On Saturday 26th November 2016 the church hosted the first of three days with this title, organised jointly by the South Western Synod and the Diocese of Bath & Wells. Sue Ingham and Peter Henderson were among those from the church who attended. Here they offer a summary of what they learned.
Dementia describes a set of symptoms resulting from a variety of diseases which affect the brain, e.g. memory loss, difficulty in thinking and problem solving, lack of trust, loss of self esteem, confusion, fear, vulnerability. Over the years the sense of fear has changed; 30 years ago our biggest fear was cancer, today it is dementia. We live with fear: fear about accepting a diagnosis, fear of how we will cope, and how our families will be affected. However, an early diagnosis is to be encouraged, as medication can help.
It is not a universal symptom of those living with dementia, nor by any means the only one, but memory loss is very common. So it helps to understand how the disease affects the brain. Imagine that a person’s factual memories are like books arranged on a tall bookcase, with the earliest memories on the bottom shelf and the most recent at the top. The diseases that cause dementia have the effect of shaking the bookcase, as in an earthquake. It is the books on the upper shelves (more recent memories) that fall out. Emotional memories can be thought of being on a separate and much more stable bookcase, so they are more likely to endure.
What would a Dementia Friendly Church look like?
It would be: Positive, Realistic, Optimistic, Encouraging, Supportive, Patient, Accepting, Accessible, Part of the wider Community.
Positive: For a person living with dementia, we need to ask them what they can do and encourage them to continue to do it. It may take a bit longer but don’t hurry them. They may be able to welcome people, chat to them, and listen to others. Those who visited people with dementia found that what they missed most was going to church (if that had been their practice). Some could not follow a service but, when it came to the Lord’s Prayer, they could join in; it had been part of their life and the memory was there.
Realistic: Dementia results from progressive illness but it does not always run in a straight path – there may be good days and bad days – so we have to be aware of how people are when they are with us.
Optimistic: With support let the person carry on with what they can do, – e.g. welcome at the door, serve tea; involve them in a prayer ministry if they wish – and being part of the church, e.g. in the Church Council, on committees. This may need a little adjustment but it is also a challenge for everyone.
Encouraging and Supportive: Make sure that the person feels comfortable and supported. There is a real risk of loneliness so continued support is essential. Never make jokes about “being forgetful” and remember that making decisions may be a struggle.
Patient and Accepting: Take time to really listen and engage with the person. It may take them longer to express themselves as they struggle for words, so do not interrupt or finish the sentence for them. Be aware of your body language and theirs. They may feel threatened by the way you stand and look. They may not be able to find words but that does not mean that they cannot read. Someone with dementia may say things that are inaccurate but resist the temptation to correct them as this can cause distress. Never talk about them in their hearing.
Accessible: See Dementia-friendly buildings later
Part of the Wider Community: Churches are an important part of the community, but can’t provide limitless support. So it is useful to find out what else is going on in the community e.g. Memory Café, Singing for the Brain (Alzheimer’s Society run both regularly at St James’ Church).
Talk with people who have dementia to see what they would like in worship, or how it is done. Short term memory loss is often a problem, so adapt should be considered. Here are some ideas.
Have worship for 20-30 mins then have a coffee break, follow it with a more formal sermon, Communion. Nothing too long, or too in depth.
Have a special dementia-friendly service with another church. Hymns from the 30’s, 40’s and 50’s will be remembered better than the newer ones; there may be emotional memories of the older hymns. Make use of poetic versions of traditional words; use a Children’s Bible. For stories use today’s language. Include the Lord’s Prayer and the Grace. Make use of symbols such as the cross, candles, incense, harvest items, nativity figures.
Think about how the carers (who may be paid) can be supported when they bring a person with dementia to church, especially if they have no belief or another faith, and how we can accommodate both older people and children.
Regarding the Lord’s Supper, a church needs to be aware that a person living with dementia may have difficulty with eating or swallowing, or unable to hold the elements.
Movement during the service: be open to people getting up and walking around during the service, needing to go to the toilet.
After the service: ensure that people are able to reach the refreshment area unaided. Confusing spaces and a lot noise can be disorientating.
An accessible church building will have entrance, toilets, and refreshment area clearly signed, and steps will be clearly marked. Heavily patterned flooring coverings can create the illusion of obstacles or holes. Toilets decorated so that there is a defined colour contrast between the walls and the toilet seat will reduce the risk of disorientation.
A loop system can help users of hearing aids to filter out confusing background noise. For meetings it is best to avoid large, echoing spaces.
Some people with dementia have reduced control of body temperature, so will be more comfortable with a room that is warm in winter and cool in summer.
A church available for informal quiet prayer outside of service times can offer a welcome sense of peace.
A dementia-friendly church is one that is welcoming, understanding, and hospitable to particular people. Consideration of how to do this is simply one aspect of building a community for the great diversity of people. So, in a positive spirit, we talk about living with rather than suffering from dementia, for our aim is that of Jesus, that we may all live life to the full.
Copies of ‘Developing a dementia friendly church – A practical guide’, published by Livability, can be ordered on their website.