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A FAMILY AFFAIR
WHEN JULIA'S MUM WAS DIAGNOSED WITH DEMENTIA, HER
WORLD CHANGED. NOW, SHE WANTS EVERYONE TO HAVE AN
HONEST CONVERSATION ABOUT LIFE WITH THIS DISEASE.
I'm a dementia daughter. My mother
was diagnosed with Posterior Cortical
Atrophy (PCA) in 2013, aged 63. It's
an unusual form of dementia, often
described as a 'visual variant' of
Alzheimer's because it affects the
visual and spatial skills sooner than
Mum's diagnosis has changed
our family profoundly -- our centre
of gravity has shifted. Dementia
is the subtext for everything we
do: daily outings, holiday plans,
work routines, living arrangements,
trips to the supermarket. Almost
every conversation with my father
and siblings includes an update
on how mum has been today, her
latest symptoms or the next step
in managing her care.
It has both strained
and strengthened our
around for the frst
year or more -- mum's
doctors had given her
symptoms a label but
hadn't really provided
any other information
or service referrals.
I spent whole days
researching the words
that her neurologist had
written on a sticky-note.
Gradually, we formed a
picture of what to expect and found some
services available in western NSW.
Mum has handled her diagnosis
magnificently, and we're lucky that
now, three years later, her personality
and memory are still largely intact.
We are also lucky that life in a small
town helps mum maintain some
independence because someone will
always help her cross the road or find
the right change in her wallet.
I miss lots of things that mum and
I always did together: embroidery,
gardening, furniture restoration,
shopping trips. We still share our
reading via audiobooks. She still gives
me great advice and we still laugh a lot.
I'm grateful that I live close by, can give
practical help and that we spend lots
of time together. But I do live in fear of
the day she doesn't know who I am.
Until I was part of a family touched
by a dementia diagnosis, I had no idea
how little I knew about this collection
of diseases. Like
most people, I only
thought about it in
terms of Alzheimer's
disease and memory
loss. I hadn't thought
of it as a terminal
illness. Also, I didn't
realise how many
people I already knew
had been touched by
it, and I didn't know
it was the second
leading cause of
death in Australia.
I remain baffled by
people's failure to
speak out about this disease. Those
who live with dementia should
shout to be heard for as long as they
possibly can. Families and carers
should answer honestly when asked
how they or their loved one are
faring. Friends should feel able to
ask -- frankly, but politely -- and then
listen to the answer. We can't kill the
monster under the bed if we won't
admit it's there.
QWhy did you become a
I became a Dementia Advocate
to give back to Alzheimer's
Australia for the help we continue
to receive. I can help raise
awareness and advocate for the
support needed by people living
with dementia. My husband,
Rudi, was diagnosed with
Alzheimer's disease in 2013. We
knew little about this disease,
but the knowledge and skills
we acquired through services
provided by this wonderful
organisation were inestimable.
We no longer felt alone.
QWhat one thing do carers
need to hear?
They need words of
understanding and support.
These can only come through
educating family, friends and the
community to remove the stigma
and fear of how to communicate
with people with dementia.
Acceptance and continuing social
contact is vital for people living
with dementia and their carers.
QWhat would you say to
someone who wants to
be a Dementia Advocate?
I would say, "Don't hesitate."
There are so many different ways
within the Advocates program
that you can make a contribution
to raise awareness of dementia
as a chronic illness.
Dementia Advocates give a voice to people living with dementia and their carers. If you
would like to be a Dementia Advocate, contact Jo-Ann Brown or visit the Alzheimer's
Australia website. T: (02) 8875 4636 | E: email@example.com
"I REMAIN BAFFLED
FAILURE TO SPEAK OUT
ABOUT THIS DISEASE.
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