to join in with some, all takes time and a degree of insider knowledge that comes with years of personal contact.

    One of our members, who has a longstanding diagnosis of Alzheimer’s disease said early that the basics are.

    ‘Be there and love me’

    This applies to leader facilitators as to all carers

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