Chapter 4
Meeting the needs of Behavioural and Psychological Symptoms of Dementia in
residential care
4.1
Managing the behavioural and psychological symptoms of dementia (BPSD) in
residential care is a significant aspect of providing care for people with
dementia. As noted in chapter 2, most people with a diagnosis of dementia will
experience BPSD at some point. Demonstrating the need for suitable BPSD care, Alzheimer's
Australia estimated that between 10% and 15% of aged care beds are required to
meet the needs of residents demonstrating moderate to severe BPSD.[1]
While there are a small number of people with dementia for 'whom no amount of
care and management will reduce the incidence or severity of their BPSD', for
almost everyone with dementia, their BPSD can be minimised through appropriate
care.[2]
4.2
The committee heard that in residential care, behaviours are often not
seen as an expression of need, but rather as a symptom of dementia, just as a
cough might be a symptom of a cold. The behaviour is seen as something that
must be clinically managed rather than investigated for the underlying cause:
This is commonly overlooked in the aged care industry and
behaviour is often seen purely as a symptom of dementia and so no action is
taken to improve the situation and improve the quality of life for both the
person and their carers.[3]
4.3
This chapter discusses the provision and quality of residential aged
care for people with dementia in Australia. It considers issues including
continuity of care, the provision of dementia friendly facilities and
care, staffing and funding. The use of restraints in residential care was one
of the key issues raised in this inquiry and is discussed in chapter 6.
Accreditation standards
4.4
The physical environment can have a significant impact on the likelihood
of a person experiencing BPSD.[4]
One of the challenges of providing care for people with dementia in the
residential care system is that the current system was designed to manage
physical deterioration associated with the ageing process. It was pointed out
that Australia's residential care system is based on a model that was designed
more than half a century before 'when the decision was to put old people in an
institution based on either a prison or a medical model'.[5]
4.5
To ensure that residential aged care facilities (RACFs) are of an
acceptable quality, successive governments have developed accreditation
standards. The current status of these standards was outlined by the Department
of Health and Ageing (Department):
In terms of aged-care regulation, all facilities which
receive a Commonwealth subsidy have to be accredited. They are accredited
against four accreditation standards, which I think have 44 outcomes. Some of
those outcomes are very relevant in this area. They include behaviour
management, medication management and the staffing that the facility has to
have. Facilities are required to have the appropriate number of appropriately
qualified staff to meet the care needs of residents and the provider is
required to assess, on an individual basis, the care needs of the resident and
put in place strategies to manage those care needs.[6]
4.6
The New South Wales Nurses and Midwives' Association (NSWNMA) queried
the efficacy of the current accreditation standards, noting that 'while there
are many checks and balances in place under existing accreditation arrangements,
many aspects seem to slip through the net or are sacrificed for the sake of
budgets'.[7]
4.7
Rural Northwest Health argued that standards are insufficient for people
with dementia:
There is no specific accreditation outcome included for
people living with dementia and how their physical and mental health can be
demonstrated to be at that optimum level. These outcomes do not send a clear
message to providers that people living with dementia should have demonstrated
systems and processes in place to meet and improve people's optimum health and
personal care needs.[8]
4.8
Perhaps reflecting the concerns expressed above, a family member of a
dementia patient in residential care argued that the area most in need of
improvement is supporting 'the sufferer's emotional needs, and their right to
quality of life'.[9]
4.9
It appears that in many ways, the Australian aged care system still
struggles to support people whose needs are primarily psychological in nature. Some
stakeholders criticised these standards as continuing to emphasise clinical
outcomes, rather than quality of life measures. The care and facilities
provided by the market are in many ways a response to the standards set by
regulators. One service provider candidly explained:
Accreditation standards across the board for every aged-care
facility could certainly be changed to reflect outcomes that need to be
achieved if you are going to try and change the industry. If you want people to
change their behaviour, then maybe it requires a stick approach and you have to
measure what they are delivering. But outcome standards for accreditation are
very focused on clinical—17 out of 44. You are asking us to focus on the task
and the clinical outcomes. If you look at lifestyle, there are three out of 44
that would perhaps address that area. So what are we telling the industry? What
is important? If we want to change, we have to start measuring and informing
the industry how we want it to go.[10]
4.10
There also appears to be a lag in the aged care sector accepting its
role in the provision of dementia and mental health services. Although RACFs
were developed long ago to care for the aged in their final years, they now
must learn to cater for the mental decline that increasingly affects their
residents. More than half of permanent residents in RACFs have a recorded diagnosis
of dementia. A further quarter has a diagnosed mental illness other than
dementia.[11]
Although the evidence suggests mental illnesses are a key competency needed by
RACFs, the committee was informed:
Despite this, few residential aged care facilities consider
BPSD or mental illness as part of their 'core business'. This is reflected in
staff training, care practices and environmental design or residential aged
care facilities. Environments are often not designed to cater for people with
cognitive impairment, as this is not a mandatory requirement under the relevant
building regulations.[12]
Funding
4.11
To meet these standards, service providers rely on a base level of
government funding. For providers with dementia patients demonstrating BPSD,
there is now also a supplement available. Most funding for aged care comes from
the Commonwealth, although philanthropic organisations and not-for-profit
organisations also play a significant role. The Department elaborated on the
mechanisms of residential funding:
In residential care, what we have is the aged care funding
instrument [(ACFI)]. That instrument allows needs to be assessed in three
different domains: activities of daily living, complex health care and also
behaviour. So there is already the capacity for a resident who has got high
behaviour needs to get funding up to a certain level. It was always
acknowledged that there was this relatively small number of people with very
extreme behaviours who were not being adequately funded through the ACFI so
there is now this separate dementia and severe behaviour supplement, which will
allow the provider to claim an extra $16.15 a day for eligible clients who have
been assessed against the [Neuropsychiatric Inventory] tool and who have an
appropriate diagnosis of a condition that is listed.[13]
4.12
Over the years, aged care funding has undergone significant changes to
improve the industry and the quality of care. However, it was reported that
although buildings had improved, quality of life appeared to be a secondary
consideration and aged care still operated on an institutional model.[14]
4.13
One recent change has been the introduction of the Dementia Supplement
to help facilities meet the costs of providing care for people with dementia.
It was proposed by Alzheimer's Australia that the receipt of the supplement
should be linked to a facility meeting certain standards of dementia specific
care:
We think the [D]epartment should show some interest in the
profile of the residential care provider in terms of their capacity to deliver
dementia care to those who have severe behavioural difficulties. We would want
to see, for example, organisations with a commitment to no physical restraint.
We would like to see organisations who have a coordinator who is there to
advise on behavioural issues. We would like to see them have environmental
audits to show that their facilities are in fact sensitive to the needs of
people with dementia. I will not go through the list, but we think there are
ways of defining capacity so that people are protected from residential
providers who really do not have the capacity to care for people with severe
BPSD.[15]
4.14
Although the new behaviour supplement introduced under the Living Longer, Living
Better reforms is now available, it is unclear how much of an impact this
will have on service provision:
Whilst BlueCare understands that dementia supplements are now
being implemented within home care packages and residential placements...it is in
its infancy and the impact of this new supplement has yet to be analysed as to
the outcomes for the residential client.[16]
4.15
HammondCare argued that the supplement would only work if providers take
on sufficient numbers of people with BPSD to garner sufficient supplements to
improve care services:
Whilst the Commonwealth introduction of behaviour supplements
for residential aged care is a step in the right direction, at $16-a-day the
impact of that will not be seen unless there are providers that are prepared to
start looking after more people who are displaying severe BPSD. That will mean
there can be some economies with receiving a level of subsidy that does
actually improve the care and services that are provided.[17]
4.16
The committee heard calls to review the ACFI tool 'to enable
"behaviours" to be more easily claimed for and allow for more
realistic staffing levels'.[18]
It should be noted that the receipt of ACFI funds does not come with any
staffing ratio requirements.[19]
BlueCare provided an example highlighting the potential frustrations of dealing
with the ACFI:
Another factor that is often overlooked when claiming for
behaviours is that 'all behavioural symptoms must disrupt others to the extent
of requiring staff assistance'. The current ACFI does not provide funding for
the intervention required to manage or prevent the assessed behaviour.
For example, a resident who yells, shouts, and swears at the television in
their own room with the door closed is not a claimable behaviour unless it can
be proven that other residents can hear and are disrupted by this behaviour. However
staff need to intervene and settle the person which can take considerable time
if they are using a person centred approach which is best practice.[20]
4.17
It was put to the committee that the ACFI is unduly focused on clinical
outcomes and provides funding in anticipation of completing those tasks. There
is no requirement for ACFI funding to be used to improve the quality of life of
residents.[21]
4.18
The Brotherhood of St Laurence said that many of the innovative programs
they undertake rely on non-government funding sources—such as bequests or donations—to
operate.[22]
Improvements often come through innovation, which carries some level of risk.
The many non-government organisations that are exploring new ways of providing
care and sharing what they learn do not accrue any fiscal benefit for their
research. BlueCare submitted that governments need to do more to support the
innovation work that the non-government sector has been spearheading.[23]
4.19
A natural concern for governments and citizens of any new—or even different—system
is the cost of change. The committee heard that providing better care for
people with dementia through environs that better meet their needs and
increased staff training will not necessarily be more significantly expensive,
as currently there is a lot of money wasted doing things poorly.[24]
Leaders in dementia-appropriate facilities and care
4.20
Evidence received by the committee indicated that there is a cultural
change underway which will bring about better care for people with dementia,[25]
but that this change needs to be encouraged and nurtured:
The culture of aged care is changing, but it will take a long
time because it is a very entrenched culture. It has moved from the medical
model to be a little bit more personal and a little bit custodial. It probably
needs to continue to move, and I think that needs to happen through government
support.[26]
4.21
The committee heard about a number of promising models being developed
to improve dementia care in RACFs that combine the features of effective
dementia support: appropriate facilities; well-trained staff; supportive
leadership; and person‑centred care (PCC).
4.22
One of the outstanding facilities that the committee had the privilege
to visit was the Yarriambiack Lodge in Warracknabeal in rural Victoria. A
family member of a former resident of that facility summarised what it was that
made life in Yarriambiack Lodge good for people with dementia:
In summary, the important aspects that make Yarriambiack
Lodge better for dementia patients are, one, making the residents feel useful,
two, encouraging them to spend their days in a group, as they would in a
family, three, enabling them to participate in domestic activities and hobbies,
rather than passively watching, and, four, having caring, constant and loving
staff.[27]
4.23
It was explained to the committee that Yarriambiack Lodge operates using
the Montessori method for dementia:
The focus of the Montessori method for dementia is on the
abilities, needs, interests and strengths of people living with dementia. These
methods focus on creating worthwhile roles, routines and activities for the
person, while also supporting the person's environment.
...
With Montessori, it is about the staff letting go of control.
The staff job is to enable, not to do. Everything we do for the residents we
take away from them. Our motto is: use it or lose it. Staff that do the least
for the residents get a prize. Staff who do nothing get the grand prize.[28]
4.24
The committee also heard of the promising 'Greenhouse' model being
introduced into residential care in Australia:
[Small] household environments are developed, allowing people
living there to take part in the running of the home and live together as a
community. The model embraces people living with dementia as an opportunity for
continued growth and development. It creates an environment where individual
needs are met because each person is known and valued. Everyday tasks are seen
as an opportunity to support autonomy, decision making and meaningful
engagement.[29]
4.25
This model is similar to that described by a former employee of the Alzheimer's
Disease and Related Disorders Society (ADARDS) home in Tasmania:
This little home was AWESOME, quiet, slow paced and very
respectful of the needs/wants of the residents...We were always able to enter the
kitchen and get residents any requirement, fluid or nutrition wise and could
sit with them at breakfast time enjoying a cup of tea/coffee and eating a piece
of toast or bowl or cereal; this encouraged the demented residents to eat as
they would mimic what you were doing. Those that were able read the newspaper
and we would discuss the news. This was all after a calm morning routine of
walking, showering and dressing at the resident's pace. We often engaged in
walks around the garden, picking flowers, feeding the chooks or birds or just
walking with each other in silence whatever the resident wanted to do to keep
their happiness at a maximum level. This was THEIR home and we were to respect
this fact above all else![30]
4.26
ADARDS, opened in 1991, was a pioneering and internationally recognised
dementia-friendly RACF, which demonstrated that difficult problems in dementia
care can be handled in comfortable surroundings, provided special design
features are observed, and well-chosen, skilled, and caring staff are employed.[31]
4.27
The facility was designed by Dr John Tooth OAM, the then Tasmanian State
psychogeriatrician, and two experienced psychogeriatric nurses.[32]
As explained by Dr Tooth:
We needed to have residents in small houses with furnishings
and décor resembling homes of 50 years ago. There were four houses of nine
single bedrooms, each with en-suite facilities...Each house had a kitchen, dining
room, living room and tub bathroom. The design was simple but the furnishings
of each of the four houses resembled those of a previous era.[33]
4.28
The former ADARDS home received international acclaim for both its
design and the management of people with dementia while significantly reducing
reliance on medication.[34]
In 2007, Dr Tooth was an Australian of the Year State Finalist in recognition
of his pioneering approach to dementia care.
4.29
Although there are models that appear to be best placed to deal with
people with dementia, all aged care providers must be appropriately resourced
and staffed to provide care to people with dementia. The existence of
specialised facilities does not remove the responsibility from others to
provide care for people with dementia.[35]
Some of mechanisms to improve dementia care across all RACFs are discussed
below.
Size and layout
4.30
The size, layout and design of RACFs are important factors in the
quality of life enjoyed by the residents of that facility. Just as a noisy and
confusing setting can exacerbate BPSD, a calming, clear and appropriate
environment can prevent and manage it. One of the key considerations in
dementia facilities is their size.
4.31
Representatives from Rural Northwest Health highlighted the differences
that now exist between disability and aged care in relation to the provision of
residential care:
Today, if I went to a government department responsible for
people with a disability I would be told that the maximum number of people that
I should have living in a house with a disability is seven and that the members
must be engaged within the community. If I went to the government department
responsible for funding older people living with a physical or cognitive
disability I would be told that the minimum number of people I should have
living together would be 90.[36]
4.32
HammondCare highlighted the importance of smaller facilities that have
lower levels of noise and are easier to navigate as a means of reducing the
incidents of BPSD:
It is really hard to provide the right level of care to a
person who has those needs in a 100-bed facility, which is confusing and large
and noisy. Noise is to people with dementia what stairs are to someone in a
wheelchair. That is what can exacerbate a person's behaviour within that
environment.[37]
4.33
The above example also illustrates the degree to which many facilities
are inappropriate for sufferers of dementia.
4.34
The committee received evidence that dementia is best managed in smaller
home-like facilities. HammondCare contended that:
I think the ideal number [of residents] is between six and
10. Any more than 10 and I think it is not manageable. In order to make that
economically viable within the current funding structure, one of the big
challenges is providing care for that number of people.[38]
4.35
The committee heard that units with up to 16 beds are manageable, but
beyond that it is necessary to have a separate unit to provide best-practice
dementia care.[39]
4.36
According to the evidence, current funding arrangements make it very
difficult to provide residential care homes that mimic the home-like
environment considered ideal for dementia patients. BlueCare noted that '[s]taffing
smaller environments has an impact on economies of scale and is often cost
prohibitive within a business model of care'.[40]
The committee heard that facilities need to have around 90 beds in size in
order to be financially viable.[41]
4.37
Smaller self-contained units within a larger facility were one suggested
means of providing high quality care while remaining economically viable.[42]
Brightwater Care Group described two such facilities that it operates:
-
The Village which comprises 65 private rooms in six connected
houses that caters for people living with dementia who are independently mobile
and need high care support; and
- Edgewater which comprises 33 private rooms in four co-located
houses.[43]
4.38
The committee did hear of at least one facility with between 50 and 60 residents
that was able to provide dementia friendly care by creating 'a wonderful sense
of it being someone's home' while remaining viable.[44]
4.39
As well as the size of a facility, the look, layout and fittings of a
facility can have a large impact on the people with dementia living there. The
committee was informed that properly designed facilities can also reduce
'unnecessary' BPSD. Dementia-friendly designs in RACFs minimise risks to a
resident's physical health and also improve their emotional health, by avoiding
confusion for instance. HammondCare provided a comprehensive summary of the
interaction between design and BPSD:
When talking about BPSD in residential aged care, it is
important to recognise that physical environments and care models that are not
suitable can actually exacerbate the symptoms of dementia, even to the point of
creating 'unnecessary' BPSD.
The evidence demonstrates that while spaces designed for
people who are 'cognitively able' can cause stress for people with dementia,
the following environmental features are closely linked to improved behavioural
outcomes: privacy and scope for personalisation in bedrooms; a small
environment and residential character; an ambient environment that provides
'cues' and minimises confusion for people with cognitive impairment; a range of
common areas that vary in ambience; a genuinely homely interior environment;
and hidden exits and 'destination' areas at the end of corridors (no dead
ends).
When these features are missing, it is much more likely that
people with dementia will display excess BPSD, as a result of the confusion and
frustration caused by their environment.[45]
4.40
The committee was informed that even in types of dementia where BPSD is
more prevalent and cannot be entirely controlled, an appropriate care strategy
and environment can significantly reduce BPSD:
There are people whose type of dementia means that they are
more likely to present with BPSD such as people with frontotemporal dementia
and people who have Korsakoff syndrome or alcohol-related brain damage.
For those people, that BPSD may only be able to be managed to a certain
point and you will continue to have that behaviour but it would be best managed
and minimised in an environment that is designed to reduce agitation, reduce
confusion and is small.[46]
4.41
The following example highlights how simple considerations in design can
make a large difference to a person with dementia:
Often you walk into areas that have lots of glitzy carpets
and things like that. The classic would be if you think about some of our
airports, where we use those big swirly carpets and things like that. For
somebody with dementia, that is highly disabling because people cannot have
3D-depth. The problem is that people start to think that they have things to
step over and step around, and that creates some of the fall risks that we have
already talked about. But we see those consistently in some of the designs that
are being drawn up and provided.[47]
4.42
As well as design contributing to confusion and the potential for falls,
other design elements actively contribute to some of the 'difficult' behaviours
some people with dementia display, as illustrated by the following example:
How do you even find the toilet if it is in an all-white
bathroom and you cannot actually see the toilet? Contrast is needed to help
people see where they are going and to use something like a toilet. Things that
are often seen as challenges, like incontinence, could actually be caused by
people not being able to find the toilet because they just see a white area.[48]
4.43
The above example illustrates the importance of utilising dementia friendly
design principles in RACFs. Like handrails are used in bathrooms to support
mobility, contrasting colours can be used in interior designs to assist with
the perceptions of residents living with dementia.
4.44
Rural Northwest Health's Yarriambiack Lodge is designed around these dementia
friendly design principles, including infrastructure changes:
A person with dementia is a normal person who has memory
loss, and so the environment is changed to support their memory loss. We use
external cues to help the residents—hence, the reason we changed the name to
Memory Support Unit instead of Dementia Unit. Research shows that it is easy to
read black writing on yellow paper, like road signs and cleaning signs. The
environment continues to change as the residents change. Residents and staff
wear name badges that are clear and easy to read, prompts are used, materials
look familiar and are taken from the resident's everyday environment. We have
interactive wall spaces which give prompts to staff and relatives. We removed
the large TV from the big room and put a small TV in the old cabinet. The
people who complained the most about the TV being removed were the staff. We
closed the nurses station and changed it into a relaxation room. Spaces that
were not utilised effectively are now being used to a maximum. We had the doors
of a large cupboard removed and had that area transformed into a flower nook, a
sewing nook and a nursery. It disguised the exit door.[49]
4.45
There are useful tools available such as those produced by the Dementia
Enabling Environments Program, a national project focussing on translating
research into practice in the area of dementia friendly environments.[50]
4.46
Many of the entertainment and lifestyle options available to residents
of aged care facilities are not applicable to people with dementia and can
contribute to their BPSD through confusion and boredom. Appropriate cognitively
stimulating social and physical activities protect against the development of
BPSD.[51]
As one service provider noted:
I am sure that if we looked at every aged-care leisure
calendar we would see bingo, movies and newspaper reading occurring daily and
weekly, and if we asked the residents they would tell us that these activities
do not provide appropriate options for people living with dementia.[52]
4.47
It was reported that providing people with dementia with appropriate
activities can also significantly reduce BPSD:
We know from research conducted that wandering behaviours are
often contributed to by boredom and lack of motivation which can be attributed
to low staffing levels, due to inadequate government funding and unskilled
staff.[53]
4.48
The committee similarly heard concerns from carers that RACFs 'often
lack activity and social engagement on a level that is suitable for a person in
the early or medium stages of dementia'.[54]
Person-centred care
4.49
One of the key themes to come out in the evidence to this inquiry is the
need to provide PCC for people with dementia. PCC has been shown to be
effective at reducing BPSD in RACFs.[55]
It has also been identified by patients, carers, service providers and policy
representatives as being a desirable characteristic of community care service
for people with dementia.[56]
At the heart of the matter, individualised care is built upon the recognition
that although someone may have lost their memory, they are 'still real people
behind a bit of fog'.[57]
They still have personal preferences, habits, mannerisms and needs just like
someone without dementia, and these needs must be recognised and met.
4.50
The Psychogeriatric Care Expert Reference Group's Report to the
Ministerial Conference on Ageing provides a succinct explanation of PCC in
RACFs:
Person-centred care is an alternative to conventional care
practices. It considers a person's needs and preferences from a holistic
perspective so that services and supports are organised in a personalised way
rather than attempting to fit within pre-existing service systems. By treating
the person as an individual, person-centred care encourages independence and
autonomy rather than control by carers and/or staff. Use of person-centred care
is becoming more common in residential care because it can reduce need-driven
dementia-compromised behaviours, help maintain personhood and mitigate
cognitive and functional deterioration.[58]
4.51
Brightwater Care Group emphasised the provision of PCC required 'a
radical re-orientation' away from the biomedical model of care toward a
partnership that involves the person with dementia, their family and cares, as
well as RACF staff.[59]
4.52
The committee heard that as a result of the institutional model of care
upon which Australia's aged care industry is based, many residents in RACFs
lose many of their basic freedoms:
We have frequently witnessed situations where people with
dementia are denied the right to decide what will happen in their life. They
can no longer decide: what time they will wake up in the morning, what time
they will get dressed, what they will eat, who they will have relationships with,
whether they can remain at home or go out, how they spend their money, what
they do with their assets, or who they will socialise with.[60]
4.53
The idea of PCC appeared throughout the evidence to this inquiry, but
the committee was cautioned that different providers and individuals may have
very different understandings of what this entails in practice:
One of the things we find in our work both in New South Wales
and across Australia is that, in having generic services for people with
dementia, when we ask people what they mean by the provision of person centred
care to people with dementia it is sometimes defined as what time people have a
shower in a facility. But what we are actually talking about in terms of this
specific group of people is a very specialised serviced where staff need a very
high level of support.[61]
4.54
A PCC approach might ask the person when they wanted to shower, and
accept that on different days the person may wish to shower at different times,
for instance.
4.55
It was reported to the committee that through taking the time to
understand a person's interests and preferences, fulfilling care is able to be
provided to people with dementia. For example, the committee heard about the
approach of Yarriambiack Lodge:
When a new resident arrives, the staff asks the relatives
lots of questions about the person's skills and experiences, likes and dislikes
and his or her hobbies prior to the onset of dementia. They then make use of
the information to design tasks which the person would like to do, like gardening
and cooking, making beds and untangling wool and so on. My mother loved
arranging flowers so her job was to arrange the artificial flowers on the
tables each day. The staff disarranged them overnight and get her to do them
again the next day.[62]
4.56
It was suggested that one of the best ways to ensure personalised care
was to get the family and other care partners actively involved in devising
management strategies:
Really good care planning involves all the partners of care
and in particular family members who know that person very well and they have
quite often already the knowledge as to how best to handle their difficult
behaviours, yet they are not really brought into the mix to the extent we would
like them to be.[63]
4.57
Elder Rights Advocacy (ERA) detailed how families are sometimes excluded
from assisting with the care of their loved ones as some professionals may feel
their professionalism and skills are being questioned.[64]
4.58
The committee heard that to implement PCC it was necessary to understand
each person's individual needs and work to meet those, rather than provide the
same services for everyone, regardless of need or preference.[65]
It was argued that the larger providers are not so good providing services at a
truly individual level:
[I]n more mainstream facilities they have a way of doing
things that they think would work for the majority and they are not good at
adapting that for the individual. That is what they need to learn to do. It is
the underlying concept of where aged care is moving and where NDIS is going,
that you focus on the individual.[66]
4.59
One the key commonalities that RACFs who provided high standards of
dementia care shared was a leadership that had a strong understanding of
dementia and commitment to PCC. Improving dementia care in Australia will also
have to be led from an engaged management and boardroom. The committee heard of
the importance of leadership in driving change and to ensure that all of the
staff follows new procedures and practices.[67]
Change needs to be nurtured from positions of authority as it is a slow and
arduous process to change a culture:
Cultural change takes a minimum of five years, if not 15
years, to become sustainable. Implementing change is problematic and soul
destroying for leaders and managers when they are already dealing with a
complex business, minimal resources, unskilled staff and business owners
expecting a significant return on investment.[68]
4.60
The NSWNMA provided evidence that there is an:
...ingrained management culture where the [nurse's] role is
designed by task completion within an allocated (often impossible) timeframe,
rather than quality of care. This is in stark contrast to the identified needs
of residents with BPSD, for a calm, unrushed, consistent and orderly
environment.
...
It is very difficult to imagine how true person-centred care
or management of complex behaviours related to BPSD can be truly accommodated,
let alone routine 'psychosocial care', leisure and companionship, when staffing
is designed on minimum care, and task orientated care.[69]
4.61
The NSWNMA went on to emphasise the important role that must be played
by senior management in changing the industry's culture to provide PCC:
We believe that responsibility starts with management to set
policies and create a culture where person-centred care can be provided, and to
properly resource nurses and care staff to deliver this care.[70]
4.62
The committee was informed that following a person centred approach
could actually save staff time, as well as being more beneficial for the person
with dementia:
Coming back to staff being able to provide care that is
individualised: if a person can themselves, it is actually less work for the
staff member; if they can walk to the dining room, it is less work for the
staff member; if they are not being aggressive and wandering, it is less work
for the staff member. But the focus is always on: 'We'll do this, this and
this, and it is quicker for me to walk you up in a wheelchair and shove the
food down your throat than it is for you to feed yourself'.[71]
4.63
The committee did hear concerns, however, that it is difficult to
appropriately staff small facilities so that staff have time to engage with
residents—'looking at their hobbies, their biography, their history'—while
staying within budget.[72]
Specialised dementia facilities?
4.64
The importance of having appropriately designed and staffed facilities
to care for people with dementia prompts the question of whether people with
dementia need to be cared for in special dementia facilities, or whether they
ought to be—and can be—cared for in mainstream residential facilities.
4.65
There appears to be a lack of agreement regarding what is a dementia
unit, and how dementia care can best be provided:
There is no definition of what a dementia unit is; there is
no definition of what a dementia-specific unit might be. And there is a bit of
a [divided] view between providers about the extent to which you need special
capacity – mainstream can manage quite well – depending on the staff.[73]
4.66
The committee heard that even many care units designated as 'dementia
units' are not appropriately designed for people suffering from the effects of
dementia:
[The] dementia unit has 30 beds and is huge; I have actually
got lost in there myself. It is not an environment suitable for people with
dementia or with behaviours of dementia but it is not uncommon for us to see,
particularly in the new, flash facilities, large dementia units.[74]
4.67
It was noted that many RACFs that offered low-care dementia support
often provided the same services to persons with dementia as well as other
residents.[75]
The committee heard that many RACFs cannot provide, or do not feel able
to, care for people with BPSD resulting in those people being passed from one
provider to another:
[C]onventional aged care facilities are often unable to
accommodate people with acute BPSD. In our experience, they end up 'bouncing
around' the system, unable to find a suitable care setting. These people
experience distress and upheaval as they are subjected to inconsistencies in
approach and uncoordinated variations in medication. This can lead to
significant negative side effects including increased stress and trauma to the
people with BPSD and their families. As well as posing high risks and
increasing distress...constant transfers are also costly and extremely inefficient.[76]
4.68
The committee heard that people displaying BPSD are scattered throughout
the aged care system and do not receive the care they need in an appropriate
environment:
[The] way people are cared for in mainstream aged care is
generally as a small cluster of people, possibly smaller than five people per
service. What that means is that the services are generally provided ad
hoc and people with BPSD are within a larger group of people.[77]
4.69
It was pointed out that providing PCC is difficult in traditional aged care
facilities, where the behaviours associated with dementia are seen as a problem
to be managed:
It is about being able to intervene before a person's
behaviour escalates...That is not generally achievable in mainstream aged care
because it is perhaps one or two scattered people and they are perceived as
people with a problem. In order to manage that person's needs within an
environment that is not suited for them they will be bounced around the system
and perhaps be inappropriately restrained chemically or physically.[78]
4.70
Having people with untreated BPSD in ill-equipped RACFs can also be
distressing for other residents:
My mum is in another nursing home. They do not have a
dementia unit but they do have dementia patients. At night time, Mum gets
really upset because of their wandering and screaming sometimes.[79]
4.71
The committee received evidence that dementia-specific facilities such
as the former ADARDS facility are able to effectively manage and reduce BPSD
through person centred care.[80]
4.72
Mission Australia was clear that people demonstrating BPSD should be in
specialised facilities for their benefit and the benefit of other clients in
aged care:
In our view and experience, the strategy of integrating BPSD
clients with other clients in aged care facilities poses significant issues and
impacts on the overall delivery of service delivery. As a result Mission
Australia believes that younger and older Australians living with behavioural
and psychiatric symptoms of dementia need to have specialised care.[81]
4.73
This view was not held universally:
I am one of the probably few people who do not believe that
people with dementia should be in a separate facility. They are people. We do
not put everyone with arthritis in one facility so that it is easier to care
for them. I think people with dementia are often misunderstood.[82]
4.74
Elder Rights Advocacy emphasised that, given the numbers of people
living with dementia in RACFs, it must be expected that the RACFs cultivate the
ability and tools to care for those people in an appropriate manner.[83]
Some providers reported to the committee success in reducing the incidence of
BPSD through improved training and management in a non-dementia specific
environment.[84]
Committee view: best practice care
4.75
Aged care in Australia is not always well suited to the needs of people
with dementia, especially those with BPSD. There are areas where there is broad
agreement that care can be improved, such as facility design and staff training.
Staff training is discussed more fully in the next chapter of this report.
4.76
There is no single correct model of care for dementia. This report has
highlighted some of the best practices of organisations including Wintringham,
Rural Northwest Health, HammondCare and the BrightWater Group. These models of
care provide a higher quality of life for people with dementia than have
previously been offered. A common thread joining these organisations'
philosophies together appears to be a strong focus on PCC, high levels of staff
training and investment from management. Innovation among these providers and
the RACF sector as a whole is to be encouraged. The Commonwealth can play an
important role to support and publicise these developments.
4.77
Given the high incidence of dementia among residents of RACFs, it cannot
be left to dementia-specific facilities and providers to shoulder the entire
burden. All RACFs need to have the staff and expertise to manage residents
suffering with dementia. All RACFs must take important steps to improve the
lives of those living with dementia.
4.78
These steps include ensuring that facilities are designed and fitted out
in a way that is appropriate to the needs of people with dementia and other
mental illnesses. This chapter has highlighted the importance of a person's
environment on the incidence of BPSD. These design principles can be included
in new facilities built to meet the need of an ageing Australia, as well as being
retrofitted to existing facilities as items, fittings and furnishings require
replacement.
Recommendation 8
4.79
The committee recommends that the accreditation standards for
Residential Aged Care Facilities include requirements for dementia-friendly
design principles.
Recommendation 9
4.80
The committee recommends that the accreditation standards for
Residential Aged Care Facilities reflect a better balance between clinical and
quality-of-life outcomes.
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