Home' Intouch : In Touch Spring 2016 Contents SPRING 2016 IN TOUCH 9
IT'S TIME TO END THE
PROFESSOR HENRY BRODATY AO AND PROFESSOR
PERMINDER SACHDEV AM, CO-DIRECTORS,
CENTRE FOR HEALTHY BRAIN AGEING (CHEBA)
Dementia is not contagious. Dementia is not
dangerous. Yet all too often, people with dementia and
their families feel isolated after the diagnosis. Friends
stop visiting. Acquaintances are awkward in their
conversations. Families are uncertain how best to help.
Many people keep their diagnosis a secret for fear
of being shunned or excluded from normal activities.
In some cultures, dementia carries a special stigma,
and families worry that their children might be
disadvantaged if word spreads that one of their parents
has Alzheimer's disease or a similar condition.
The situation with cancer 40 to 50 years ago was
similar. Now, we know that support can help and that
dementia is a word, not a sentence. A diagnosis does
not preclude positive living, loving relations and joyful
experiences. People with dementia can talk to others
with similar conditions through their local Alzheimer's
Australia NSW offce or online through the Dementia
Families can join Alzheimer's Australia NSW, attend
local meetings and enrol in Living with Dementia
educational programs (see page 16 for details). Our
research has shown that family carers who have more
support from friends and families are less likely to feel
burdened or depressed.
Knowledge really is power. People with dementia
can understand what is happening to them and what
to expect. Family carers can learn better ways to assist
their loved ones, effective techniques of preventing or
dealing with agitation or other behaviours, and how to
I have found it useful to encourage extended
families to meet and work out strategies as to how
they can best help the person with dementia and the
primary care partner. Too often the responsibility falls
on just one person -- usually the spouse. Too often,
the spouse 'protects' their children who are 'too
busy' and never ask.
Reach out. Seek support. If your family or friends are
uncomfortable, guide them.
Find out more about CHeBA at www.cheba.unsw.
edu.au. Professor Brodaty is an Honorary Medical
Advisor to Alzheimer’s Australia NSW.
BETTER LIFE PROGRAM
After Jane's husband, Harry, was diagnosed with
dementia, Jane took part in the Better Life program run
by Alzheimer's Australia NSW.
The program is suited to carers and people in the
early stages of dementia who might fnd it diffcult
to attend group support and education programs. A
personal coach works with participants to help build
confdence to manage the impacts of dementia and
achieve wellbeing goals at their own pace. The program
is designed to be fexible, accessible and individualised
and can be delivered over the phone or via video chat.
"Harry and I live in the beautiful Southern Highlands,
NSW. Harry was diagnosed with mild-moderate
Younger Onset Alzheimer's disease in October 2014.
He was 64 and I was 51. The changes in Harry's
behaviour, the loss of family and friends, income and
future plans was devastating. I felt angry, hopeless and
very isolated," Jane says.
"Societal attitudes and support align with older people
living with Alzheimer’s disease and it was diffcult to fnd
specifc help and information for people with Younger Onset
and their carers, as many of us are working full time and/or
have younger families and older parents whom we care for.
"I became involved in the Better Life program
because I was desperate and needed support to
navigate an avalanche of information and to juggle
Harry's needs with work and family commitments.
"The program has been incredibly helpful and [my
personal coach] Heather has supported me through
many challenges including communication changes
and feelings of isolation. I’ve found it very diffcult to
talk about my experiences with family and friends,
as they all work and have their own families. Heather
also encouraged me to use other services such as
counselling, and to understand the signifcant role a
younger onset key worker can play in our lives.
"There's no cure for Younger Onset Alzheimer's
disease but when all hope seemed lost, at least now I
feel we can fnd a way forward.”
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