How chaplains and the Mothers’ Union support dementia patients in hospital

Regular visits to hospital can be stressful times for people living with dementia. The Revd Peter Wells, Lead Chaplain at Brighton and Sussex University Hospitals NHS Trust, describes the ‘ministry of presence’ chaplains and volunteers offer.

 A phone call from a relative: “Could you please visit Mum, she’s in the dementia unit. I don’t suppose she will know you’ve called.  She used to go to church and we think it might help her if you visit.  Nothing seems to help her but you never know. Many thanks”.

A conversation with one of our volunteers: “Why do we bother to visit people on the dementia unit?  what is the point if they don’t respond, don’t remember and don’t seem to take much notice”?

A chat with the ward staff: “Mrs Smith does not recognise her family any longer. She stares into space.  She smiles but nothing else.  It all seems such a shame and so disappointing for the family”.

The visit to Mum, Mrs Smith: “Hello Mrs Smith, I’m from the chaplaincy team. Your daughter asked if we would visit. Apparently you used to go to church. ( no response except for a brief smile. )  I thought I would read the Psalm 23 and read the words of a couple of favourite hymns.   I hope this is OK with you’?  The Psalm and hymns are read.  The response, little more than a smile.  We sit in silence for a while. “Mrs Smith I am going to go now.  Please be assured that you will be in my prayers.  One of us will pop in over the next couple of days.  We will keep on visiting as long as you are with us”.

The response is not so important.  What is more important is the recognition that here is a meeting of two people made in God’s image.  None of us is the perfect image of God.  We meet each other knowing that no one is perfect.  We meet each other on this journey called life.  Whatever happens to us, people deserve to be met.  Everyone has a life to be honoured.  Everyone has a life to be acknowledged.

The chaplaincy is a ‘Ministry of Presence’.  Being present with anyone and everyone.  Acknowledging our shared humanity, and shared createdness, our shared journey.  A presence that is as much for the patient and relatives as it is for the staff.

Mothers’ Union groups help us with the recognition that people with dementia still need to be valued, and when it is hard for the family and friends, we offer our support.  One MU group makes the most wonderful and inventive ‘fiddle-muffs‘ so that patients can feel, stroke, pull, hold, cuddle a muff made out of different wools and materials.  Once given the muff belongs to that patient and to that patient only.  The muffs can give a sense of comfort, control, value in a world which appears to have lost its meaning.  Men or women can use the muffs but the muffs seem to be more popular with the women so ‘switchboards‘ have been made for the men with switches, buttons to pull and press.  Relatives and staff are so impressed that people have taken the time to make the muffs and boards.  Someone has bothered to think of the needs of others.

Another MU group bakes a cake once a week that is kept for a weekly tea party on the dementia unit.  Real home-made cake, a taste of home for patients and relatives.

A ‘Ministry of Presence’ in so many ways, whether outwardly in the form of chaplaincy team members and MU members, or in the form of cake, fiddle muffs or switch boards, what does it matter, as long as you do it to the least of those amongst us, you do it to Me, recognising the divine and human in all of us.

Revd Peter Wells
Lead Chaplain at Brighton and Sussex University Hospitals NHS Trust

Listen to David Primrose, Director of Transforming Communities at the Diocese of Lichfield on why dementia friendly communities are being prioritised in his area.

How and why to embrace those living with dementia in your church

Dementia is a disease which impairs people’s ability to remember, think and make choices. It currently affects 800,000 people in the UK, and that number is expected to double in the next 30 years. As a Christian presence in every community, the Church of England is uniquely placed to help make life better for people living through the challenging times that dementia brings. From, hospital chaplaincy, dementia friendly community choirs, Anna Chaplaincy, to thousands being trained in churches to become dementia friends, the Church is responding. Sarah Thorpe, Dementia Support Worker for the Diocese of Lichfield, explains how on how to make a church service dementia friendly.

My work is centred on encouraging and equipping church communities to welcome and understand those living with dementia and those who care for them. Dementia Friendly Churches are inclusive, accessible and community focused and their worship celebrates the meaningful and intentional relationships we have with God and the people around us.

For people living with dementia, the multi-sensory nature of a church service can be very powerful whether it be the hymns recalled from childhood, the familiarity of the cross or words of the Lord’s Prayer.

I’ve been chatting to a couple of people about dementia-friendly church services this week. St Andrew’s Church, Aston near Telford held a dementia-friendly main Sunday service recently, put together by Rev Leonie Wheeler and Hilary Griffin.  Hilary told me some of the adaptations they made to their service:

  • A shorter, simplified non-Eucharistic service.
  • Simple name badges, to make people easily identifiable.
  • Extra people as welcomers, able to support people during the service and guide people easily to the toilets in the church hall.
  • The St Andrew’s Church Memory Box was left open at the back of church throughout the service, available to anyone who wanted to engage with its contents.
  • Cold drinks were provided at the back of church throughout the service.
  • An initial announcement made it clear that people were free to move about during the service, if they wanted to.
  • Familiar hymns were chosen: “Guide me O thou great redeemer” was particularly commented on as someone’s favourite.  Music is so important, often connecting even when words are fraying at the edges: we have a wonderful resource in our hymns.
  • The talk was simple and short, using an accessible, relevant Olympic theme of “running the race”.
  • The prayers used objects and movement, instead of a barrage of words.  So people reflect on a person or situation they wanted to give thanks for – and then were invited to choose a flower and place it in a vase, as a sign of God’s goodness and our gratitude.  Next, everyone held a stone in their hand, noting a worry or anxiety, before placing it in a basket, as they gave it to God and felt the weight lifted from their hands.
  • The service included the Lord’s Prayer in its traditional form.  This can connect so deeply – even for people who are making few word-based connections.

One daughter has acknowledged, at a dementia-friendly service she brings her mother to, “It’s a real relief to bring mum to a place where people will accept her as she is and I don’t have to feel embarrassed.”

As dementia advances, it’s  important that family and carers can still involve people with dementia in community activities: it’s all too easy for people to become isolated and to stop joining in, because it becomes too much of a stretch.  A Carers UK survey confirmed that 8 in 10 carers have felt lonely or socially isolated because of their caring responsibilities – and a properly inclusive church service and welcoming church community can be a really creative response to that startling statistic.  Others have noted different strengths of dementia-friendly services: “sharing”, “support”, “celebrating”, “community” and “continuity and stability”, as well as “staying in step through changes”.

What other elements might you consider, if you are putting together a dementia-friendly church service? Pictorial signposts on the service sheet can help people to follow – perhaps a picture of praying hands or music, a bible or a candle.

Think about ways of moving from head-level, word-based worship to whole-hearted, inclusive worship. You can include active participation by passing an object round as a key focus, or sharing actions for songs, like “He’s got the whole world in his hands”.  Candles or a cross can provide a clear visual focus.  You could use smell and taste by bringing in a loaf of home-baked bread, fresh from the oven, with the reading, “I am the bread of life” (John 6:35).

Have a look at Livability’s “Top Ten Tips” for dementia-friendly worship and prayer.

Above all, notice the atmosphere of your service: don’t get stuck in rigid expectations or requirements, but value an easy and accepting atmosphere, so that unexpected responses or involvement can be incorporated. So in our church, everyone loved the way Mary engaged with the choir’s singing, as she walked down the aisle after communion conducting happily, spreading smiles to everyone: even at the heart of a formal communion service, we all felt the transforming, present-moment life she brought to our service.

Sarah Thorpe
Diocese of Lichfield

Facing dementia with a loving welcome

Dementia affects 800,000 people in the UK and that number is expected to double in the next 30 years.

The Revd David Primrose, Director of Transforming Communities for Diocese of Lichfield tells us about the vital role churches can play in supporting people living with Dementia.