‘Although the number of those living with dementia is growing, the condition is not a new concern.’

There won’t be a Quaker Meeting in the country which isn’t touched by dementia, says Barbara Davey

Earlier this year, Faith in Older People (FIOP) published a learning resource, One Step at a Time, to assist churches in supporting people with dementia. A recent conference, hosted by FIOP together with the Church of Scotland Guild, was an opportunity to share experiences and learn from one another, particularly around issues of worship and pastoral care. I was invited to offer a Quaker perspective.

With over seventy delegates from across Scotland, the room was full to bursting, and there was an energy and concern to engage with the subject. The authors of the resource began by introducing its guiding principles: Is our place of worship ‘emotionally safe’? Are people welcomed not ignored, included not excluded, valued and respected rather than regarded as a nuisance or an embarrassment?

The authors also outlined the four key areas of their framework – people, places, resources and community – and posed some challenging questions for discussion:

• Do all members of our community understand what dementia is?
• Is the toilet easy to find and safe to use? (Older people need to find the toilet quickly; consider the signage.)
• Do we include people with dementia and their families in existing activities?
• Do we know what dementia resources there are in the local neighbourhood?
• Are our pastoral visitors confident and comfortable about spending time with people with dementia when conversations may be fragmented, limited or nonexistent?

There followed a series of short and enthusiastic contributions describing what various congregations are doing as they reach out more widely, including: lunch clubs, singing groups, walking groups, ‘Heart for Art’, ‘Godly Play’, and ‘Music and Memories’. There was a real sense from the speakers that their communities had been led to explore what a living faith might mean, and to look with a critical eye at the physical environment of their place of worship.

There were also two longer presentations. Catriona Robertson, an Anglican lay reader from Stromness, gave a talk – ‘Worshipping with people with dementia’ – that was imbued with a concern for worship, which should be engaging and beneficial. In ‘Pastoral care at home or in a care home’, Dean Fostekew, a canon from Edinburgh, spoke about the privilege and joy of his one-to-one visiting. I was humbled to hear how he endeavours to see the person he is visiting as they have always been, and continue to be. He talked about being there not for them, but with them, and about giving back to those he visits a sense of their own ministry.

My own talk began with how the opening words of chapter ten of Quaker faith & practice (‘Our community’) continue to be an inspiration for us: ‘Our life is love, and peace, and tenderness, and bearing one with another…praying one for another, and helping one another up with a tender hand.’

There won’t be a Quaker Meeting in the country which isn’t touched by dementia. We know there is no cure, only care, and, as in any other faith community, we endeavour to care for one another with love and compassion. Encountering dementia can seem a hard and stony road, often a lonely road, so I hope our Quaker communities are places where we can be honest and find fellowship – be nourished and sustained.

I outlined briefly the work of Quaker Life, the Quaker Mental Health Forum and the Quaker Mental Health Group (whose booklet Dementia in our Meetings will, we hope, soon become available). There was an accompanying table display of relevant Quaker materials including the booklet Mental health in our Meetings, which I heartily recommend.

I then offered a short personal reflection on aspects of Quaker worship and dementia. Although the number of those living with dementia is growing, and some say there is a crisis in our midst, the condition is not a new concern. In Quaker faith & practice there is a moving passage, written in 1714, about the old age of William Penn: ‘His memory was almost quite lost, and the use of his understanding suspended; so that he was not so conversible as formerly; and yet as near the Truth, in the love of it, as before.’

It was important for early Friends to acknowledge the reality of William Penn’s old age, and those last words are significant because they show that Friends felt this final stage of his life had spiritual value, however lost to the world he may have appeared. The insight is full of riches but, I’ll admit, it is hard for me to hold on to this when a life can appear so diminished.

The account goes on to describe ‘an evening Meeting we had together there; wherein we were greatly comforted’. Quaker Meetings for Worship are simple affairs. Worship can come as a gift, responding with our hearts, and if you’re experiencing dementia you can be just as much part of it, however poorly your head may be functioning. I have, however, known Friends with dementia for whom Meeting for Worship becomes a space they are no longer comfortable in.

For me then, it is more about sitting alongside people, usually in a care home – sitting in solidarity as it were, being a bridge to those things which are eternal, for those who have no bridge. No words are necessary, which is why I like the image of a bridge.

I try to share a sense of resting in God, and God resting in us. I try to accept what the Spirit enables each of us to be at any given moment.

Having faith is not the same as having the certainty of belief. Dementia may seem a dark place, but who can know what might be going on in that darkness? The Spirit has a way of working out of our sight. If we ‘walk by faith, not by sight’, as St Paul says to the Corinthians, who knows where we may be led?

I was grateful for the opportunity to share these reflections, and grateful for FIOP’s continuing work on dementia. May we all uphold its efforts in this. The title of FIOP’s resource, One Step at a Time, brings to mind the opening page of the poet and writer Lemn Sissay’s collection Gold from the Stone:

“How do you do it?” said night, “how do you wake and shine?”

“I keep it simple,” said light, “one day at a time.”

I was glad to attend the day in Edinburgh; I hope my account might encourage Friends and Meetings to reflect on dementia, community and their faith.

The One Step at a Time resource can be found at www.faithinolderpeople.org.uk/project/one-step-at-a-time

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