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Offering refuge in the familiar

by
16 May 2014

Dementia Awareness Week starts on Sunday, prompting Pat Ashworth to discover how one diocese, Lichfield, is encouraging parishes to create dementia-friendly churches

SHUTTERSTOCK

PEOPLE with dementia remain capable of giving, and receiving, love. And the Church should encourage the development of relationships through which such love can be expressed, the Revd David Primrose, the director of Transforming Communities, in the diocese of Lichfield, says.

More than 25,000 people in the diocese already have a diagnosis of dementia, and almost as many families are affected, through the provision of informal care and support. Mr Primrose calculates that, as a result, few in Lichfield's 425 parishes are strangers to dementia, either directly or indirectly. The pastoral ministry of the parish church in these instances is becoming increasingly important, he says, as families become more dispersed, and the state's resources become more limited.

Lichfield has been doing pioneering work in this field since 2012, when the diocese set out to develop dementia-friendly churches. The move synchronised well withthe "Dementia Friends" initiative, backed by the Prime Minister, in which Public Health England and the Alzheimer's Society (AS) have joined forces in an effort to make one million people aware of the illness, and commit themselves to simple ways of providing care and support.

The common attitude to dementia is best encapsulated in the comment of a participant at a recent forum that I attended, for those Lichfield churches that have become involved: "To many people, it's an unknown: they don't know how best to handle it," he said. "They are conscious of the pitfalls, but they don't know how to act wisely."

Mr Primrose took part in a Dementia Friends training day, devised and led by the AS, and thus became a dementia champion, able to disseminate what he had learned. With support from the AS, and also from the charities Approach, and Livability, who both offer practical advice in this area, he developed a four-session training course to explore what it means to be a dementia-friendly church.

More than 70 individuals from 26 churches took part in the course. Most, like Sarah Thorpe, of St Andrew's, Shifnal, in Shropshire, had direct experience of dementia; and the church of which her husband, Chris, is the Vicar has embraced the notion of being dementia-friendly.
 

MRS THORPE says: "My father suffers from severe dementia, and we have been travelling that journey as a family, appreciating how much community engagement matters, and all the connections that can still be made, which become increasingly significant. It led us to thinking about what we offer as churches.

"We have buildings. We have people with a heart for the whole issue of dementia in the different communities. . . So we thought we would just open the doors, and see what happened."

The church started monthly cafe-style "Forget-me-not" teas for people in many different situations. Some have dementia themselves, and some are caring, or have cared, for a partner or family member with the illness.

A number are at the early stage of diagnosis, embarking on a journey with many unknowns. "We don't have any sense of 'them' and 'us'," Mrs Thorpe says. "It wouldn't be immediately apparent who is living with dementia, who was or is a carer, or who is a volunteer - we just enjoy a happy afternoon together."

The afternoon incorporates prayer and singing sessions, using familiar hymns - the same prayers are said each time, for connectivity. The hymn "Bind us together" has become the theme tune, with an added verse that includes the words "We are all in one boat, afloat in God's ocean of love."

"There is a lot of letting go with dementia, an acknowledgment that the pattern of life is changing, but that we are trying a new pattern suited to now," Mrs Thorpe says. "It's not always easy, but it is ultimately letting go into love."
 

THE diocese also runs expert-led sessions on the early stages of dementia, "Don't Bottle It Up", one of which takes place during Dementia Awareness Week, which begins on Sunday. And momentum is building, as the word spreads. A neighbouring church, St Mary's, Allbrighton, has replicated the "Forget-me-not" tea, and there is to be a stall at the Farmers' Market, together with displays in the library and shops.

All of this is music to the ears of Mr Primrose and others, whose aim it is to see churches working in this way. He says that, within a church community, people understandably become valued for the contribution that they make. When the onset of dementia places limits on that contribution, they can easily become less valued by the church community.

"Individuals with dementia risk have their identity based around being the recipients of care," he says. "This is the challenge to every church: to ensure that it is based on a community of love and acceptance rather than structured around performance evaluation."

Churches face common dilemmas such as this, and these were aired by participants at the Lichfield forum: "We have someone in our congregation who has increasing signs of dementia, and has no idea of the day of the week," one said.

"We have been trying to contact her, and ringing her up to see if she would like to go to church, reminding her that she can continue to do the things she has done for 40 years, and which form a major part of her identity. It's becoming increasingly severe. How can we support her?"

 

THE course asked churches to conduct an audit, in order to help evaluate how dementia-friendly they were. The audit asks questions, first, about the practical environment of the church building, such as what messages are conveyed by its furnishings.

"Some churches are fantastic historical buildings that ooze with pictures of Jesus and statues of Mary - all the stuff that says to people brought up in the British culture that this is a church building," Mr Primrose says. "In a more modern building, you have to ask: What are the visual clues that say you are a church rather than a community centre, or a shopping mall? Your church may be saturated with them, or you may need to make sure you are intentionally providing them."

Signage is important here, too -something that has been addressed at All Saints', Streetly. The church could tick off "churchy features", such as stained-glass windows, crosses, crucifixes, and a font, Sue Hall, who undertook the audit, says, but it has, for instance, added helpful, pictorial clues to the lavatory signs. Others at the forum had identified and rectified obstacles.

Church services are another part of the audit. It addresses their variety, the use of appropriate liturgy, ritual, and sacrament, and the mention of dementia within intercessions.

Mrs Hall described their service booklet for the Tuesday-morning eucharist - a quiet, said service in traditional language - as having been "a bit disjointed. You have to respond to what the priest is saying, and you have to be quick; so we have done a booklet that will have the service in its entirety, and make it easier for people with memory difficulties to follow."

Aware that some people with dementia will struggle with large amounts of content, several churches are redesigning service-sheets to include illustrations as prompts: a picture of the Bible for the Gospel, an illustration of the Host for the eucharist, for example.

Dress is a factor, too - given that those with dementia tend to be older people who, as Mr Primrose puts it, "remember the days when vicars dressed as vicars. If they don't, if your vicar turns up in a smart suit or a pair of jeans on Sunday . . . there may be an extra step for the person with dementia to recognise."
 

ONE participant at the forum reported that attendance at one care-home's regular service had dropped off, until the minister began to dress in recognisable black and white, when attendance increased again.

When it comes to church services, it should not be assumed that what works for one person with dementia will work for another, Mr Primrose says. "Sacrament, ritual, and traditional liturgy can be very important for people with dementia: things that go beyond the verbal into embracing the whole of the person. But everyone has different spiritual tastes."

All Saints', Streetly, is also working hard, as a result of the audit, to raise awareness, and its activities for Dementia Awareness Week include a Saturday-morning seminar in church, with a panel of expert speakers. A carer from the local Dementia Support group will be describing her experience in a question-and-answer session.

Other initiatives include a service designed for people with dementia and their families, and a tea dance for members of the support group, and the church congregation.

Another section of the audit, pastoral care, acknowledges the long-term demands of support for those with dementia. "It's a progressive illness, and a person's ability to cope will change and deteriorate," Mr Primrose says.

"The person who comes on their own now might not be able to in six months' time. We have to have the confidence when we start supporting someone to say, 'This is for the long haul.' We have to pace ourselves so that we are faithful for a long period of time."

He emphasises the importance of linking with other dementia charities in the area. Churches are embedded in the community, he says, and have a network of relationships, enabling them to say to a body such as the Alzheimer's Society, which is keen to support churches, "We have stuff to offer; you have contact with people."

In Lichfield, in recognition of the fact that everyone makes their own spiritual journey, they are introducing a "passport" - a single-page record for existing members of the church family to record aspects of their spiritual heritage, such as favourite hymns, Bible verses, special places, perhaps the name of an individual who helped to shape their spiritual journey.

This can be shared with priests and ministers when people move away, or into residential care. "People can then very quickly engage in spiritual matters by coming back to aspects of things that are important. It's a practical health tool," Mr Primrose says.

Other dioceses have seized the baton from Lichfield. The Church's Community Care Adviser for the diocese of Guildford, Tony Oakden, has a background in residential care for the elderly, and, like Mr Primrose, took and broadcast the training opportunity offered by Dementia Friends, which can be tailored to churches. "It's about telling people to think about what they could do to make a difference, and what we as a church can offer," he says.

"It's to try and demystify dementia, which has been described as the new 'C' word. We have done so well with cancer. The message Dementia Friends puts out is that, yes, dementia is progressive, but, with the right support, people can live good and active lives."
 

Dementia Awareness Week runs from 18 to 24 May: www.alzheimers.org.uk. For more information on the Dementia-Friendly Churches initiative, visit www.livability.org.uk/church/dementia-friendly-churches.

To find out more information about Dementia Friends, visit www.dementiafriends.org.uk.

 

1. Be positive

It is easy to think of what people with dementia cannot do, rather than what they can. Negative assumptions can inhibit them from doing everyday activities, or make them give up trying,
 

2. Support choices

While people with dementia sometimes have difficulty making choices, many can be supported to make their own decisions.
 

3. Listen

People with dementia sometimes find it difficult to tell others what they want. It is important to listen attentively to what they are saying, and avoid correcting them. This will help them feel valued and respected.
 

4. Observe

People with dementia often use their bodies to help them communicate. Sometimes you can read what they are sayingin their faces, or in their actions.
 

5. Mind what you say

Simply that a person has dementia does not mean that he or she cannot understand what you say. Be careful notto be disparaging: comments of this kind can be discouraging and hurtful.

These hints are provided by Liveability, which provides support and resources to help churches become dementia friendly. For more information, call 020 7452 219 or visit www.livability.org.uk/dementia-friendly-churches


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