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THIS COUPLE KNEW THEY WOULDN’T LET A
DIAGNOSIS OF YOUNGER ONSET ALZHEIMER’S
DISEASE DICTATE THEIR LIVES.
Everyone has a different story to tell, and
it’s so important that people share their
stories with others. This is why I decided
to become a Dementia Advocate.
This September, David and I will have
been married for 49 years. We raised
three much-loved daughters who have
also blessed us with 10 grandchildren.
I’ve gone over and over in my mind
countless times trying to think of
when David first showed symptoms of
Alzheimer’s. Some changes were big,
such as a change in his personality and
behaviour. This naturally worried us both,
as David had always been a very gentle,
caring and loving person. But others were
smaller, such as his signature changing, or
occasionally taking much smaller steps,
almost like a shuffle.
I spoke to our GP and, after a series of
tests, David was diagnosed with younger
onset Alzheimer’s disease. We were
shocked, not realising how much our lives
Getting an early diagnosis is so
important because you know where
you’re going and there is so much help out
there. We were given people to contact
for support, including Alzheimer’s Australia
NSW and local community contacts.
David having Alzheimer’s has not
changed anything drastically. There are
many new responsibilities and challenges
I face every day, and naturally for David
as well. I often look at David, when he’s
sitting seemingly deep in thought, and
wonder what must be going on in his
The most important thing is, we still
have each other. We decided one day that
we need to make the most of every day
and get on with our lives. Our aim is to
try and make each day like nothing has
changed. That’s very challenging, but it
helps us both.
I’ve become much stronger with all the
new challenges and responsibilities of
our life. It really upsets David if he gets
annoyed or angry, so I try to stay strong
and calm, but we are all human and tears
happen. I’ll do whatever I can to help
David and keep praying and dreaming that
someday there will be a cure for all those
affected by this horrible disease.
I feel so sad that there is so much
stigma around dementia and Alzheimer’s.
People need to know that having this
disease does not mean a person is
‘demented’ in any way, or cannot go on
Communication – between couples,
loved ones and families – is the key to
living well and accepting what’s happening
around you. In the beginning, I was so
in the dark about this disease, and it’s
not until you start talking to others that
you realise properly what it’s all about.
Spreading the word to others is vital.
IS WE STILL HAVE EACH
OTHER. WE NEED TO
MAKE THE MOST OF
EVERY DAY AND GET
ON WITH OUR LIVES.
QWhy did you become a
I was a young carer for my
dad before he moved into
an aged-care facility. My dad
was diagnosed with younger
onset Alzheimer’s five years
ago when he was 54. I want
to share my experience to help
raise community awareness of
the disease, reduce the stigma
associated with dementia in
our society, and reach out to
young carers to help them better
understand the dementia journey.
QWhat is one thing that all
carers need to hear?
Take care of yourself. Being
a young carer is a rewarding
experience, but it can prove to
be difficult at times. Make sure
you take some time out to talk
to someone about how you’re
feeling and do things that make
you happy. Also, know you are
not alone. There are so many
accessible support services
for carers that have helped my
family and me along our journey.
QWhat would you say to
someone who wants to
be a Dementia Advocate?
I would say ‘your voice matters’.
It is important to have people
who know about dementia
firsthand speak up about their
journey and experience.
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: firstname.lastname@example.org |
28/11/2016 2:40 pm
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