Dementia Care

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22 Australian Journal of Dementia Care June/July 2016 Vol 5 No 3
demanded in the future. Institutional
living is no longer seen as a suitable way to
provide the last home a person will ever
reside in, at least not from the consumer’s
perspective.
It would seem reasonable to assume that
the architects, builders and interior
designers who build RACFs are working to
the financial and design specifications of
the owners who are funding the building.
RACFs were originally designed in a style
similar to hospitals, to support the medical
model of care. This meant they have
historically been built in an institutional
style and layout with rooms leading out to
long (often confusing) corridors, with
central eating areas, and not always with
gardens or access to the outdoors. This also
meant most of the bedrooms were also
share rooms, mostly twin share or four-bed
‘wards’ or rooms, as it was in hospitals.
This model is still verymuch the same as
the one being used inmost RACFs today in
aged and dementia care, and it does not
address the emotional, psychosocial, family
and relationship, or recreational needs of
most residents. It is based onmedical issues
such as medication requirements, falls risks
and nutritional needs, and thenmonitoring
things such as weight loss and falls, not on
quality of life from the perspective of those
people living there – the residents.
Caring for younger residents
Many years ago children were removed
from institutional accommodation because
it was realised they were more at risk of
poorer care and abuse, and yet our aged
and dementia care industry is breaking its
neck to buildmore institutional facilities,
many having little consideration for how
appropriate they are for the age of their
residents. In a focus group I ran in
Adelaide earlier this year one young son of
a person with dementia said: “My dad died
from dementia in an old persons’ home when he
was 42; …how can that even be legal that my
Dad had to live there in the first place?!”
This 17-year-old lad, whose father died
when he was 15, spoke out loudly about
knowing, intuitively, that he himself would
never have been placed into an adult
hospital ward when he was a child, and
about howwrong it is that young people
with dementia, or any other condition
where residential care is required, have no
choice but to be housed with people
sometimes more than 40 years older. With
almost 26,000 people inAustralia living
with younger onset dementia, this is
becoming increasingly important. The
design and décor of care homes for
younger people should be much different
to that of the older population, as would
the food, IT requirements, recreational
activities and so on.
Safety vs autonomy
Almost certainly RACFs are designed to
satisfy the expectations of owners, budgets,
profit margins, shareholders, bureaucracy,
governments, accreditation agencies and
the sons and daughters who usually make
the decision about placement into
residential care and want us to be kept safe.
They have little to do with the autonomy
we all want for ourselves. Autonomy,
which is simply the condition or quality of
being autonomous, of independence, is a
basic human right, as is risk taking, even
with dementia.
In my book, What the hell happened to my
brain?: living beyond dementia, I added this
quote from Keren Brown Wilson (Swaffer
2016 p331): “Safety is what we want for those
we love, and autonomy is what we want for
ourselves”. This is significant when we
think about the disparities between the
points of view of the person with
dementia and those of their daughters,
sons, families or support persons about
what a RACF should be like. I have no
doubt the safety factor influences both the
design of and the model of care provided
by RACFs far more than is necessary, or
indeed helpful, to the well-being and
quality of life of those living in them. The
young son I referred to earlier said he
would rather die than go through the
humiliation and loss of dignity he felt his
father endured when he had no choice
but to go into institutional-style aged
care.
Being dementia friendly
It may seem a little off topic in this article,
but I believe the design of RACFs also
needs to consider the global dementia-
friendly community campaigns. Being
dementia friendly means more than being
friendly. From the perspective of people
living with a diagnosis of dementia, it is
not about being friendly, or simple
awareness of what dementia is. It is about
howwe are treated and supported. It is so
much more than what the professionals
and interested others (without dementia)
who are working to make our community
‘dementia friendly’ think it is. It is about:
• respect
• human rights and disability rights,
including access to the Convention on
the Rights of Persons with Disabilities
(CRPD)
• non-discrimination
• full inclusion
• our right to citizenship autonomy
• equality
• equity
• access
• dementia enabling environments
• support for ‘disAbilities’.
This is very relevant to the design and
management of RACFs, including the
model of care being provided, as it is our
human right to feel included, to have
freedom, to have real support to live with
our disabilities, and for the provision of
dementia enabling environments, in the
same way as wheelchair ramps are
provided. Signage, lighting and design all
come into this as well. Dementia enabling
design is not necessarily costly or difficult
to provide, and I hope inAustralia we soon
legislate it to ensure RACF owners and
designers do the right thing.
Due to increasing cognitive and physical
disabilities caused by cognitive decline, a
suitably designed physical environment is
recognised as important in providing
optimum accommodation to ensure
comfort, assisting with wayfinding and to
promote independence. Unsurprisingly,
most people, regardless of comorbidities
including dementia, wish to continue to
live in their own home, in the community
and with the same access to social and
recreational support, as well as health
services that support them to continue to
do so.
Contact with family members and
friends is often crucial to the health and
well-being of continuing care residents,
and it is therefore in the best interests of the
designers of residential care facilities that
they build with this in mind. Access for
families and friends to visit, as well as to
engage in activities within the facility or
outside in the community, at times that suit
the residents and their family and friends,
not the routine of the home, is imperative.
Dementia enabling design
The design of residential care facilities
needs to be done using the dementia
enabling environment guidelines and
philosophies referred to earlier in this
article, so they promote not only a physical
environment that is enabling, but an
enabling social and recreational
environment as well. Frommy
observations and talking to others working
in this field I have heard that less than 50%
of new aged and dementia care builds in
Australia bother to do this, regardless of
the fact these guidelines are free
), and
far more importantly, significantly improve
the quality of life of the people who will be
living there. It is likely that we will have to
legislate in residential care in the same way
that people running commercial kitchens
eventually had to be legislated to convert
their kitchens to HazardAnalysis and
Critical Control Points (HACCP)
accreditation standards.
It is not necessarily more expensive to
design a dementia-specific area that is also
dementia enabling and the cost of the care