Thought for the Day

Thought for the Day, broadcast on The Sunday Programme, BBC Radio Kent, at the end of Dementia Action Week, 26 May, 2019

Last Sunday at Gravesend Methodist Church we shared lunch together, and each table chose a reading and a hymn to present to the whole congregation in a short tea-time service. My group happened to choose the liberation of St Paul from prison - Paul was in prison but one night an earthquake shook its foundations and his chains literally fell off. As the accompanying hymn  we chose ‘And can it be?’, which includes the memorable words “My chains fell off/ My heart was free” – a hymn in which our accomplished organist Bruce Davis pulled out all the stops and helped us raise the roof. During quieter moments over the past week the image of chains falling off has led me to reflect on the ways in which all of us may unwittingly place imprisoning chains on people around us.

For instance, we may for instance forbid our children from playing in the street when it would actually be in their best interests to enjoy more freedom to explore the world. Another way is in our behaviour towards people with dementia. 

Knowing someone has dementia can cause other people to keep that person at a distance, even cold shoulder them. It’s easy to see why. You may meet someone with dementia and face  silence because they don’t do small talk and ask you about your job or the state of your garden. They’ve become unable to assemble the thoughts and words necessary to initiate a conversation. As the illness progresses, they may forget much of their vocabulary and as a result risk becoming very lonely. 

To break through the isolation of someone who now inhabits a different mental universe from yours often means laying aside your own social inhibitions, even if you risk looking foolish. At its most extreme it may mean going along with the illusion your 90-year-old mother holds that you are her mother while she a young woman, just starting work and behaving accordingly. But if you can’t proactively enter her world she will continue to remain imprisoned in her own isolation. She has an illness. The power resides with you, not her, to break those chains.

My Name is Not Dementia is the name of a report which challenges the labelling of a person by the dementia they happen to have, and to point out that, contrary to popular belief, people with dementia retain a great deal of what it means to be a human being. Although their ability to compile a shopping list or make a cup of tea may have gone, they keep many things including their sense of humour, their sense of right and wrong, and their emotions so, for example, their ability to experience pleasure at a dazzling sunrise or pain at an unkind act.

As no cure for dementia is on the horizon and medical treatment is limited to delaying or blunting some of the symptoms for some of the time, the quality of life of people with dementia turns and will turn in the foreseeable future more than anything else on the attitude of the people around them. Leading thinker in the field Professor Tom Kitwood has argued that what people with dementia need more than anything else is love, and that we  can help them by fostering their attachment to other people, their identity – so that they feel they belong somewhere; comfort – so the provision of warmth; and occupation – as the need to be doing something seems to be an instinct we all share.

Last week someone wrote to me from Wimbledon, after I’d given a talk about dementia at the public library, saying, “I’m at present visiting a lady who used to be a regular member of the church choir until she had to be admitted to a care home.  She has dementia and her short-term memory is very bad.  She’s always very glad to be collected and brought to church events as it reconnects her to what she calls “ordinary life”.

Members of faith groups can also of course simply visit people in care homes, take them out into the home’s grounds or into the world beyond the home. Or watch a film together perhaps. Although people with dementia don’t lose their sense of humour it often changes so while they wouldn’t enjoy a satirical comedy, they would enjoy slapstick like Laurel and Hardy or the Chuckle Brothers. 

Twenty years ago churches in Eastbourne got together to ensure services were offered in every care home in the town and their organization, PARCHE, publishes useful books of suggestions for the content of services. I heard last week that The Girls Brigade of Northern Ireland has just developed a badge in dementia in which girls and young women develop their understanding of the condition and seek to improve the lives of people in their communities, often by visiting people in care homes.

When Jesus said, “Love your neighbour as yourself”, He was promptly asked, “Who is my neighbour?” He famously replied by telling the story of The Good Samaritan – someone who put himself out to help a stranger who’d been mugged on a lonely road. To be Good Samaritans here in Kent we could look no further than the 24,000 people in the county who live with dementia. Could you reach out to one of them this coming week and in the process remove some of those invisible chains which stop them living their present life to the full?

References

Williamson, T (2010) My Name is Not Dementia, London: Alzheimer’s Society

Kitwood, T (1997) Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press