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
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
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
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
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
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
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
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
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
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
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
Dementia Awareness Week runs from 18 to 24 May:
www.alzheimers.org.uk. For more information on the
Dementia-Friendly Churches initiative, visit
To find out more information about Dementia Friends, visit
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.
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.
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