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The Leveson Centre for the study of Ageing, Spirituality and Social Policy

House of Lords debate on
Alzheimer's Disease and Dementia

10 March 2004
Maiden Speech by the Bishop of Coventry

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My Lords, in addressing you for the first time I wish to express my thanks to the Members of this House and others who have made my experience thus far wholly enjoyable and relatively painless.

I wish to say something today about the pastoral care of those suffering from dementia and their capacity for spiritual awareness. My interest in this subject springs partly from the experience of trying to care for a mother-in-law who suffered from dementia for some 13 years. For much of that time my wife and I attempted to do this in our own home but, sadly, there came a time when this was simply no longer possible. For us, as for so many carers, the constant challenge was to remember that she was still a person and not simply a patient.

The churches in common with other faith communities have, of course, always been aware of this problem. In past ages physical illness often took is toll of people before advanced dementia set in. Now, however, with people living longer, it is not uncommon to find that those whom one loves are physically well, but suffering from a mental impairment which makes normal relationships difficult.

It is my underlying conviction that this subject of dementia needs a specifically religious or spiritual perspective and not simply one from medical science or social policy, invaluable though these are. In saying this, I would like to quote from the pioneering work of Professor John Swinton at Aberdeen University who has written and spoken so much on the area of spirituality and mental impairment. He points out that dementia is a frequently misunderstood form of mental health problem. I quote:-

"The particular way in which dementia has been constructed under the influence of the bio-medical model of health and illness has blinded us to some fundamental issues of personhood, spirituality and humanness. The crucial significance of dementia as a human experience, and indeed as a deeply spiritual experience ….. has been overlooked or down-played in the development of current understandings of dementia and accompanying modes of caring. Re-constructing dementia using a spiritual perspective based on the lived experience of dementia (spirituality being understood in its widest sense as the human quest for meaning, purpose, value and hope as well as that which is transcendent and captured within established religions), reconstructing dementia using a spiritual perspective offers new possibilities of understanding dementia. A concentration on the spiritual contributes to a process of holistic reframing of what dementia is as a biological, social and spiritual phenomenon, moving us towards a perspective which captures the fullness of sufferers as relational and spiritual persons with concomitant needs. Such an approach helps resurrect the personhood of dementia sufferers and reconnects people who are by definition in the process of being disconnected from self, others and God."

This person-centred approach is very much the one adopted by two organisations to which I would like to draw your Lordships' attention. The Christian Council on Ageing Dementia Group is perhaps best known for its award winning video "Is Anyone There?" This network first came together some 15 years ago out of a shared concern that people with dementia often were not regarded as persons with the same rights and spiritual needs as others. The Council's excellent practice guide offers practical advice to carers on how an understanding of spiritual needs may be integrated into existing care plans. It is keen to point to a holistic regime of care for dementia sufferers, a regime which addresses the whole person including the spiritual dimension. The Council works in close collaboration with other faith communities and with a growing number of dementia services development centres.

The second organisation to which I refer is located just across my diocesan boundary in Temple Balsall. The Katherine Leveson Foundation offers a focus for inter-disciplinary study on ageing, spirituality and social policy. It seeks to develop an understanding of spirituality as lived by older people including those suffering from dementia, and to support them in expressing spiritual awareness. It has recently launched a resource directory for those in churches who are working with older people. It runs lectures and seminars on subjects such as "Seeing the Person Behind the Dementia".

Let me end by quoting from a former Dean of Coventry. John Petty retired from our Cathedral 3 years ago and is now Chaplain to a Residential Home in Shrewsbury. He describes two worshippers who came recently to one of his services, "Nancy is Welsh. When I put the hymn book into her hands she simply says, 'That's heavy'. Nancy sang in her church choir and knows much of the Prayer Book. Jean is her great companion. Jean once worked for the British Council in Lisbon. They are inseparable. As you push one wheelchair alongside the other, both faces light up but if you ask them the name of their friend they couldn't tell you. A constructed sentence is beyond them and yet the Lord's Prayer, the Nunc Dimittis and the Book of Common Prayer responses flow out."

My Lords, I suggest that it is probably not possible for us whose minds are still relatively unimpaired to evaluate the experiences of those who are able to recognise the familiar words of hymns or prayers, when the face of a favourite daughter goes unrecognised. What is clear surely is that if we are to continue to value such people as children of God we must also continue to treat them as those who are made in God's image. And whatever else that term may mean, it implies a capacity for relationship with God which exceeds the purely rational.

My Lords I have spoken about spirituality and pastoral care. This is not because I am unaware that this House is here to discuss issues of policy and the well being of the nation. I have spoken this way because I believe that spirituality offers us a way of seeing the individuals who are the focus of this debate in a holistic and relational way. I suggest that talking of the spiritual needs of those with dementia, and, indeed, of their carers, offers a new perspective on this issue. My Lords I do not underestimate the difficulties that this subject raises, theological difficulties as well as medical. I do not imagine a world in which worship and pastoral care are easy. Nevertheless, it is at this point that I feel Christians and other faith communities may have much to offer.

+Colin Coventry

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