IN RECENT years, a shadow has fallen heavily across our society. Cancer used to be the disease that the public feared most, says Paul Higgs, Professor of Sociology of Ageing at UCL; now it is Alzheimer’s, together with other forms of dementia.
In part, he says, this is because a condition that was once rare has become much more common, as more people live into their eighties and nineties. The Alzheimer’s Society estimates that about 850,000 people currently have dementia in the UK (including more than 42,000 under the age of 65). That number is projected to almost double by 2040.
There is another factor that makes this shadow even darker. When the welfare state was set up, Professor Higgs explains, most people did not live long past retirement. “That model of old age has changed dramatically. Many people now expect to enjoy a kind of ‘ageless ageing’, with a lifestyle that is not very different from that of younger generations.” Sir Cliff Richard and Sir Tom Jones, for example, both have new albums out, despite being 80 years old.
“There is now a massive cultural divide between those people who live in this so-called Third Age, and those who have entered the ‘Fourth Age’, when a real old age kicks in. If you go into a nursing home now, the largest group of people there will be those with profound cognitive impairment. Nobody wants to go there, because it represents the loss of self-conception, of individual agency — and, in a consumer society, that’s really critical.”
In 2012, David Cameron, then Prime Minister, launched an initiative to make the UK a world leader in dementia care. Since then, there has been a concerted effort nationally both to raise awareness and to improve the lives of people living with dementia. The Alzheimer’s Society has promoted the idea of the “dementia-friendly” community, “where people with dementia are understood, respected and supported”, and set about recruiting huge numbers of “Dementia Friends”.
“Dementia Friends is about learning more about dementia and the small ways you can help. From telling friends about the Dementia Friends programme to visiting someone you know living with dementia, every action counts,” its website says.
HOW well has the Church of England risen to this challenge? Dr Katherine Froggatt gave up a senior academic post at Lancaster University in 2018 to lead the work of the Anna Chaplaincy for Churches Together in Cumbria. The Churches have recently completed a five-year project to become dementia-friendly, and now have more than 150 recognised “dementia enablers” in more than 100 locations, one quarter of the county’s churches of all denominations. Dr Froggatt’s assessment is that, in the C of E nationwide, “there are pockets of absolute excellence, and there are places where the issue is not addressed.”
Julia BurnsDementia Enablers support a tea service and fund-raising event for the Alzheimer’s Society, Barrow-in-Furness, in the diocese of Cumbria
The dementia specialist Julia Burton-Jones, Anna Chaplaincy lead for the dioceses of Rochester and Canterbury, agrees. “There’s some wonderful work going on, but there’s still quite a lot of ageism. Churches and dioceses are putting a lot of energy into attracting younger people, but within that narrative it’s easy to neglect the fact that a large proportion of our congregations are older people, and they, too, have value.”
The Bishop of Carlisle, the Rt Revd James Newcome, who is the C of E lead bishop on health and social care, reports that most dioceses have dementia champions — “volunteers and people who are committed to doing something about this” — and that “in different churches, people are responding differently to calls to get involved.”
Professor Higgs suggests that churches “have not really worked out what they think about dementia”. He was involved in research in one of the main denominations, which found that “the families of people with dementia were subject to a kind of ‘othering’. The hierarchy says that the Church has to deal with dementia, but, in practice, the ministers weren’t interested, because they couldn’t see how it would grow their congregations.”
Canon David Primrose, previously Transforming Church and Communities Enabler in the diocese of Lichfield, now Canon Treasurer of Lichfield Cathedral, says that most of the interest and energy exists “at a local parish level”, particularly when someone starts to experience dementia through a member of their family. A handful of dioceses, though, have made paid-for appointments to work in the area of dementia, acknowledging the need for both resources and training to equip people who receive a dementia diagnosis, together with their families and their churches.
In the diocese of Lichfield, efforts began to help churches become more dementia-friendly in 2012, working with Peter Kevern, Professor of Values in Health and Social Care at Staffordshire University.
Sarah Thorpe has been employed as the diocese’s dementia-friendly church enabler since the start of 2015. To date, her team has presented a Dementia Friends Sunday service in more than 100 churches across the diocese, and has built a network of more than 4000 people signed up as Dementia Friends. Currently, 85 churches out of more than 400 also hold Dementia-Friendly Church certificates, and the team has collaborated with nine other dioceses.
“We want to share information with as many people as we can,” she says. “It’s not about being experts, but about understanding enough.” Lichfield’s Dementia-Friendly Church core resources are freely available on their website.
Dr Jennifer Bute (forefront) at a 2017 dementia conference in the diocese of Exeter, with the diocesan Bishop, the Rt Revd Robert Atwell, and other clergy
Mrs Thorpe explains some basic principles. “Dementia is an umbrella term for more than 100 different disorders of the brain. It’s not a natural part of ageing. It’s progressive, but it doesn’t progress in the same way for every individual. Depending on which part of your brain is damaged, it might affect your speech; it might affect your perception of objects; it might affect your sequencing, like knowing in which order to put your clothes on.”
One key understanding, she says, concerns the way in which memories are retained or lost. “Imagine that all your memories are books in a bookcase, with the oldest memories on the bottom shelf and the most recent on the top shelf. When dementia rocks the bookcase, the books fall off the higher shelves first.
“But the analogy goes further: all our memories have a ‘facts’ component that is stored in one part of the brain, and a ‘feelings’ component stored in another part. The facts bookcase is much flimsier, and so it’s much more affected by dementia, but the feelings bookcase is much more solid.”
In Rochester and Lichfield dioceses, activities for people with dementia now include dementia cafés, singing groups, and carers’ groups, as well as inclusive services, drawing on long-term memory to promote feelings of well-being.
Canon Primrose says that any grass-roots response must “involve people living with dementia”, to inform what is relevant and appropriate.
“WE NEED to feel comfortable with people with dementia,” Mrs Burton-Jones says. “So much uncertainty and anxiety is born out of ignorance, which communicates itself to people with dementia and their carers as soon as they go into church. People aren’t sure what to do; so, rather than do the wrong thing, they avoid the person with dementia.”
Sarah ThorpeA Forget-Me-Not group meeting, for people affected by dementia, in the churchyard at St Andrew’s, Shifnal, in Lichfield diocese
Dr Jennifer Bute, the author of Dementia from the Inside: A doctor’s personal journey of hope (SPCK), who retired from general practice in 2009 when she was diagnosed with dementia at the age of 63, was once told by a vicar’s wife: “You shouldn’t come to church if you can’t cope.” She recalls another occasion when she was “humiliated” when a visiting speaker invited “all the people with dementia” to come and sit in the front row, so that they could see and hear better. “We were treated as if we were all completely gaga,” she says.
How people are welcomed into church is really important, Mrs Thorpe says. “Do we look them in the eye and greet them by name?” The worst thing you can do, Dr Bute says, is to ask someone with dementia for factual information. “They’ll freeze inside.”
Dementia can leave people feeling insecure because they’ve lost their confidence in their surroundings, Mrs Burton-Jones says. “If someone has a problem with their memory, one good way to respond to their anxiety is to have someone sitting near by who can gently prompt them, and reassure them, and be an anchor for them so that they don’t feel adrift.”
When people with dementia can’t cope, Dr Bute explains, “we revert to childhood patterns. I start to cry, because I cried as a child when I couldn’t cope. But other people will shout, or scream, or throw things. When they told me my behaviour in church was embarrassing, we worked out that I should sit with someone I knew, and sit near the wall, which gives me comfort for some reason.”
Routines are important, she adds. “If a service suddenly changes direction — for example, if the minister suddenly says, ‘Let’s all break into small groups’ — I can’t cope with that, because it’s unpredictable.”
Guests and helpers enjoy time at Chislehurst Dementia Café, established through the Anna Chaplaincy at Christ Church, Chislehurst
Dementia-friendly worship should not be too long or too wordy. Language is more difficult when you are living with dementia, Mrs Burton-Jones says. “Written words, spoken words can be elusive. Sometimes, you might design a service with people with dementia in mind; but, as much as anything, it’s about how we relate to them and accommodate their needs, and overcome their anxieties about saying and doing the wrong thing, and do our best to make them feel that we want them there.”
It is not just a matter of being dementia-friendly, Mrs Thorpe says. “It’s about being a properly inclusive church. It’s about what it means to be church.”
Dr Froggatt concurs: “In a sense, becoming dementia-friendly is about becoming everybody-friendly, because it’s saying: There’s a space here for you, whoever you are.”
That embrace needs also to be extended to carers. “Sometimes, family carers can be hard to reach because they want to be seen to be coping,” Mrs Burton-Jones says, “or they’re angry with how society, or even the Church, is neglecting them.” For many, the demand is relentless, with no respite.
“There’s a need to recognise the skills of those people who provide care,” Professor Higgs says, “particularly those who are not members of families, and are paid. They are treated as unskilled labour; but, in fact, they are having to deal with an incredibly complex set of needs. They are not seen as having rights themselves. If someone with dementia attacks them, they are just expected to ‘suck it up’.”
He notes a divide between how the Church regards people with milder dementia and those with the most profound level of cognitive impairment. Society at large sees the latter as “the abject”, he says. “They are to be pitied, but there’s nothing that can be done.” How should the Church respond to them?
“WE DO find it difficult when people move into challenging behaviour, when their inhibitions go, or fear manifests itself,” Dr Froggatt admits. “People get sequestered away because of that, and so we lose sight of them. We have to overcome our Britishness, almost, to be able to be a part of their lives and provide support.”
Diocese of LichfiedGeorge Rook, who writes the blog “Living with dementia as well as I can”, leading a session at the diocese of Lichfield conference “Better Together: Join the Conversation”, in 2019. The conference was led by people with lived experience of dementia
The diocese of Rochester, which started focusing on making churches dementia-friendly since 2014, has identified Anna Chaplaincy, a BRF ministry, as a means to provide better spiritual care for people with dementia, and now seeks to have a chaplain in every parish.
“A lot of very feisty, courageous older women are Anna Chaplains,” Mrs Burton-Jones says. “We’ve got some in their seventies and eighties who are doing the most remarkable work, sustaining those who are isolated and marginalised, and supporting carers as well.”
It is a highly skilled ministry, she says, and can be daunting, which is why it is often neglected. “I think it speaks hugely about the Church’s commitment to those on the edges of society. It’s a witness, to their families and their care staff, that the Church values those who appear to be in a state of utter dependency and frailty, and that we are going to be there for them to the end of their lives.”
The effort is not wasted. “Someone who can appear to be quite uncommunicative and scarcely present in the room may come to life when they hear the familiar words of hymns and prayers. It’s a profound experience to see somebody who has not spoken for weeks, or months, suddenly singing a hymn with great enthusiasm, word-perfect.
“The familiar liturgies, the prompts to familiar rituals, like communion — you can tell that they’re meaningful. There’s a deep spiritual connection that is beyond human comprehension.”
Those with dementia “might have a broken body, a broken brain, a broken personality, but they are still people”, Dr Bute says. “We never lose our spirituality.” She recalls seeing an old lady she knew being pushed around in a wheelchair by a carer from the advanced-dementia unit.
“I said: ‘Oh, how lovely to see you!’ Her face was blank, and the carer said: ‘You’re wasting your time. She doesn’t talk any more.’ I tried again, and the carer said: ‘She’s going to die soon.’
“I said: ‘Well, she loves the Lord; so she knows where she’s going.’ The carer said: ‘She can’t earn any Brownie points now; so I’m not so sure!’ And the lady in the wheelchair turned to her and said: ‘My sins are forgiven, because Jesus died for me.’”