AS A Christian and a mental-health professional, I have
sometimes felt as if I am living in two opposing cultures. But
recently, in acquiring a better understanding of dementia through
my work, I have also gained a new insight into my faith.
Dementia seems to have become the new taboo. As with cancer in
the past century, it has such a stigma that one dares not speak its
name. The assumption is that once dementia has been diagnosed, the
progression of the disease will entail a relentless stripping away
of reason, intellect, personality, and relationships.
In my early work in memory clinics and the local community
mental-health team, I used to encounter both patients and carers
who were terrified of what was over the horizon. Nobody could tell
them what dementia would really be like; so they assumed that it
must be too awful to think about, like Milton's "brink of Hell" in
Paradise Lost. If nobody could advise "what best may ease
the present misery, and render Hell more tolerable. . .", the best
that they could hope for was early oblivion.
As part of my job in the memory service, I used to run support
groups for people in the early stages of dementia, teaching
strategies designed to improve their memory. Such strategies proved
of limited value, however, given the increasing inability of group
members to retain new factual information; their memories did not
improve, and their feelings of incompetence and frustration became
I also ran a support group for carers, and it was there that I
first heard of the book Contented Dementia [Vermilion, 2009], by
the psychologist Oliver James, about the SPECAL (pronounced
"speckle") method of managing dementia developed by Penelope
Garner. On reading it, I began to see dementia in a new light.
Oliver recounted Mrs Garner's experiences as she cared for her
mother, who had dementia. For Mrs Garner's mother, Dorothy Johnson,
her memory loss was not much of an issue when she was with her
daughter, but it became a huge problem in the presence of her
husband, with his constant attempts to "put her right".
IT IS well known that, even for those of us with normal memory
function, stress can interfere with our ability to remember things.
This is what was happening to Mrs Johnson. Her daughter was able to
provide a virtually stress-free existence, which maximised her
abilities, whereas her husband, with the best intentions possible,
constantly reminded her of her failings, and thereby exacerbated
her memory problems.
Mrs Johnson remained unusually articulate, even as her dementia
progressed. Mrs Garner began to understand that her mother was
having to use old information from pre-dementia days to make sense
of her current surroundings, because more recent facts were simply
not available to her. This was putting her out of step with others
around her, unless they understood.
It is not the disease process itself that destroys the ability
of the person to cope; all too often, the real harm is done by
well-meaning care that takes no account of the experience of the
person with dementia. We repeatedly attempt to reorientate people
with dementia into our reality; to insist that we know best, and
what they believe is wrong, and fail to see how that must erode
People with a lifetime's information and expertise can feel
slighted when their remarks are considered at best irrelevant, and
at worst, repetitive nonsense. Too often, people with dementia do
not feel valued by their nearest and dearest, who, in the daily
struggle to keep them fed and watered, and clean and safe, keep
reminding them how dependent and out of step they are.
AFTER reading the book, I decided to attend a training course on
the SPECAL method run by Mrs Garner at the Contented Dementia
Trust, and there I began to get a better understanding of my
patients than I had ever had before.
Mrs Garner uses the analogy of a photograph album to represent
our memory system. As we go through life, each experience is stored
as if it is a "photograph" in our "album". Each photograph contains
both the facts of what has just happened, and the associated
feelings. We constantly refer to the most recent photographs to
help us to make sense of our current situation.
As we age, everything we have experienced continues to be stored
in our album in the normal way, but we become slower at finding the
photographs that we need. Sometimes, we become so slow that by the
time we find what we are looking for, its moment of usefulness has
passed. This is normal ageing.
When dementia begins, however, a new type of photograph begins
to appear in the person's album, providing them with the feelings
of what has just happened but without the associated facts. This
type of photograph is called a "blank", and, over time, more and
more blanks are stored.
PEOPLE with dementia have to search increasingly further back in
their album to find normal photographs, in order to make sense of
what is happening in their life on today's page. This is often
difficult for those around them to understand, and carers may
assume, wrongly, that the person is going insane.
With the understanding of the SPECAL photograph-album analogy,
some of the things that my patients had tried to explain started to
make sense, and I began to see how I could work with their
dementia, instead of trying to fight against it. This was a
revelation to me; and constant repetition of their old memories and
favourite sayings - things that I had merely put up with in the
past - now became a useful resource.
As I became more observant, the minutiae of conversations and
gestures revealed fascinating insights into their lives. I
discovered that most people have something in their past that has
been a source of pleasure and fulfilment, and that by referring to
that, I could engender feelings of well-being and achievement in
place of failure and dread. And, since new facts were rarely being
stored, those positive experiences could be recycled endlessly
without the person becoming bored.
Children discover that playing their favourite game or singing
their favourite song over and over soon becomes boring and
repetitive. Not so for the person with advancing dementia, who is
not storing the factual repetition; for them, it is the feelings
that are being stored. Feelings become more important than facts,
so that once they enjoy something in the present, they can do so
again and again without risk of boredom.
THIS insight has helped me to understand, for the first time,
John Newton's hymn "Amazing grace" when it talks about heaven thus:
"When we've been there ten thousand years, Bright shining as the
sun, We've no less days to sing thy praise Than when we first
I first heard this hymn as a child, and I always thought that,
even if we could choose our favourites, surely all that hymn
singing would get just a bit tedious after the first 9999 years or
so. But now I am beginning to understand. Just as dementia makes
joyfulness repeatable, I believe that heaven will also be full of
experiences that feel new and exciting, and time will mean
In a surprising way, working with dementia has helped me to see
that there will be no sense of boredom in heaven; and that the
glorious feeling of having just arrived in that wonderful place,
and set eyes on our Lord and Saviour, will never fade.
Shirley Pearce is an independent occupational therapist
specialising in dementia