In Dementia Awareness Week, Sarah Thorpe shares her experience of how living with dementia can transform churches.
Today Iām at Church House, Westminster, meeting with representatives of 26 dioceses to talk about dementia and church ā everything from practical worship to the theology of dementia.
Itās the first time there has been a gathering like this, but with 850,000 people in the UK living with dementia, itās an important one. Ā Itās strong to be able to share experiences and resources together across the dioceses, sharing such a momentum in becoming more dementia-friendly churches.
One of the things about dementia is that it takes us to the heart of what matters ā and what does not matter. My father, Theo Christophers, was diagnosed with dementia 7 years ago. Ā As we say in our family, āWe learn new dance steps together, as the patterns changeā.
Dementia is personal, but it is also at the heart of church, taking us to the heart of our faith. Thereās so much letting go with dementia ā itās costly, with an on-going sense of bereavement.
With Alzheimerās Disease, youāre likely to notice the impact short-term memory ā so facts, names, dates may all be muddled and in due course lost. Ā But the heart level, the feelings, the love can guide us forwards: āwhere there is knowledge, it will pass away⦠these three remain: faith, hope and love. Ā But the greatest of these is loveā (1 Corinthians: 8&13).
In our family, the connections are so different now from those of ten years ago ā but the life and the love is still there, to be glimpsed and relished.Ā So my dad, who in his days as a solicitor taught me so much about incisive head-level analysis, continues to teach me so much in this zany, haphazard journey of the heart that we all share together.Ā In the words of the poet Malcolm Guite, from his Stations of the Cross sonnets (Station X, where Jesus is stripped of his garments):
āNow is the time to loosen, cast away The useless weight of everything but loveā.
Iāll always be grateful to John and Margaret Bridgman. They invited me to join Margaret at āSinging for the Brainā a year or two back. Thereās no differentiation between volunteers, people living with dementia and their families and friends and carers: you look round the circle and simply notice that everyone is having a wonderful time together.
Thatās the feeling we all value so much ā and itās inspired the monthly Forget-me-not tea for people living with dementia and their carers that we now hold in St Andrewās Church, Shifnal. Thatās properly inclusive. And it takes us to the heart of our faith:Ā we are all valued equally as children of God.
Churches Together in Whitchurch, north Shropshire, has recently started a new group called āForget-me-not Time Togetherā. Ā Thereās a warm welcome the moment you come in, thereās music playing in the background and there are name badges for everyone.
People are free to look at books or get involved with jigsaws or colouring, or simply to chat. Ā And thereās a different main activity each time the group meets ā sometimes singing, sometimes art or craft, sometimes baking or making. Ā So when I was there last month, Chris played his guitar and we all sang a good range of songs, from Cliff Richardās āSummer Holidayā to āMichael rowed the boat ashoreā and āIf youāre happy and you know itā ā with actions! Ā And thereās tea provided ā a cuppa and cakes.
What strikes you is the friendly informality, with everyone enjoying a lovely relaxed afternoon together. With dementia, itās all too easy for people to feel lonely and isolated, embarrassed to go out. Ā An Alzheimerās Society survey of people living with dementia confirmed that 61% feel lonely and 44% say theyāve lost friends. Ā And a Carers UK survey tells us that 83% of carers have felt lonely or socially isolated as a result of their caring responsibilities.
Time Together is a wonderful, practical way of confronting those challenging statistics. How strong to stay in step together, supporting one another as patterns change, being there for one another. In one sense, itās simple: but itās also profound, getting to the heart of things. I donāt think there can be a better way of becoming a moreĀ dementia-friendly church at the heart of a more dementia-friendly community.
Iāve also been inspired by Josie Edwards, the co-ordinator for St Matthewās Church, Donnington Wood with a local residential home for adults with complex needs.
Josie came along reluctantly to a āDementia-Friendly Churchesā course. But she immediately connected with something she heard there.Ā We talk about meeting people where they are, as the dementia progresses ā ācrossing the bridgeā to meet people in their world, rather than trying to drag them back into ours. So Josie and her partner Chris are now experimenting with different ways of making connections: they were bowled over by the transformation when they took along a tape of 1960s music, drawing out a response in a way that a waterfall of words may not.Ā Recently, they have tried some church window artwork at the home.Ā You can see the beautiful results: you can see the light shining through.
In our churches, we have so much to offer to people living with dementia and their families and friends ā and we have so much to learn from them too. Ā Itās a journey from head-level belief and doctrine to heart-level belonging, being with one another. Ā These practical ways of trying things out really encourage me to try out ideas and notice when they open up life-affirming connections.Ā I hope youāll be inspired by them to try out something new in your church, looking for the doors that may open.
Sarah Thorpe is Lichfield Dioceseās Dementia Support Worker in the Shrewsbury Area.