There are currently 850,000 people in the UK living with dementia, and the number is likely to rise to more than two million by 2050. There is no cure. Current treatments alleviate symptoms temporarily, at best. It is likely that all of us know someone who is adjusting to memory loss or indeed living with significant dementia.
Until the early 1990s the future for people with dementia was bleak and people with dementia were often not well looked after. This is changing. Human ingenuity, skill and a commitment to supporting voluntary organisations, like the Alzheimer’s Society, have developed an approach to dementia which puts the person at the centre of our focus.
For Christians, all people, whatever the shape of their lives, are made in the image and likeness of God. The Church must treat people as individuals and approach them with the knowledge of who they are: not who they were. The person with dementia should not be seen as deceived, disempowered, childish or perhaps worst of all, someone to ignore.
The resources below explore some issues – and some opportunities – for churches and Christians thinking about dementia and working with people who live with it. Below those is a reflection from our Principal, Canon Professor James Woodward, on dementia and the degree to which our attitudes to it are congruent with other illnesses. (See his article below the resources list on this page.)
Using Technologies for Safer Walking: A Participative Inquiry
Led by Ruth Bartlett and Tula Brannelly. The residential research retreat was supported by the Alzheimer’s Society, Caroline Holland of the Open University, PhD student volunteers Emily Oliver, Sara Yahgmour and Kellyn Weir, facilitator Cathy Garner and Dementia Adventure. Special thanks to the eleven people with dementia and nine family carers who contributed and to the Laverstock Memory Support Group.
We deal with our fears about illness in a variety of ways.
Consider how we responded to HIV in the late 20th century. We find it hard to engage with those who are different. We fear contagion. It has also taken a long time for us to face the cruel reality of cancer, and to discover a humane way of engaging with the whole person and their pain. We do not like to think of ourselves as vulnerable. Now another challenge faces us. They call it the long goodbye. If each of us were ever in the situation of being able to choose the shape of our diminishments, a physical one might be easier to bear than a mental one. Dementia strikes fear in people’s hearts, and with good reason. If we human beings are to flourish then we must address our fears and indeed learn to embrace all of the limitations that come with being human. This includes part of what may happen to our memory as we get older.
Diagnosing dementia is often difficult, but the steady progression of memory loss can be devastating for all those involved in care. There are currently 700,000 people in the UK living with dementia, and the number is likely to rise to more than one million by 2025. About 60,000 deaths a year are attributable to dementia. The financial cost to the UK is more than £17 billion a year. There is no cure. Current treatments alleviate symptoms temporarily, at best. Caring for someone with dementia is stressful, physically and emotionally draining, and very expensive.
This reinforces surveys that suggest that those living with dementia suffer stigma. A report from the Alzheimer’s Society says that some people see neighbours crossing the street to avoid them. The fear that surrounds dementia is bound up with our inability to engage with ageing in ourselves and others. The Church reflects this ageism and little priority is given to older people and their needs. What is needed is investment in awareness campaigns. Government, charities, Churches, and employers need to work together to offer support and information.
There are many innovations in this area of care that challenge us to develop better practice. None of us should be content with a status quo in which a reductionist medical model of care has the potential to overlook the person suffering from the condition. People living with dementia need to have their condition reconstructed. If we can redefine the problems of time, memory, and history for them, then new solutions can emerge. If, as I suspect, there is a connection and not a discontinuity between the worlds of dementia and those without… then we have been culpable in the past of a hideous sin; that of denying humanity to those who, in their vulnerability, are perhaps most human. This illustrates the central challenge of this book: to understand and affirm that people with dementia may be seen primarily as people — people “unconditionally held within the love of God”, people who retain their personhood until death, though it may be difficult to access.
Before Dame Cicely Saunders died, she wrote to me about my work in caring for the elderly, challenging me to see it as pioneering, as hers was in hospice care in the 1960s and onwards.
I hope the Church will play its part, and share in the challenges and opportunities of those who live in the complex land between remembering and forgetting. Older people are the Churches natural spiritual constituency; in facing the challenges of dementia we are offered the pastoral opportunity to embrace this experience in all its complexity. Understanding these needs and aspirations can help the Church become inclusive, intelligent, and wise.
Principal of Sarum College and Coordinator of the Centre for Human Flourishing