Home' Intouch : In Touch Summer 2016 Contents 12 IN TOUCH SUMMER 2016
NEW RESEARCH REVEALS ONE OF THE
BEST THINGS WE CAN DO TO HELP
PEOPLE LIVE WELL WITH DEMENTIA.
The discussion paper Living Well with
Dementia recommends a shift away
from the common belief that a diagnosis
means people are incapable of making
their own decisions, and focusing
instead on supporting them to do what
they enjoy for as long as possible. It was
released to coincide with the inaugural
Alzheimer’s Australia NSW Living Well
with Dementia Conference in Sydney
Alzheimer’s Australia NSW CEO The
Hon. John Watkins AM says the research
shows people with dementia don’t want
to be told what to do or not to do; rather,
they want to be supported to do what
they want to do for as long as they can.
“We know all too well how difficult
and devastating a diagnosis of
dementia can be,” John says. “But our
research shows that people can live
well with dementia by staying active
and being supported to maintain their
independence and do the things they
enjoy. There has to be broad societal
cultural change so that when someone
receives a diagnosis, they are not just
written off, ignored and forgotten.”
John says that in order to achieve this
cultural change, government investment
in creating a more dementia-friendly
nation is crucial.
In surveys conducted with people with
dementia, many respondents expressed
a desire for attitudinal change.
“I like to take part in new and exciting
things, but my wife thinks they’ll do me
more harm than good. I understand the
risk involved, but it’s what I want to do,”
says one of the respondents.
Another says: “If you get involved
in something you get pleasure and
enjoyment from, I guess that means
you’re experiencing joy to some extent.”
Similarly, carers highlighted a need
for change both in general community
attitudes and in the provision of care and
support services, with some expressing
concerns about the lack of purposeful
and engaging activities offered by
service providers and the community.
“The activities offered by the respite
service do not have a purpose. They are
just entertaining and try to fill in the day.
From my perspective, they seem more
like a babysitting service. People with
dementia can and should live a meaningful
life, but quite often don’t as there isn’t the
support and infrastructure for them in the
community,” one carer says.
The research looks at key concerns
and potential solutions to the challenges
faced by people with dementia and their
carers. It is hoped the findings will help
to reframe the conversation.
“As a society, we need to shift
our thinking regarding people with
dementia,” John says. “If we want to
truly provide the best support to people
with dementia, we cannot focus solely
on clinical care. We must place more
of an emphasis on the mental and
emotional needs of individuals.
“A diagnosis of dementia does not
define a person and does not mean they
do not know what they want and how
they wish to live their lives. People with
dementia can be capable of making their
own decisions and it is important they be
allowed to do so.”
A full copy of the discussion paper
can be found at: nsw.fightdementia.
People with dementia are twice as
likely to be lonely compared to the
rest of the population, according to
research from Alzheimer’s Australia.
The Loneliness and Dementia
Survey 2016, released in September,
sparked calls for more understanding
of the disease so people living with
dementia don’t feel isolated.
Alzheimer’s Australia NSW CEO
The Hon. John Watkins AM says the
results were, sadly, not a surprise.
“This research backs up what we
are told by our clients. When they
received a diagnosis of dementia,
friendships and some family
relationships fell away,” John says.
“We believe part of that is because
of the general lack of understanding
of dementia. People simply don’t
know how to interact with their
friend or loved one anymore.
“They are still the same person as
they were before the diagnosis. They
just might need a little bit more time,
understanding and support.”
More than 1500 people took part in
the survey. This included people with
a dementia diagnosis, their loved
ones, carers and some members of
the general public.
The survey also found that
people with dementia report fewer
relationships than carers, who in turn
have fewer relationships than the
People with dementia are twice
as likely not to see any friends
when compared with carers and the
general public; were three times as
likely not to have a confidant; and
were three times as likely not to have
a friend to call on for help.
“A diagnosis of dementia does not
define a person,” John says. “We
need to improve our understanding
of dementia and start to treat people
with the condition with the respect
and dignity they deserve.”
A copy of the survey can be
found at: www.fightdementia.
WHY DO PEOPLE
WITH DEMENTIA AND
CARERS FEEL LONELY?
28/11/2016 2:33 pm
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