ADI 2001 New Zealand -
Presentation by Christine Bryden - Slides 1 to 4
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Slide 1
My name is Christine Bryden, and I have fronto-temporal
dementia. I think I am the first person with dementia
(or PWiD) to give a plenary address at Alzheimer’s
Disease International and I am sure there will be many
others in the years to come. |
I
am a member of the Board of the Dementia Advocacy and Support
Network (or DASN) International, which is an organisation
for advocating and supporting people with dementia. We have
around 130 members, both PWiDs and TABs (or temporarily able-brained
persons who support us), around the world.
At this conference we are being well represented, including
running a booth, a workshop on co-dependency and discussion
sessions for PWiDs. This is a world first and I commend ADI
and the NZ organising committee for being open to our participation
and willing to take the risk of including us.
You have heard about dementia from a professional perspective,
about medication and about research. I’d like to introduce
a different perspective, that of the consumer, the client,
of these services - the person who is being diagnosed with
dementia.
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 Slide 1 |
Slide 2
We PWiDs, together with our families, are on a journey
from diagnosis to death. Dementia is now a major health problem,
not merely one of ageing and aged care, and is set to become
the major disabling disease in women in Australia over the
next five to ten years This perspective can affect the service
you might provide to us, for we will have needs maybe long
before we begin to exhibit what you might call challenging
behaviour.
Our journey begins with a struggle with daily life, of tiredness,
irritability, stress, a feeling that not all is well. There
may well be gaps in our memory but that is not always the
first sign we feel.
It’s more like a kaleidoscope of small problems, of not
quite being ourselves. We don’t do everything we used
to do, it all seems so much trouble. It’s what you on
the outside of our inside struggle might call apathy. But
it’s not lack of interest, but a lack of energy.
In stressful situations we cope very poorly, as we have so
few additional resources to muster under such a strain. Ordinary
life takes up all we have. Like I said in my book: “Who
will I be when I die?” “It feels like I am clinging
to a precipice with my fingernails. It takes all my effort
to stay where I am.”
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 Slide 2 |
Slide 3
The first step along our journey is one of laying ourselves
open to the medical profession, of a series of tests, of tension
and of apprehension. This is a traumatic time for us and our
families.
There is the insult of the MMSE, or if we are lucky full neuro-psychological
testing, when we find out that we cannot put a series of pictures
together, or blocks, or remember a shopping list. We feel
like failures.
We face a battery of impersonal medical reports, with one
line summaries saying “Generalised atrophy, No other
abnormality, Thank you for referring this patient” (from
my first CT scan). The brain scans can be very scary, lying
claustrophobically inside what feels like a torpedo tube,
outside which roadwork is going on, or a loud techno party
raging. One of the two.
During all these tests there is the agony of waiting, wondering,
and desperately hoping that it will be something that can
be treated and cured. But at the same time, we feel safe,
something is being done about the problems we have felt.
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 Slide 3 |
Slide 4
It may have been months or even years before we have got to
this moment of testing. Our GPs may fail to recognise the
signs of dementia, particularly in younger people, or dismiss
our difficulties as simply a case of “getting old”.
Both we and our families have struggled to get to this point,
but we wait in fearful apprehension.
Finally, after the tension of tests, there is the moment of
diagnosis. For many of us it is etched in our memories, like
the day President Kennedy died. The experience can be one
of extreme trauma, or of disbelief, or even relief (at last
there is acknowledgment of our difficulties). Often there
is a lack of information, of hope, and of compassion at this
critical moment for us.
The diagnosis is a turning point, at which we must face the
awful awareness of what lies ahead in terms of possible further
losses. We feel like waving a flag of distress, as our ship
of life sinks. We are experiencing a continuing threat to
self, and feelings of helplessness and powerlessness. Our
identity that we had prior to diagnosis is destroyed. All
these experiences are like those that lead to chronic trauma.
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 Slide 4 |
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