ADI 2001 New Zealand -
Presentation by Christine Bryden - Slides 5 to 8
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Slide 5
Not only must we cope with this internal turmoil, but now
we have become a labelled person. We are yet another case
of Alzheimer’s or dementia. Our inner fear at loss of
self, of identity, is exacerbated by this outer stripping
away of who we once were.
It feels like a big stop sign has just been placed on our
life’s path, and we cannot see beyond to any new future,
only a journey further into dementia. This journey seems full
of more stop signs - of stopping work, stopping driving, stopping
golf, stopping looking after grandchildren.
Our brand new label of dementia is like the yellow star of
the Jew of the ghetto - we have the stigma of “being
demented”. We are watched carefully for odd behaviour,
we are not able to be trusted, we are thought to lack insight,
our input is not taken seriously, and we are expected to start
wandering, getting lost and exhibiting challenging behaviour.
Rachel Renman says that “diagnosis is simply another
form of judgement”. It is a critical step on our journey,
to a future of stop signs which we and our family face together
with fear and uncertainty.
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 Slide 5 |
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Slide 6
Diagnosis
has changed our world forever. Our lives become limited
by the stigma we face in the world around us. It’s
like we have a target painted on our foreheads shouting
out “dementing” for all the world to see. People
become awkward in our presence, are unsure of our behaviour,
and our world becomes circumscribed by the stigma of our
illness.
We want to retreat in shame, and do not want to “come
out” and tell people the diagnosis. It’s not surprising
that some of us react by denying anything is wrong, and
our families do too. Better to pretend at normalcy than
to face up to the challenge of dementia.
If we do believe the lie of dementia, that we can’t
learn new things, remember reliably, or find our way around,
we are blindfolded to our own potential. We withdraw into
helplessness and let our families take over.
Our inner world is in turmoil as we suffer anticipatory
grief at loss of self. We may become overwhelmed by feelings
of anxiety, anger, sadness, fatigue, shock, helplessness
and numbness as we try to come to terms with losing ourselves
as well as others.
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 Slide 6 |
Slide 7
But is that devastating diagnosis right? So often we are given
the label Alzheimer’s, but what about fronto-temporal
dementia, vascular dementia, Lewy Body dementia? Still devastating,
but you may need to offer other types of treatment. The current
prevalence of Alzheimer's may be incorrect, because autopsy
checks show 40%-60% of cases were another type of dementia.
FTD probably accounts for 20% of cases of degenerative dementia.
It is inherited in around 40% of cases - far higher than in
Alzheimer’s. It took three years for my original diagnosis
of Alzheimer’s to be revised to FTD and only now must
I deal with this issue.
Anti-dementia drug research is on groups of people with Alzheimer’s,
because that is what many of us are told we have at first.
The drugs are trialled and have good effect - but how many
people in that research cohort actually had some other form
of dementia? Tragically the drugs may be denied to people
with other forms of dementia, because the results supposedly
only apply to Alzheimer’s. This may only be around 50-60%
of cases of dementia, of those in the research group. What
about the rest of us, who could also benefit?
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 Slide 7 |
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Slide 8
Like the poet John Keats, expressing a fear of death, we
can say of diagnosis that this is a time “When I have
fears that I may cease to be”. If we are labelled,
we are susceptible to fear. Like Viktor Frankl, help us
“to bear witness to the uniquely human potential …
which is to transform a personal tragedy into a triumph,
to turn one’s predicament into a human achievement.”
What do you tell us at this critical time of diagnosis?
“It’s best not to let her know.” “He
doesn’t really understand.” “Go home and
enjoy the rest of your life.” The assumption is that
nothing can be done, so why bother? But we want to get our
life in order, to think about family relationships, our
legal and financial affairs. Give us information about dementia.
Don’t assume we lack insight, for we might simply be
in denial - a perfectly normal response to the shock of
diagnosis. What about counselling and support groups? This
could help us work through our grief over losing our self,
and our family and friends, during the course of the disease.
Symptoms of dementia may be exacerbated by the grief reaction,
as we experience anxiety, anger, sadness, fatigue, shock,
helplessness and numbness.
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 Slide 8 |
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