None of us is beyond the reach of the love of God. We have to learn from, as well as offer help to, people affected by dementia. We need to pray, and work, for greater understanding of their needs, improvement in care, and progress in research.
Churches Together in Cumbria appointed me as dementia co-ordinator. It has also enabled me to recruit an ecumenical team of 12 volunteers, drawn from six denominations, who work with me as the dementia reference group. I’ve been greatly helped by the support I have received, and from key leaders in the county such as the Bishop of Carlisle, the chair of the Methodist District, and the area president of the URC.
Cumbria is a particularly ecumenical place. The three largest denominations here are working together under the slogan “God for all”. I’ve yet to find a copy of the posters with that strapline on which says: “unless you’ve got dementia”.
We seek to make every church in Cumbria dementia-friendly by 2020. We are now recruiting “dementia enablers” (DEs) across the county. DEs are volunteers at local level who play a part in making the church dementia-friendly in terms of welcome, worship, and environment. Sixty-five DEs have been recruited to date, and, in partnership with the charity Livability, we ran a two-day workshop for them that was well received.
One of my aims through my network of DEs in Cumbria is to ensure that the good practice in one place is made known elsewhere. In the UK, 850,000 people have dementia, and this is set to rise to more than a million in the next ten years — and to more than two million by the middle of the century. The current cost to the country is £26.3 billion each year, which could pay the energy bill for every household in the country for a year. There’s an estimated 44 million people in the world with dementia, and the annual rate of increase equates to one new case every four seconds. The global cost is estimated to reach one trillion dollars by 2018.
My late mother was diagnosed with vascular dementia in 2002, and sadly died in 2009. I’ve a strong personal interest in raising awareness of this condition.
One can learn from people in the earlier stages of dementia, as they seek to come to terms and affirm their continuing faith in ways that can be heart-warming and inspiring.
But also, in the latter stages, there can still be significant insights. I recall, a year or so ago, helping at a communion service at a care home, and, as we were taking the wafer dipped in wine round, my colleague said the words of administration to a lady who had dementia. This lady opened her eyes and said: “Thank you.” That was a moment of illumination for me — that even in advanced dementia, there are no no-go areas for the love of God.
God doesn’t give up on any of us. Even in the most desperate of conditions, the love of God can be experienced, and we glimpse it, in the awareness of someone with dementia. And who are we to say that this is not happening at other times?
I’d draw a very sharp distinction between laughing at people with dementia — there’s nothing to laugh at in the condition — but there are occasions when someone with dementia can find something amusing, and one can laugh with them. My aunt had Alzheimer’s, and spent her last years in a care home. One morning, the manager of the care home bent over my aunt over-solicitously with a “How are you, my dear?” His tie was dangling in her face, so she grabbed it and started polishing her glasses with it, keeping him quite at her mercy. It’s an illustration of the persistence of personality: there was enjoyment and humour, and she was living life to the full for that moment.
A key word is attitude. I’d want each church to acknowledge the fact that members of the congregation who have had the diagnosis of dementia are to be treated as full members for as long as possible, for as much as possible. Others should listen to what they have to say, listen to their needs, review what the church does, ask if there are changes they could possibly make to their services that would make it easier for these members to participate, and/or run some special services which would be in tune with their needs and wishes. And are there any changes needed to the physical environment — improved lighting, signage, toilets, health-and-safety issues?
I think a church also has responsibilities to the wider community. There may be people with dementia, or their carers, who are looking for places where they are welcome. A church can say yes, we will make you welcome — perhaps running a special activity like a dementia café. Churches should also be alert to their responsibilities to the carers.
Many churches are already doing this, and Rochester diocese is running a similar project. We’re not seeking so much to alert people to something they’re not doing, but to encourage them, and acknowledge and disseminate good practice.
We must acknowledge people’s fear. People seem now to be more worried about getting dementia than cancer, perhaps because there’s been so much progress in cancer research; and we need more research in dementia. I think we are on the verge of some significant breakthroughs, and I encourage churches to pray for progress in dementia research. The only advice I’d want to give is that, if people are worried about their memory, or any other symptom, they should go to the doctor and seek an appointment with a memory clinic, because an early diagnosis does give one time to prepare with one’s family for what may come, and to fulfil plans, as well as sorting out power of attorney, and making decisions about end-of-life care.
One of the issues is that there are no certain predictors for dementia, other than the important fact that what might precipitate a stroke may also bring on vascular dementia, such as an unhealthy diet, or smoking, or drinking to excess.
I spent nearly all my career in university administration and management. I moved into fund-raising towards the end, and have remained involved in this since retirement. I suppose these gave me a recognition of the need to get on with all sorts and conditions of people, an ability to write minutes, and to know how to ask people for money — all relevant for a Reader and a churchwarden.
I’m currently a trustee of and honorary director of fund-raising for the Prayer Book Society. I value it, not because it is old, but because it is good. And, of course, for many people with dementia, it’s the traditional words of the BCP which are secure in their long-term memory, and facilitate their continuing worship.
Once, I was leading the intercessions in a care home, and offered some biddings in contemporary language. Then we moved into the Lord’s Prayer in its traditional form. A man in the front row who had been sitting with his eyes closed suddenly was there. We were speaking to something lodged securely in his long-term memory.
I grew up in a Christian household in west London as the eldest of four children, with three younger sisters. I can’t remember a time when I was unaware of God. My father was a college principal, and my mother ruled supreme on the domestic front. I’ve lived in the north since 1967: first in Cheshire, and then, since 2002, in Cumbria. My wife and I have two daughters and five grandchildren.
I reckon that, in essence, my faith has remained the same, but my understanding has obviously developed and changed over time. Nothing can quite equal the blazing, Beach Mission-certainty of childhood.
I’d describe myself as a rather traditional Reader, in that the focus of my work is on preaching. I particularly enjoy preaching at the eight o’clock BCP communion. Operating within a limit of 400 words is a good challenge for any preacher.
The theme music for Newsnight is probably the sound I feel most reassured by.
My wife, Susan, who has put up with me for 49 years to date — one year to go to the gold medal — is the greatest influence in my life.
The books I turn to most are the Bible, especially the Psalms, the Gospel of Luke, and Ephesians; and the novels of Jane Austen, especially Persuasion and Emma; The Wind in the Willows; and the stories of P. G. Wodehouse.
When England lost to Iceland — that’s what last made me angry. I’m happiest when I’m on holiday in Cornwall.
For myself, I pray for a sense of perspective. For others, for whatever they may ask me to pray.
I’m an equal-opportunities man, and I will select two people I’d choose to be locked in a church with, one female, one male: Jane Austen, so that I may say thank you; and St Luke, so that I may ask him to fill in some of the gaps in his writing, such as answering the question about when Joseph died.
David Richardson was talking to Terence Handley MacMath. He may be contacted at email@example.com.