Dementia Care

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Vol 5 No 3 June/July 2016 Australian Journal of Dementia Care 21
It is clear that the number of Australians
in the over 65 age demographic is rising,
and as the population continues to age,
more and more older Australians and
people with dementia will require some
sort of care, whether it’s a care partner,
community care, respite or a residential
aged care facility (RACF).
With this in mind, I write about the
design of RACFs, and what people with
dementia want, as opposed to what those
who often are responsible for placing a
person with dementia into a RACF might
want. In running a number of focus groups
and interviews with people with dementia
over the past 18 months, it is clear the goals
are disparate, and engaging with us, even
at the design stage of RACFs, will be
useful, particularly in the climate of
increasing Consumer Directed Care.
Market-driven model
The Australian Government announced
significant reforms to home care in the
2015-16 Budget, and the aged care
reforms are now well under way. Early
changes, for example, will mean that a
home care package will follow the
consumer and we will also be able to
change providers. In addition, all
applicable charges will be published on
the government’s My Aged Care website
. This will
translate into the residential care sector as
well, and with greater choice and more
transparency, consumers will be more
inclined to make demands previously not
seen before in this sector.
It moves us to a market-driven service
model and one that is starting to have
significant impact on providers across
Australia, hence the increasing call for me
to run focus groups with consumers with
dementia. Providers will need strategies to
remain competitive in the residential care
market, and will need to improve their
business management and leadership,
improve staff-to-client ratios and increase
levels of dementia education, and
importantly, improve the design of their
facilities.
What consumers want
From the seven focus groups for over 80
people with dementia and online
interviews with hundreds of other
individuals with dementia and care
partners that I have conducted in the past
18 months, this is what consumers have
said they want in residential care:
• Re-ablement.
• Exercise, lifestyle and diet – all important
to quality of life and well-being.
• Supports and strategies for disabilities to
enable independence.
• Lots of space – inside and outside.
•Own keys or access to an outside area,
even if the front door is locked.
• Recreational areas for walking, birds,
natural environments.
• Creative environment.
•Meals when they want them, and food
that is more edible than what they have
seen or heard about in many RACFs.
• Flexible routines.
•Absence of apparent barriers/walls.
•Ascreen for audiovisual content (for
communal get-togethers).
•Open access to the outside world (even if
chaperoned).
•Outside community coming in.
• Family able to stay overnight (privacy).
• Personalised furnishings (everybody
wants their own style).
• Lesbian, gay, bisexual, transgender and
intersex (LGBTI) friends to stay.
• Resident autonomy and power – ideas
and suggestions are taken seriously, can
influence services (eg, howmany settings
for dinner), getting people involved in
the process.
•Use of technology.
•Access to walking groups, dancing
classes, normal exercise, gyms, social
recreational sport (eg, fishing, bowls etc
in the community).
•Onsite rehabilitation and gymnasium –
with sports physiologists or
physiotherapists to assist.
Human rights
Listening to consumers may be the best
place to start when it comes to improving
the design of care homes, and it is not just
about choice. It is fast becoming about
human rights for people with dementia;
the first submission on human rights by
people with dementia was made recently
to the United Nations Committee on the
Rights of Persons With Disabilities
) via Dementia
Alliance International (DAI)
. DAI has also just
released its first official publication, The
human rights of people living with dementia:
from rhetoric to reality, available on its
website, as a guide to educate and support
the activities of individuals and
organisations in this area.
When looking for residential care for
ourselves or someone we support, there
are four key questions we are often told to
ask and that are considered specific to the
needs of the person moving into care:
• Is the RACF providing culturally
appropriate care and services, including
culturally appropriate food?
• Are the person’s relatives and friends
encouraged to be involved?
•What non-medication therapies are used
in the RACF? What forms of restraint are
used, including chemical and physical?
How do staff engage residents
throughout the day?
• How do they support residents and
families through the end-of-life care
process, and do they engage with or
bring in specialist community palliative
care teams?
One very important point missing in
this list of considerations is whether the
facility has been built or renovated using
the Dementia Enabling Environment
Principles* (Fleming 2011), as this is
becoming a human rights issue for
residents in aged and dementia care. Easy
access to the outside, not feeling locked in,
the ability to engage in everyday lifestyle
activities like helping with the washing or
cooking, and today, smaller home-style
accommodation is becoming not only
desirable but is now being provided by a
few organisations in the sector and will be
What people with dementia want
from residential care homes
Kate Swaffer explains what people with dementia want from residential care, based on her own
experience living with younger onset dementia, as a past care partner advocating for and supporting
three people with dementia in residential care, and from feedback she’s gathered during focus groups
and interviews with people with dementia around Australia