On Sunday 8 March 2020 Rev Deborah gave this moving address on the theme of dementia. You can read it again here:
Beginning of the service
Today in our service we are going to focus on raising awareness of dementia as part of our year of service and explore how we can be dementia friendly.
We will all have different starting points and different experiences of dementia. For some of us these will be at ‘head’ level – about facts and information. For others, our starting point will be at a ‘heart’ level – a particular person, specific stories of how we are affected by dementia – either now or in the past. I realise that this might be a difficult subject for some of us. If anyone does want to talk about any issues personally, I will be available after morning prayer from 9.00-9.30am or alternatively, give me a ring and we can arrange an alternative time. You can also contact me via the website.
Whenever I plan a sermon, I start by praying and then read and reflect on the readings of the day and the themes. Today’s readings are about journeys. In the first reading we hear about Abram going on a journey, leaving Ur and travelling to a new place. In the second reading we have a journey of faith – Abraham’s faith through the grace of God. In the gospel reading we have a journey of questions, as Nicodemus explores the nature of Jesus, as he struggles with the physical and spiritual. Jesus and Nicodemus are in two different places, with Nicodemus finding it difficult to understand the world that Jesus is in. The passage culminates in what Martin Luther calls the gospel in a nutshell, John 3:16 ‘For God so loved the world that he gave his only Son, so that everyone who believes in him may not perish but may have eternal life.’
As I mentioned earlier, today we are going to raise awareness of dementia. Dementia is a journey into the unknown for both those living with dementia and for family, friends and carers. So, what is dementia? Dementia is an umbrella term covering a range of over 100 different brain diseases. Alzheimer’s is the most common one, accounting for 62% of those diagnosed. Vascular dementia is the next most common at 17%. There are currently 850000 living with dementia in the UK, with that number expected to reach one million by 2025 and two million by 2050.
There are a whole range of symptoms when someone has dementia depending on which part of the brain is affected. These include
- Memory loss, especially the short term memory
- Planning, organising and sequencing can be affected.
- Language and being unable to recall familiar words
- Perceptions of objects can be changed,
- Mood and behaviour can be affected.
Memory storage book case
The storage of memories is like storing books in a bookcase.
- The most recent memories are stored on the top shelf.
- Childhood memories are stored on the bottom shelf.
- Teenage memories on the next shelf up.
- Memories from middle age on the next shelf
- And retirement memories on the next shelf up.
Dementia has the effect of wobbling the bookcase and the first books that fall off are those on the top shelf, the most recent memories. As the dementia progresses it is as though the top shelves start to disintegrate so it’s no longer possible to store books on them so its natural for someone to return to the lower shelves, the earlier memories. When they return to those shelves, they find the memories still there, the books in their expected order which accounts for the time warp conversations that we can sometimes have.
Taking the picture even further, our memories are made up of two elements – the facts – names, dates and place stored in one part of the brain, the hippocampus. There is a corresponding feelings books, which are stored in a different part of the brain, the amygdala.
The facts bookcase is more flimsy than the feelings bookcase. It is much more resilient when the wobbles of dementia come along. So even when the someone can’t remember the facts, the feelings remain.
Christine Bryden lives with dementia and has written a book called ‘Dancing with Dementia’. You can hear the journey from head to heart in her opening words:
‘As we become more emotional and less cognitive
It is the way you talk to us,
Not what you say that we will remember.
We know the feeling, but we don’t the plot.
Your laugh, your smile and your touch are what we connect with.
Empathy heals. Just love us as we are.
We’re still here, in emotion and spirit, if only you can find us.’
Most of us have heard of Salford lad Christopher Eccleston, especially if you are a Dr. Who fan. His father, Ron, had dementia. He eventually learnt that instead of trying to pull people with dementia into your world, you have to enter theirs. He was on holiday with his parents doing the Guardian crossword with his dad. The clue was dictator, six letters and his dad answered ‘despot’. As Christopher wrote it down, his dad stared at him and asked, ‘are you related to me?’ He said ‘yes, I am your son’. His father didn’t believe him and said to his mother, ‘He says he is my son, but I know nothing about it.’ . From that moment on, Christopher stopped insisting he was his son and became his friend.
He salvaged a loving relationship , and for him and his brothers, it could be quite humorous. But for his mother it was much more complex. From the day he was diagnosed until the final year of his life she cared for him in their house. After he died she said to Christopher, ‘the worst day of his life was not when his father died, but when I had to put him in a home.’
Christopher describes his mother as the most caring person on the planet, but it was an emotional and physical grind. Carers are not recognised for the financial and practical support they provide. His mother did get some respite, but it was difficult because her husband always wanted her and she would suffer when they were apart, wondering if he was eating or if people were being kind. One day she asked him, ’Ronnie, do you know who I am? He said, ‘I don’t know, but I love you.’
So, where do we go from here? What can we do to help and support those living with dementia and their carers?
Today has been the opportunity to raise awareness.
Currently some of us have undergone the diocesan training and hope to do the additional training to become dementia champions.
We hope to become a dementia friendly church. The diocese of Lichfield have produced an audit, which looks at pastoral care, buildings, church services and community networks. The Way Forward group and anyone who is interested in dementia, including carers and those living with dementia is invited to come along as we work through the audit. It is important to listen to those with dementia and their carers. To this purpose, Bury is setting up a couple of meetings in the next week to explore what can be done by listening. Hopefully this will feed into our discussions. This will then be reported to the PCC and from this we can identify ways some practical steps towards becoming a more dementia friendly church. There will be the opportunity later in the year to become a dementia friend if you want to.
We hope to establish a group that helps to alleviate social isolation, including those with dementia and their carers. We have received a grant from Park Life to that effect. I
Hopefully, in the future, there will be the opportunity to promote a dementia friendly community in our area of Prestwich.
As Abram set off into the unknown, we want to walk alongside those on the dementia journey – both those living with dementia, family, friends and carers. We want to be able to support them physically, emotionally and spiritually on their faith journey and in their journey of questions. Like Nicodemus, there may be lack of understanding and questions on that journey but the John 3:16 verse in our gospel reading gives the hope, courage, grace and love that we need.
‘For God so loved the world that he gave his only Son, so that everyone who believes in him may not perish but may have eternal life.’
God’s love is for all. Each one of us is unique, valued and loved, whether we are living with illness or not. His love is so great that Jesus died for each one of us, that we many have life. Our loved ones and friends may be going through the difficult journey of dementia, or caring for a loved one, but this verse reminds us that God’s love is constant, both in this world and in the next.
The symbol of dementia is a ‘forget-me-not flower’. There are forget-me-not flowers that are in both church gardens. May they be a reminder to us and encourage us as we seek as a church to support those with dementia and their carers.
Let us pray,
Friend of the friendless, you went out of your way to find the lonely and the lost. Grant us compassion and insight to feel what it is like for someone losing their memory, increasingly adrift in a once familiar world. Let us be the ones to hold out a hand that can anchor them to the life and friendships they know.
Grant us wisdom to see how we can help carers and the will and energy to act on that knowledge. Save us from being those who pass on the other side of the road.
Lord, you were always ready to speak out for those in need. Guide us to find out more about dementia. Give us the commitment to be dementia friends and to advocate greater understanding in our community.
May we have your courage not to back away from the familiar, but to reach out a hand of love. Amen