Dementia Care

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Vol 5 No 3 June/July 2016 Australian Journal of Dementia Care 5
N E W S
People with dementia under
the age of 65 are missing out on
essential services and support
as they continue to fall into the
gap between the disability and
aged care sectors, according to
new research released by
Alzheimer’s Australia NSW. It
has found that despite
significant policy reform,
including the introduction of
the National Disability
Insurance Scheme (NDIS),
both sectors continue to see
the other as being better able
to respond to people with
younger onset dementia,
meaning those clients face
difficulties in accessing
appropriate services.
The research, contained in
the discussion paper Younger
onset dementia: still slipping
through the cracks, recommends
continuing the Young Onset
Dementia Key Worker
Program by rolling it into
the NDIS and educating
NDIS support planners in
younger onset dementia.
The paper, including all
recommendations, is available
at .
Younger people ‘slipping through the cracks’
Sarah’s Year In One Day
After mother-of-three Sarah
Gorfine was diagnosed with
Alzheimer’s disease four years
ago, at the age of 34, she decided
to use her personal experience
to change the public perception
of dementia. She wanted to raise
awareness that it is not just an
older person’s disease.
Sarah is now in the late stages
of the disease and being cared
for at home by her husband
Mick Roberts and family. To
fulfil Sarah’s wishes, Mick has
established a Facebook page
and theme for raising awareness
of younger onset dementia,
which he’s called Sarah’s Year In
One Day
sarahsyearinoneday/).
With assistance from family,
friends and Baptcare, Mick
organised a public awareness
day – also called Sarah’s Year
In One Day – in their home
town of Geelong, Victoria, on
April 17. Hundreds of people
attended the family fun day
event, which featured activities
associated with days
important to Sarah, such as
Australia Day, Easter and
Mother’s Day.
Mick said there was a real
sense of the community
working towards a common
goal, with support for the event
coming from the local RSL,
Lions and Rotary clubs, Country
Women’sAssociation,
Alzheimer’sAustralia Victoria
andmany other private
companies and individuals.
“It was great to see such
amazing support for Sarah’s
dream to raise more awareness
of this disease,” he said.
Baptcare Diversional
Therapist Jennifer Puxley is
part of Sarah’s home care
package team and helped put
the plan into action to support
Sarah, Mick and their family.
She said the event was about
not only raising awareness, but
also creating an environment
in which individuals living
with dementia can be happy
“in the moment”. Although no
longer able to verbally
communicate, Sarah still
conveys her opinions through
expressions and actions.
Jennifer said the theme of
Sarah’s Year In One Day was to
symbolise that “living with a
degenerative disease is about
quality not quantity. It is about
creating the opportunity to
celebrate life and what is
important”.
Sarah Gorfine (second right),
her husband Mick Roberts and
children dressed in purple,
Sarah’s favourite colour, to raise
awareness of younger onset
dementia at the Geelong event Universities worldwide have
typically responded to the
growing challenges posed
by the increasing number of
people with dementia through
the education of health and
social care graduates or through
health andmedical research.
However, there is no doubt that
the attention given to dementia-
related subjects at the
undergraduate level does not
match the scale of the issue.
Findings from a review of the
academic and grey literature
demonstrate that the majority of
dementia education and training
programs occur at the
professional level within
hospital settings, with content
typically focused on bio-
medically based information
and targeted at direct care staff
and nurses (Cappetta &
Phillipson 2016).
Several universities
internationally, particularly
within the UK, have extended
this focus and implemented the
idea of a ‘dementia-friendly
university’ in an effort to better
address dementia awareness
and skills. These initiatives tend
to focus on encouraging staff
and students to become
‘dementia friends’ (Plymouth
University, University of
Huddersfield, and the
University of Salford) and to
make changes to the physical
environment so campuses are
more accessible and enabling to
people with dementia (the
University of Salford and the
University of theWest of
Scotland). InAustralia, specific
courses focused on health
professionals and promoted by
universities or supported by
government programs (like
Australia’s Dementia Training
Study Centres (DTSCs), have
gained some prominence and
there have beenmajor
developments with online
programs such as the University
of Tasmania’s Understanding
DementiaMassive Open Online
Course (MOOC), and the
DTSCs’ Dementia Education
Online.
Creating opportunities
Now, in anAustralian first, the
NSW/ACT DTSC has been
funded by the Department of
Health to explore a ‘whole of
university’ approach through
the Dementia Enabling
University Strategy (DEUS).
This pilot project at the
University of Wollongong
(UOW) involves working with
interested academics from a
diverse range of disciplines to
create more opportunities for
students to acquire the
knowledge and inspiration they
need to develop better ways to
enable people with dementia to
lead full lives.
DEUS aims to promote
opportunities for UOWstudents
across the faculties to gain a
perspective on how their
discipline might address the
growing challenge of dementia;
and to acquire the skills and
capacity to create environments,
technologies, philosophies,
pedagogies, curricula, research
and career pathways that will
address the interests of people
with dementia. The project is
also placing the unique
perspective and involvement of
people with dementia at the
centre of the strategy to ensure a
truly consumer-based approach.
Professor Richard Fleming,
Director of the NSW/ACT
DTSC, explains: “There is
DTSCs aim to create
Australia’s first ‘dementia
enabling’ university
Richard Fleming, Lyn Phillipson, Kate Swaffer and
Kara Cappetta report on an ambitious pilot project to
develop Australia’s first ‘dementia enabling university’, at the
University of Wollongong, NSW, where the aim is to inspire
and equip students from a range of disciplines to address
the growing challenge of dementia