AN ELDERLY woman, suffering from dementia, paced the corridors
of the nursing home restlessly, repeating one word over and over
Members of staff were disconcerted, but no one seemed sure how
to put her mind at rest. They were at a loss to understand the
reason for her distress. The word she repeated was "God". That was
all she said.
One day, a nurse walked with her up and down the corridors,
until eventually, in a flash of inspiration, she asked: "Are you
afraid that you will forget God?" "Yes, yes," she replied
The nurse was then able to say to her: "You know that even if
you should forget God, he will not forget you. He has promised
For this woman, who was forgetting many things, and was aware of
it, that assurance was all she needed to hear. She immediately
became more peaceful, and that particular behaviour ceased. The
nurse's words gave her a new frame in which to see herself. When it
comes to forgetting, it is not who we are, but whose we are, that
Dementia is a complex and difficult human experience that raises
deep theological and practical questions. Research undertaken by
Alzheimer's Research UK suggests that people fear dementia more
than they fear cancer. Cancer causes concern; but dementia brings
with it the fear that the person somehow disappears, subsumed in
In a highly individualised culture such as our own, the idea of
"losing one's self" is devastating. But there is hope. If, as
Christians, we believe that nothing can separate us from the love
of God, there is a hope for people with dementia which - if noticed
and properly understood - can be liberating and hopeful.
IN HER powerful autobiographical account of her journey into
dementia, Christine Bryden asked: "Who will I be when I die?" A
high-flying Australian government official, she found her life
change completely when, at 46, she was diagnosed with pre-senile
dementia (Back-page interview, 17
In two books - Who Will I Be When I Die? (Jessica
Kingsley Publishers, 2012) and Dancing with Dementia
(Jessica Kingsley Publishers, 2005) - and a series of articles, she
relates the story of her journey, and her hope that, in the
resurrection, she will find a positive answer to her question. She
As I unfold before God, as this disease unwraps me, opens up the
treasures of what lies within my multi-fold personality, I can feel
safe as each layer is gently opened out. God's everlasting arms
will be beneath me, upholding me. . . I will trust in God, who will
hold me safe in his memory, until that glorious day of
resurrection, when each facet of my personality can be expressed to
Who she will be is determined by who God is: the one who
remembers her. But what does it actually mean? Often, we think that
what makes us who we are is what we remember ourselves to be. The
filmmaker Luis Buñuel neatly sums up this apparently commonsense
view: "You have to begin to lose your memory, if only in bits and
pieces, to realise that memory is what makes our lives. Life
without memory is no life at all."
Many of us might intuitively resonate with his sentiment.
"Surely," one might ask, "to forget one's life, one's family, one's
self, and, ultimately, one's God is truly to lose one's self." As
Psalm 88 puts it: "Can the darkness speak of your wonderful deeds?
Can anyone in the land of forgetfulness talk about your
righteousness?" For Bryden, the answer to the psalmist's question
is a resounding "Yes."
Is cognition the only measure of our presence among you as
spiritual beings? Certainly my capacity for accurate communication
of thought is diminishing daily. It is difficult to find the words
for the pictures in my head to communicate with you.
Does this mean my mind is absent? Even if these pictures may
themselves one day fade, is my soul connected with this failing
cognition? I do not believe this is so. I might have difficulty
feeling the presence of God, or being able to speak the words of a
prayer in my mind, but I can commune without words.
As my cognition fades, my spirituality can flourish as an
important source of identity. As I lose an identity in the world
around me, which is so anxious to define me by what I do and say,
rather than who I am, I can seek an identity by simply being me, a
person created in the image of God.
Bryden pleads with her readers to recognise that there is more
to being human than memory alone. The changes in her life may be
profound, but the key for her is to find new ways of encountering
God, when the old ways have faded and disappeared.
I believe that I am much more than just my brain structure and
function, which is declining daily. My creation in the divine image
is as a soul capable of love, sacrifice, and hope, not as a perfect
human being, in mind or body. I want you to relate to me in that
way, seeing me as God sees me.
She reminds us that loving God is not something that we do
simply with our minds. As the normal cognitive ways that she uses
to relate to God and others begin to fade, shift, and change, she
seeks different ways of connecting. She is learning to commune
One of the things that we often overlook, as we concentrate on
the loss of cognitive memory, is the fact that our bodies remember.
The memory of our bodies brings the past into the present.
As a chaplain, I often visited people with advanced dementia. As
I led them in worship, I was always moved by the changes I saw.
People who had been profoundly inactive, and apparently
disconnected, would suddenly begin to move their bodies in new and
surprising ways. They participated in the sacrament -singing and
praying, reciting the words of initiation, and signing the gestures
of redemption that comprise the sacraments of remembrance.
Over time, their bodies have learned, and remembered, the habits
and gestures of the gospel. Their bodies remember God, even if
their minds cannot put the same cognitive content to the words as
they once did.
This bodily memory draws the past into the present, and embodies
it in deep and meaningful gestures of worship and communion which
may not be named, but none the less remain poignant, loving, and
When a person with advanced dementia moves forward to receive a
holy kiss, or is embraced with the peace of Christ - practices of
communion, hospitality, and love that they have learned well over
time - they feel, and remember, Jesus. Their bodies remember Jesus,
even if their memories cannot now hold on to him.
Memory is etched into our bodies, but it is also firmly
em-bedded within our communities. Memory is something that we do
together. Lisa Genova's novel Still Alice is a story about
a 50-year-old woman's sudden descent into early- onset Alzheimer's
Alice Howland, a Harvard professor of mathematics, is happily
married, with three children. Everything appears to be going well,
and the future seems mapped out with clarity and excitement, until
she begins to notice her forgetfulness.
At first, it is small things: forgetting to pick up items from
the shop, and forgetting dates and appointments. But, gradually,
she begins to get more confused. And she is eventually diagnosed
with Alzheimer's disease.
Alice struggles to hold on to her sense of self, and to cope
with her fast-disappearing past. One thing that keeps her going in
the midst of her troubles is her BlackBerry. This is the place
where her appointments are kept, her cooking times are remembered,
and her life is organ-ised.
As the various alarms go off on her BlackBerry, she is able to
negotiate the ever-increasing confusion of her life. It becomes her
memory. There is a turning point in the book when Alice loses her
Blackberry. Eventually, it turns up in the fridge. The frozen
circuits on her telephone mark the end of its useful life as part
of her memory.
Alice's story draws our attention to the fact that memory is not
simply located in our brains. It is everywhere: in our communities,
in our family and friends, in our notebooks, in our computers. All
that we remember we remember together.
One of the problems for many people with dementia is not so much
that they forget - all of us have forgotten much more than we
remember, and forgetting is a central aspect of being human - as
that they themselves are forgotten.
When people enter the strange world of dementia, the first thing
that they notice is that many of their friends disappear. It is no
coincidence that loneliness, alienation, and rejection are often
primary marks of the lives of people with dementia. In a
hypercognitive culture such as our own, where things such as
memory, intellect, self-expression, and autonomy are highly prized,
to lose such things is to become undesirable.
It is easy to forget the forgetful. It seems that our
friendships are not built to withstand the storms of dementia. If
you have no one to hold your memories for you, you quickly find
yourself disappearing. If memory is what we do together, and if
people with dementia are forgotten, then the problem of memory
belongs to the community, not to the individual. Perhaps the
essence of faithful dementia care is to learn to remember one
All of this brings us back to Bryden's sustaining hope that,
even in the midst of dementia, she will be remembered by God. The
experi-ence of being forgotten felt by people with dementia
resonates closely with the experiences ex-pressed in the psalms of
lament. A big worry for the psalmist is being forgotten by God.
"How long, Lord? Will you forget me for ever? How long will you
hide your face from me?" Psalm 13 says.
For the Hebrews, to be remembered by God was to remain alive, to
continue to exist. To be forgotten by God was to have God withdraw
his spirit of life.
When God remembers something, it exists; when he forgets, it
ceases to exist. That is why the gift of forgiveness is so
beautiful, and potent. When God forgives our sins, they cease to
exist. The turning point for the psalmist is when he re-encounters
God's unending, faithful love. He is no longer forgotten. God
If we allow the experience of dementia to resonate with the
experience of the psalmist, we can begin to see the importance of
being remembered by God. When God remembers us, we are held in who
we are, now, and for eternity. "I will not forget you. See, I have
inscribed you on the palms of my hands," Isaiah says.
When we have forgotten who we are, when we remember badly and
lose sight of ourselves, we can rest assured that God continues to
Even in our deep confusion, as we echo Jesus's words "Who do you
say that I am?", in the memory of God we find an answer that roots
our souls. Perhaps one way of looking at the Church is that it is a
community that, in remembering that it is remembered, learns what
it means to remember one another well. There is hope.
The Revd Dr John Swinton is a former nurse, a minister in
the Church of Scotland, and Professor of Practical Theology and
Pastoral Care at the University of Aberdeen. His new book
Dementia: Living in the memories of God is published by SCM
Press at £25 (Church Times Bookshop special offer price £20
- Use code CT852 ); 978-0-334-04672-1.