Dementia Care

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Vol 5 No 3 June/July 2016 Australian Journal of Dementia Care 23
provided will be cheaper if it is done this
way. For example, if residents feel like it is
their home, if they feel like they have
freedom and autonomy, then the likelihood
of behavioural and psychological
symptoms of dementia (BPSD), and
therefore the use of costly medication or
additional staff or support services, will be
reduced. There is still too much of ‘we have
done it like this before’, and not enough of
looking to the best interests of the clients’
welfare. Facilities that look like they are
from the pages of a glossy home design
magazine do not necessarily provide
optimal care; this is based on how a person
feels when they are living there, and poor
care, under-trained staff and poor design
may be key contributors to the currently
documented incidence of BPSD being
experienced by up to 90% of people with
dementia in residential care. If we improve
these things, I believe this figure may well
go down to only 10%.
Creating a home
Whilst the notion of ‘keeping us safe’ is
important, the feeling of being locked in,
locked away, forgotten, ignored and living
in an institution is more often the reality for
residents with dementia. No doubt the
view of the family care partners versus the
person with dementia is vastly different.
We want autonomy. They want us to be
safe. We want freedom and a front door
key. They want the doors locked. They
(and the paid staff) are taught to see our
walking as wandering that needs to be
‘managed’; we just want to walk. They see
locking us up as keeping us safe and
knowing where we are. We see and feel like
this is being locked in jail.
By the time we probably do need care we
don’t knowwe need it andwe don’t want
to be in care, so it is no wonder we get
angry or upset. We want to continue to live
in our own home, the place we have always
lived. We are sold the concept of this being
our newhome, also known as a residential
care facility, but then again, we are not
given the key to the front door of our new
home. How can it be our newhome if we
don’t have our own keys and can’t get out?
On top of this, we are expected to live
communally with strangers and eat in
dining rooms with people we have never
met, andmay not ever get to like.
Including the views of peoplewho live in
these facilities in their designmay be the best
way to ensure they are placeswewill want
to live in. In a focus group I ran in Sydney in
2015, onewomanwith dementia said, when
askedwhat was important to her: “My home
is my world so I need staff that I know and who
knowme – who knowmy idiosyncrasies; to have
consistency and routine is extremely important –
without these I become confused and disoriented
andmy anxiety goes through the roof, and [I need
to know] that those who support me will
encourage my independence, followmy needs,
assist where I need assistance, allowme to do
what I can do onmy own; maximise my control
inmy own environment”.
People with dementia living in care
facilities are told it is good for them to go to
the activities room and participate in the
various (or most often not so varied)
activities provided, at the times on the
printed timetable stuck on the door in our
single roomwith our single bed. (Yes, a
single bed, although if it was really our
home, we would be in a queen, king or at
least a double bed.) Oh, and this room,
supposedly our personal, individualised
private space, cannot be locked, nor do we
have a key for it, and people rarely knock
to enter, they just come in when it suits
them. We might be resting, or wanting to
be alone, but no, when it is time to eat, or to
be bathed, or go to an activity, we are
disturbed, often without the courtesy of the
visitor in ‘our home’ asking if it suits us. In
the same way that someone would request
to enter our home if we were living in the
community, if we end up needing to live in
a RACF, everyone, including the staff,
owners, our family and friends, should
come into our small private space only as
our invited guest.
Kate Legge wrote a piece in The
Australian (March 10-11, 2014) called How
do you shrink a big life into a small suitcase?
Around the same time I had an article
published in this journal called Human
rights in residential aged care: a consumer’s
perspective (Australian Journal of Dementia
Care 3(1) February/March 2014). The two
articles looked at aged care, mine telling
tales of woe, hers telling of the good
experience she had with her father. Sadly,
the positive stories are few and far
between. It is almost impossible to pack a
lifetime into a small suitcase, therefore it is
imperative we design RACFs that are
more like our homes. From personal
experience I know how difficult it was for
three of my family members to leave their
homes and independence, to live in a
RACF in a small roomwith a single bed,
with a lot of strangers. In reality, no-one
wants this, and it is clear from the media
and in research that people say they want
to die at home.
If I must go into a RACF I will expect
that it has been designed using the
principles and philosophy of dementia
enabling environments, and that not only
will it look reasonably comfortable and
inviting, it will smell like home, not urine,
it will enable my independence and, most
importantly, even if it has fences it will not
make me feel locked in jail. Whilst the front
door may be locked (as it is in my own
home now), I will expect access to outside
areas, gardens and recreational facilities.
Getting it right
There are a few organisations inAustralia
who are using these principles, but the one
that comes to my mind first is Group
HomesAustralia. They have small,
personalised dementia enabling homes in
the community that look and feel ‘just like
home’, with access to the garden, activities
in the community and with better staff
ratios and training than institutional-style
aged care facilities.
This style of residential accommodation
and care is optimal and we need to see it
rolled out to all areas; in particular I
advocate strongly for government to
support the Group HomesAustralia model
of residential accommodation to enable it
to be rolled out to all socio-economic areas.
Conclusion
Many things come down to perception. If I
could not get outside through any of the
doors, I would immediately feel trapped,
as if locked in jail. If I had no access to a
kitchen or garden, and was stopped from
my daily walking, I would feel upset and
undoubtedly become anxious, distressed
and eventually angry if this infringement
of my right to live my own life persisted.
Frommy conversations with consumers
it seems imperative that their views are
included in the design of residential care
homes, and their needs are considered
more important than the needs of either
family or site owners. After all, they (we)
are the ones who will be living there.
* The Dementia Enabling Environment
Principles are based on the work of Professor
Richard Fleming and Kirsty Bennett, at the
University of Wollongong. These 10 principles
have an evidence base and were developed to
guide the design of residential facilities for people
with dementia.
References
Fleming R (2011) An environmental audit tool
suitable for use in homelike facilities for people
with dementia. Australasian Journal on Ageing
30(3) 108-112.
Swaffer K (2016) What the hell happened to my
brain?: living beyond dementia. London: Jessica
Kingsley Publishers.
Kate Swaffer is CEO, Chair
and Co-founder of Dementia
Alliance International, Chair
of the Alzheimer’s Australia
Dementia Advisory Committee, a
member of the World Dementia Council,
a board member of Alzheimer’s Disease
International, an author, speaker and
advocate for people with dementia.
Contact Kate via