House of Lords debate on
Alzheimer's Disease and Dementia
10 March 2004
Maiden Speech by the Bishop of Coventry
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resources from the Leveson Centre
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
