Community care aims to assist a person with dementia to live in their
own home for as long as possible so that the person can remain with their
family and in a familiar environment. In Australia, the majority of people with
dementia are living in the community.
Appropriate community care can prevent early admission to residential care for
people with dementia, as well as improve their quality of life before they
reach residential care.
It is estimated that delaying the entry to residential aged-care saves the
government significant amounts of money.
National Disability Services' (NDS) evidence highlighted the importance of the
work of informal supports to the public purse:
[T]he public system funding could not afford it if families
did not continue to perform the very important role of supporting a person [in
This chapter considers three key issues regarding supporting people to
stay in the community for as long as possible: finding and accessing the supports
that are available to keep people in the community; the adequacy and
appropriateness of those supports; and respite care.
There was a general agreement among submitters that, for most persons
living with dementia, it is better to remain in the community for as long as
possible, rather than move into a residential aged care facility (RACF).
It was put to the committee however, that for people living alone, residential
care may be more appropriate depending on that person's level of care need.
Also, some Behavioural and Psychological Symptoms of Dementia (BPSD) are very
difficult to manage in the community and can best be catered for in a
Supports to keep people with dementia in the community
There are a number of services and supports provided by the Commonwealth
to people with dementia living in the community. State and Territory
governments, as well as the non-government sector, also provide some services
for people with dementia.
Since 1 August 2013, the primary support to assist people to remain in
the community is the Commonwealth-funded Home Care Packages Program (HCPP).
The objectives of the HCPP are to assist people to remain in the community for
as long as possible, and for consumers to have choice and flexibility in the
care that is provided in their homes.
There are four levels of Home Care Packages:
Level 1 – to support people with basic care needs;
Level 2 – to support people with low level care needs;
Level 3 – to support people with intermediate care needs; and
Level 4 – to support people with high care needs.
While these packages are targeted at 'frail older people', there is no
minimum age limit to access HCPP.
Therefore, people with a diagnosis of younger onset dementia (YOD) can access
In recognition of the added costs of managing dementia in the community,
the Dementia and Cognition Supplement in Home Care is available at all levels
of home care to support people with dementia. The supplement provides a 10%
subsidy level to eligible clients. This supplement replaced the former Extended
Aged Care at Home Dementia packages.
The HCPP Guidelines make clear that providers of home care services 'should
also have policies and practices that address the provision of care for people
The HCPP provides an important tool in assisting people to stay in the
community for as long as possible. Chapter 2 of this report highlights how
dementia can alter a person's perceptions of the world. The challenges—such as
trips and falls—created by these changing perceptions of the natural world can
be minimised through sound design practices. It has been shown that use of
sound design principles can also minimise BPSD; a key trigger for entering
There are guides available that highlight simple changes that can be
made to the environment in order to improve accessibility by someone with
dementia. For example, HammondCare produces:
...a guide around the environment in people's own homes to help
families make better decisions around fixing the environment so as to be able
to support people who have dementia stay at home longer.
Similarly, the Dementia Enabling Environments Program has created a
number of free resources translating research on dementia-friendly environments
As well as providing services (such as meal preparation and transport),
HCPP can also be used for home modifications to enable people with dementia to
remain at home and safe for longer.
Another important support measure is the Home and Community Care
which can be accessed by all Australians over the age of 65; those who are at
risk of premature or inappropriate admission to long-term residential care; and
carers of people eligible to access HACC services.
HACC services provide access to a broad range of services from domestic
assistance to transport, counselling, centre-based care, and respite care.
People with dementia, including YOD, can typically access HACC due to being at
risk of entry into residential care.
Planned Activity Groups (PAG), which are typically funded through HACC
and delivered by non-government organisations and health service providers,
provide support for people living with dementia and their carers. The Victorian
HACC program manual explains:
Planned activity groups support people's ability to remain
living in the community by providing a range of enjoyable and meaningful
activities. These activities support social inclusion, community participation,
and build capacity in skills of daily living.
Planned activity groups are designed to enhance people's
independence by promoting physical activity, cognitive stimulation, good
nutrition, emotional wellbeing and social inclusion.
The foremost dementia specific service the committee heard about was the
Dementia Behaviour Management Advisory Service (DBMAS), a program that provides
clinical support for people caring for someone with dementia who is
demonstrating BPSD which is impacting upon the care they receive. DBMAS'
website explains the role and function of the scheme:
The role of the DBMAS program is to improve the quality of
life of people with dementia and their carers where the behaviour of the person
with dementia impacts on their care. This is achieved by improving the dementia
care capacity of care workers, carers and service providers.
DBMAS is sensitive to each person's dementia journey being
unique. As a result, our teams are equipped with a diverse range of clinicians
who undertake thorough individual assessments and care planning that assists
carers in supporting the person with dementia and establishing links to
appropriate support networks.
The DBMAS provides a highly valuable resource that can be used by carers
and medical professionals alike to receive high quality advice regarding the
treatment of dementia.
Since 2007, eight organisations have been delivering DBMAS activities in each State
The committee heard that, in an appropriate environment with an
appropriately trained carer, a person with dementia and BPSD can be
successfully accommodated in the community:
[It] is our responsibility to get the environment and our
behaviour towards people correct. It is not to say that this is not really
difficult sometimes; I am not trying to minimise it. But what we have seen time
and time again is that it can be done. Research is starting to give a lot of
validation to the different ways of doing this. It extends from education and
support for families and care givers so that they can understand the degree to
which they can put themselves in a person's shoes and so keep a situation calm,
through to all sorts of institutional approaches. It goes across the gamut of
care situations, and it can make a difference—at least to a degree and
The Commonwealth funds groups such as Alzheimer's Australia to provide
services such as the National Dementia Hotline, as well as education and
training courses for carers.
Illustrating the importance of equipping carers to undertake their role, the
committee was encouraged to consider one case of dementia having two clients
that need support from the health care system: the person with dementia and
Groups like Alzheimer's Australia provide support for carers in
transitioning into their roles as the primary support for someone with dementia.
The committee heard, for instance, that Alzheimer's Australia ACT provides
education services for carers:
They have programs for carers, not only the course on living
with memory loss but eight sessions, I think, for carers about communication
and what to expect and how to deal with different aspects. They run that, and
they also have a dementia network where they do training and have speakers come
in, for everybody really but specifically for people working in the dementia
Critical to keeping people in the community is adequate care and support
for carers. Alzheimer's Australia NSW emphasised that 'strategies to increase
the capacity, resilience and knowledge of carers...in the care and management of
BPSD is critical'.
Carer training was reported to the committee as 'a huge area that we are going
to need to address if we are going to successfully support people to remain in
the community and support families to do that'.
As was discussed in chapter 2, BPSD often occurs in response to unmet
need. Providing carers with the tools that they need to understand behaviours
and remedy them is important in keeping people in the community for longer. DBMAS
provides some education services to families and carers to help them provide
care in the community.
The committee heard that Massive Open Online Courses
for dementia training, which are facilitated by the University of Tasmania, had
attracted over 9,000 enrolees.
Alzheimer's Australia Victoria's Perc Walkley Dementia Learning Centre has
developed a virtual reality suite that allows stakeholders to experience what
it is like to have dementia. Resources such as this represent remarkable
advances in improving understanding of dementia among carers, health
professionals and the community.
As well as these cornerstone supports, the committee received evidence
regarding numerous pilots and programs that are currently being run around
Australia to assist people with dementia and their carers remain in the
community. This report does not attempt in any way to provide a definitive
discussion of the support options available to people. Instead, it discusses
systemic issues that were raised in evidence.
Accessing and navigating dementia support
For most people, the first step to receiving treatment for dementia is a
diagnosis from their General Practitioner (GP), who typically refers that
person to an Aged Care Assessment Team (ACAT). ACAT's role is to:
...comprehensively assess the care needs of frail older people
and assist them to gain access to the types of available services most
appropriate to meet their care needs. This may involve referring clients to
community care services, such as those available under the [HACC] program,
which do not require approval under the Act. Alternatively, they may approve a
person as eligible for Australian Government subsidised aged care services,
including residential, community and flexible care services.
Following a referral by a GP, ACAT visits the person in their home and assesses
their eligibility for available services.
In addition to the aforementioned government services, the committee
heard of a number of providers that provide people with dementia and their carers
with relevant information, counselling and training. Unfortunately, many of
these services appear to be fragmented and poorly integrated resulting in
people receiving less than optimal support at a time of great need. As
illustrated by BlueCare:
Aged care providers and clients and families find having a
range of services that can assist with behaviours confusing as to what services
provide and which services should be contacted in specific needs. An example of
this is DBMAS (providing assistance to residential and community services), The
Dementia Outreach Service (providing assistance to residential staff in Metro
South Health district) and Ozcare's [Dementia advisory and support services]
(providing assistance to HACC funded services) who all provide a similar
service but have slightly different referral systems. This often constitutes a
duplication of services and may not be the best cost effective option.
'Generally, you have to do the legwork yourself to find out what is
available', reported one carer to the committee.
The committee similarly heard from other carers that, at the same time as you
are coming to terms with a life-changing medical diagnosis, you must also
identify what help is available, what needs to be done, and how to manage and utilise
the support that is available.
The committee heard that some people might be fortunate enough to encounter a
provider or doctor who had a good understanding of the system but there is no
centralised point of information and support.
Improving access to dementia
For most people, it appears that it is necessary to undertake a
substantial amount of independent research in order to find the services that
are appropriate to them. It is hardly surprising that few people in the
community have turned their mind to the issues of accessing care and support
services prior to a diagnosis of dementia being received. There were a number
of suggestions put to the committee regarding how access to dementia services
could be improved.
One suggestion to improve the transition into care was to ensure that
GPs are appropriately informed of the available services in their area, and
advise patients at the time of diagnosis what support is available. As Carers
Australia put it:
[When] somebody is first diagnosed, it is incredibly
important for the GP to take some time right away to talk to the carer and
explain what is going to happen and tell them what support services are
available to them. Accompanying that there may be a need, too, for GPs to have
more [of] such information systematically available to them.
Alzheimer's Australia similarly emphasized the important role of medical
professionals in ensuring people with dementia receive the help they need:
It is important that doctors refer to services more efficiently
than they do. Some doctors do it automatically, and they refer to us, Carers
Australia or the local ACAT team. I think doctors are very important, and we
are working on a number of strategies that encourage doctors, as well as
practice nurses and nurse practitioners, to do that.
The Department of Health and Ageing (Department) nominated Medicare
Locals as a prospective point of coordination, noting that their purpose is
to work with stakeholders 'to ensure that patients receive the right care in the
right place at the right time'.
Another suggestion put to the committee to improve the accessibility of
dementia care services was to expand the gateway and key worker initiatives
from the Living Longer, Living Better aged-care reforms. At present, the
Commonwealth is trialling a
Younger Onset Dementia Key Worker Program (KWP) which
is being implemented by Alzheimer's Australia.
The Department explained the purpose of this program:
One component of [Living Longer, Living Better] is the roll
out of a national network of key workers to act as a single point of contact
for people with younger onset dementia. Key workers will help younger people
with dementia to access the care and support services most appropriate for
their needs, to navigate the care system, and to achieve their long and short
Alzheimer's Australia argued that the KWP should be extended to older
people with dementia as 'their need is almost identical to those of younger
people in that key sense'.
Services for Australian Rural and Remote Allied Health (SARRAH) recommended the
employment of key workers 'to ensure timely diagnosis, management, treatment
and the provision of emotional and social support'.
The Department informed the committee:
The government's view is that it wants to understand how [the
KWP] works with the younger onset group first before any further expansion of
the program is considered.
Trial funding of $18.2 million runs from 2012–13 to 2015–16, after which
time an 'independent evaluation of the service' will be commissioned to assess
the effectiveness of the program.
The Department's submission highlights the document Dementia Services
Pathways – An essential guide to effective service planning (DSP) as a key
tool to help in 'the planning of support services once dementia has been
The Department's submission itself goes on to note that '[DSP] encourages the
use of a key worker for the management of people with dementia to ensure
appropriate treatment along the pathway'.
Some community groups have voluntarily incorporated the principles of a
key worker scheme into their own practice. The Brotherhood of St Laurence,
for instance, reported:
We have developed a model of dementia care called 'The
Dementia Care Pathway': this assists clients/carers and professionals to
negotiate the journey through the dementia experience and involves a Dementia
Care Consultant and Dementia Care Coordinator who provide expertise,
consultancy, advice and support.
Another suggestion to improve the ability of people with dementia and
their carers to better access support services was the use of a Gateway—such as
that proposed for the National Disability Insurance Scheme
(NDIS)—or centralised portal of information and services.
Alzheimer's Australia's Chief Executive Officer expressed doubts—also
articulated by other service providers—about
a gateway replacing the key role of medical and other professionals:
The gateway may eventually be important. It is a long way off
in terms of resources and development, but that is another piece of the jigsaw.
I think a lot of people with dementia and family carers want the human face
rather than a checkpoint. That is resource-intensive and quite expensive, but
that is what consumers would like.
The critical role of a human face to support people during times of need
is recognised in the National Disability Insurance Scheme with Local Area
Coordinators complementing the gateway system. It also should be noted that
DBMAS and groups such as Alzheimer's Australia already provide large amounts of
information, contingent on consumers being made aware of these key portals.
The Australian Government, along with its State and Territory
counterparts and the community sector, provide many supports for people with
dementia and their carers. However, these supports do little good if people do
not know about them or how to access them. At present, it appears the
accessibility to information about many of these services could be improved. Based
on the evidence received during this inquiry, the committee is of the view that
dementia key workers are an important conduit linking clients and providers,
providing community education, and working with local medical professionals.
The committee recommends that the Commonwealth consider increasing
funding for the Younger Onset Dementia Key Worker Program in order to provide
support to all people living with dementia. The increased funding should
also ensure that accurate data is collected for evaluation purposes.
The committee recommends that each State and Territory develop dementia
training facilities similar to the Perc Walkley Dementia Learning Centre in Victoria.
Adequacy of community care
Under resourcing of existing
The committee repeatedly heard—from carers, community organisations, and
service providers alike—that the work of bodies such as DBMAS and ACAT was
hamstrung through critical underfunding. Stakeholders suggested that it is not
a matter of a lack of tools, but that there are not enough of them.
Despite DBMAS' key role in providing dementia care in Australia, DBMAS
was reported as being critically underfunded.
Alzheimer's Australia argued:
I think we should double the resources available to the
Dementia Behaviour Management Advisory Service, because they support not only
families but now acute care, GPs and residential care and community care
services. They really are very much underfunded.
Representatives from the Tasmanian Government articulated just how
thinly this resource is spread:
It is a tiny resource. It equates to about 3 ½ clinicians or
so – give or take half a clinician – across Tasmania. When you are asking a
service to deal with disturbed behaviour not just in nursing home settings but
in acute care settings and community settings, I think you will get some idea
of how thinly that resource is spread.
There were several calls to expand the DBMAS program to help it meet, or
at least better address, the demand for that service.
The Department reported that DBMAS is being expanded through additional funding
of $12.5 million (over five years) as part of the Living Longer,
Living Better aged care reforms.
The committee heard concerns regarding the provisioning of ACAT teams. The
Australian Medical Association (AMA) reported that 'timely access [to services]
is frustrated by long delays with ACAT assessments', despite 'early access to
services delivering better outcomes to patients and their families and carers'.
It was also put to the committee that, because of inadequate resources,
ACAT were only able to perform basic assessments of eligibility and not provide
the level of advice that the community might expect:
ACAT is now so busy that they tend to assess people as to
their eligibility for packages. If that person is not impaired enough, if they
are in the early stages, ACAT does not usually have the capacity to do any sort
of case management. I know there are exceptions to that, and I have talked to
some wonderful small teams in rural areas that do all that, but in big city
areas they just do not have the capacity to plug people into, say, a program
like Alzheimer's Australia's Living with Memory Loss program, some home care,
whatever the council might be running, dementia advisory services.
They assess people as eligible for the packages, or for
residential aged-care, and they then have to move on to the next case. And if
the person [is] not actually eligible for a package – they are functioning
okay, with maybe a little bit of cognitive impairment and perhaps not really
able to manage their money so well, or the house is not looked after as well as
it could be but is not too bad – they will just say, 'Oh, you are all right: we
will come back next year' or something.
The strain on the ACAT team was highlighted by the example of a former
I am still hearing today, that people are being told, that
unless they want a placement in a residential care facility, do not ring for an
ACAT, as they are so under resourced they cannot do [assessments]. The
assessment team are not even recommending people be assessed for respite, due
to them not being able to cope with demand.
The limited resources of ACAT affect access to respite care.
To access Commonwealth funded respite, it is necessary for ACAT to have
conducted an initial assessment, a process that the committee heard can take up
to three months.
In crisis situations, this requirement results in patients being admitted
to hospital rather than a more appropriate respite setting, causing great
distress to the patient and their carers.
The committee was provided with data from the
Department of Social Services (DSS) regarding the average
waiting times between referral and first face-to-face contact under the Aged
Care Assessment Program (ACAP). This data reveals that since 2008–09 the
average wait time for a person with a diagnosis of dementia has decreased from
23.7 days to 17.2 days in 2012–13.
While this is a positive sign, the committee does note that during the same
period there has been a greater than 20% reduction in the number of assessments
completed on clients diagnosed with dementia.
It was suggested to the committee that many patients should be put into
contact with HACC prior to ACAT, but that many GPs 'are not aware of the local
HACC phone number, how it works, who they should send the person to and so on'.
The Brotherhood of St Laurence emphasised:
General Practitioners are most people's link with the primary
health system. It is therefore essential that GPs be educated and made aware of
the resources available within their communities to assist their patients.
The committee heard that there is often a gap between people needing a home
care package and being eligible for assistance. As the ACAT teams are so busy,
they are often unable to conduct assessments for people who are in the early
stages of dementia. Improved education for GPs regarding the dementia support
services that are available was nominated as one tool that could be used to
improve the interface been patients and services available.
The idea behind this appears to be that GPs would only refer a person to ACAT
once they reach the level of eligibility for assistance. Although this might
relieve some of the pressure on ACAT, the committee does not consider it to be
a reasonable solution. The ACAP is supposed to be a support service, not only a
gateway to funding. As explained by the Department of Human Services:
The core objective of ACAP is to comprehensively assess the
care needs of frail older people and to assist them to gain access to the most
appropriate types of care, including approval for Commonwealth Government
subsidised care services.
In the opinion of the Royal Australian College of General Practitioners
(RACGP), it appears that due to the current shortcomings of the system, many
people are allowed to continue in the community with a minimum of supports
until a crisis occurs and the person is adequately looked after.
The committee recommends that the Commonwealth encourage relevant
professional organisations, such as the Royal Australian College of General
Practitioners, to ensure that patients diagnosed with dementia and their carers
are informed by health professionals of the dementia supports available and how
to access them.
Gradation of care
Evidence indicates that many dementia patients enter residential care prematurely.
This may be partly explained by gaps in the spectrum of support services.
Ideally, the care (and funding) available to a person would allow services
between community and residential care to overlap.
The committee was informed that this was often not the case, and that
carers were forced to prematurely put their loved ones into residential care as
they had reached the end of their community care funding package.
As BlueCare submitted:
A care package may not be adequate or flexible enough to
provide the supervision and support the person's needs, so a transfer to a residential
care home is often the next step to ensure that [the] person is not at harm to
themselves or others.
Some evidence suggested that the person with dementia—and their families
and carers—would benefit from funding to remain in the community longer:
Senator BOYCE: We are talking about people who, in
your view, could remain at home with sufficient, extra support?
Mrs Nicholl: People would be able to stay at home—yes,
I believe so. There are particular cultural issues for families as well, when
it comes to caring for their loved ones at home. When they find themselves
having to place their loved ones into residential care, the particular family
member who has been the primary carer is still going into residential care on a
daily basis, from first thing in the morning until last thing at night. So
really they would be much happier if they were at home with the supports. It
would be much better for that care recipient as well because they would be in a
The early entry to aged care of people with dementia can partly be
accounted for by evidence received by the committee that community care is less
effective at managing mental health than for physical ailments.
As Helping Hand explained:
[People] are often assessed in a system which relates to
functional decline rather than psychological decline and therefore funding is
inflexible to meet the behavioural needs of people living with dementia.
The committee received evidence indicating that caring for people with
dementia in the community presents a different set of requirements than the
requirements traditionally associated with ageing:
Traditionally, community care services have focused on
supporting people who are frail and elderly. There has been a standard range of
interventions that are appropriate in supporting people with physical
limitations, and this care often tends to be task focused.
Such a standard community care approach does not work well
for people with a dementia. While people with dementia may have health issues
that need to be managed, other issues such as memory loss, confusion, impaired
judgement and impaired interpersonal skills are the major risk factors in their
The Brotherhood of St Laurence also noted that the current community
care system falters once people with dementia begin displaying multiple BPSD
and developing complex needs:
[Services] such as day care [are] vital to living in the
community...there is also evidence that the current structure is unable to meet
the needs of individuals who are showing more than one behavioural symptom of
dementia. This exclusion not only has a detrimental impact on the person with
dementia but also impacts on their carer and places both at risk of isolation.
Evidence received from one carer highlighted the lack of gradation in
service provision, especially during the later stages of community care:
The real fact of the matter is that the higher the needs are,
the more the doors actually close. It is very ironic that the more you need
help as needs increase, the less there is out there. When Chris was low care,
we had fabulous support. But as his needs changed there was less and less
available out there.
It should also be noted that encouraging people to remain in the
community at all costs may not be in the person's best interests. Depending on
a person's familial situation, the appropriateness of remaining in the community
and the level of care received under existing programs may vary. People living
in the community alone were reported to the committee as being those most at
risk, with community care services most needed to provide appropriate
nutrition, medication management and social, emotional and practical support.
The committee believes it is important that people who wish to do so are
supported in the community for as long as possible. The introduction of the
dementia supplement at all levels of home care goes some way toward addressing
the high costs of caring for someone with dementia in the community. Due to the
currency of the Living Longer, Living Better reforms, the impact on
community care is not possible to assess at this point in time. It appears that
the greater availability of the dementia supplement, as well as four discrete
levels of care packages, may improve the care received by people with dementia
in the community.
There does appear to remain a tension however, between a system that was
designed to deal with age- and disability-related physical decline, and the
needs of a person with dementia who may be physically able but has
significantly impaired decision-making facilities.
Respite care for people with dementia
Respite care provides an important component of Australia's community
care infrastructure. Respite care facilities provide short-term accommodation
for people with disabilities and illnesses in order to provide time for their
carers to attend to their own mental and physical health needs.
The Commonwealth funds respite care through the National Respite for
Carers Program (NRCP), which includes planned and emergency respite,
Commonwealth Respite and Carelink Centres, Carer Counselling Services, Carers
Australia, and Consumer Directed Respire Care.
It was pointed out to the committee that:
The NRCP program does fund some agencies to deliver respite
care to people with high care needs; however there has been no growth in funds
since 2007 to meet the increased demand or provide alternative models of
respite for people with more extreme BPSD.
Respite care is also provided by HACC and residential care homes. The
committee heard evidence that the not-for-profit sector was heavily subsidising
the provision of respite care for people with dementia.
From 1 July 2015, the Commonwealth Home Support Program (CHSP) will
This new and streamlined approach will bring together under
the one program all the services currently providing basic home support - the
existing Home and Community Care program for older people, the National Respite
for Carers Program, the Day Therapy Centres program and the Assistance with
Care and Housing for the Aged program.
In developing the CHSP, there will also be a large-scale review of the
services offered through the program.
Importance of respite for carers
Carers play a key role in supporting people with dementia in the
community. There should be no doubt that caring for a person with dementia is a
physically and emotionally demanding task. It was reported to the committee
that four out of five carers provide more than 40 hours per week of care.
The committee heard that the stress of providing care can result in the carer
themselves being hospitalised.
For people without an able spouse, the care of a person with dementia
often falls on adult children who themselves are juggling careers and young
The evidence received by the committee from Carers Australia indicates
that respite services are of particular importance to carers of people with
Dementia brings with it a great emotional and physical strain
for carers. So it is hardly surprising that carers of people with dementia are four
times as likely to use respite services as the average for primary carers
and that unmet need for respite is rated as the greatest area of unmet need.
Respite services also provide an opportunity for the person with
dementia to socialise with others and engage in activities that they enjoy
outside of the home.
The adequate provision of respite care for carers of people suffering
from BPSD is particularly important, but also particularly challenging. As the
The increased demands of care associated with BPSD impacts on
the wellbeing of family carers and can lead to stress, burn-out and depression.
Carer stress is a major reason why people exhibiting BPSD are admitted to
residential aged care homes earlier than people without BPSD.
Alzheimer's Australia NSW similarly noted, 'Carers identify BPSD as the
most stressful aspect of the caring role, as well as being a trigger for
admission to residential aged care'.
BlueCare noted that 'if more respite services [were] available this would
assist family carers to keep the person living with dementia at home for
One carer reported having to place her husband into permanent residential care,
but noted: 'I could have kept him at home longer if there was adequate high
With a similar emphasis, the Office of the Public Advocate – Queensland
explained the importance of respite care:
While the provision of respite may not be seen to be as
critical as other supports, it is a key strategy to enabling people to remain
living in their home and community for as long as possible. Caring for a person
living with dementia and BPSD, particularly as the syndrome progresses, is an
around-the-clock role that can lead to physical fatigue, emotional exhaustion
and social isolation. Respite can help carers remain in their caring role for
longer, [thereby] reducing the need for additional and more costly supports.
The importance of appropriate respite facilities was highlighted in
evidence provided by the Brotherhood of St Laurence:
It has been the [Brotherhood of St Laurence] experience that
when the carer is notified that day care / respite can no longer be provided,
many carers will then decide to place the person into residential care.
Despite the obvious importance of this service, the committee heard a
number of shortcomings and failings within the current respite care system as
it relates to dementia, and especially BPSD. The committee heard that respite
care is often not flexible enough for dementia patients and their families, nor
is it appropriately structured for dementia care.
BPSD and the provision of respite
Caring for people with dementia in respite care poses a different set of
challenges than dealing with a person whose care needs are principally physical
In particular, it was pointed out to the committee that the standard
two-week stays of traditional respite care do not work for people with dementia,
who require stable environments:
Research says that it is best for the person to keep the continuum
of care going, if possible. If you are going to have a shorter stay than a
two-week block, at this point in residential respite your option is a two-week
block. That is a long time for a person with dementia, because it is a totally
different environment, a totally different environment and so form. So when
they get back home it takes a long time for the carer to settle that person
In light of this, it is little surprise that the most popular forms of
respite for carers of people with dementia were reported as bringing a paid
carer into the home; going to a home-like environment which specifically cater
to dementia; or family holidays accompanied by a paid carer.
Knowing that significant changes in environment are disruptive to a person with
dementia, these options may be the only ones that a carer views as viable.
Unfortunately, it was reported that these options are 'thin on the ground and
One of the reasons for the popularity of these approaches is that they keep the
person in a familiar environment. BlueCare explained the importance of a
Respite in an unfamiliar surrounding can be particularly
stressful for the person living with dementia and can be the catalyst to return
early due to changes in the person's behaviour as a result of the disruption to
their usual routine and familiarity of the people around them.
Indicative of the way that many carers of people with dementia view the
available respite care is that only 27% of individuals with dementia approved
for residential respite care actually use these services.
Alzheimer's Australia notes the various reasons for this underuse:
Important contributory factors are that respite care is
inflexible and is not available at the right time or provide insufficient hours
of care. Consumers for their part may be reluctant to use a service because
there is no perceived benefit for the person with dementia. Service providers
may feel unable to provide and appropriately support individuals with BPSD.
Family carers report that once the person with dementia develops BPSD services
refuse to continue providing support.
The committee heard that it is extremely difficult to access high-care
respite, such as is required for someone with BPSD, as there are very limited
facilities and long waiting lists. One carer reported that '[finding]
pre-booked, high-care respite, in a memory support unit in residential care was
Existing dementia facilities are often either not appropriately equipped to
deal with BPSD or they lack the human resources to effectively manage people
Helping Hand observed:
Respite care in residential facilities is difficult to access
as it tends to be in communal, non-secure, areas so precludes people who wander
or may have challenging behaviours, also many people have high needs, and
receive reduced stimulation and activity, are at risk of decline and may
struggle to return home.
Facilities that are not equipped to deal with BPSD also present
challenges to the person with dementia and their carers. As explained by Carers
[F]inding suitable respite options for people with dementia,
particularly those with moderate to severe BPSD, is not an easy ask. People
with dementia have a very marked level of discomfort and resistance when
removed [from] their familiar environment and familiar routines. Carers often
remarked that the long-term cost of taking a break is not worth the effort since
it can take weeks for the person they care for to settle down again.
Due to facilities recognising that they cannot provide sufficient care
for some people with BPSD, they do not offer services for that group at all:
[It] is not unusual for our clients with dementia and BPSD to
be denied placement at community respite centres purely because the level of
services available do not meet the needs of clients. Issues such as
inappropriate building environments, lack of staff expertise in assisting
people with BPSD and unsuitable hours of operation are paramount in this lack
In addition to existing services being poorly suited to the needs of
people with dementia, the structure of two-weeks respite care is a poor fit for
service providers. The following example illustrates the difficulties of
providing traditional respite care to a person with dementia and BPSD, their
carer and the service provider:
When a person needs to go into residential respite and they
have those behaviours of concern, the residential services are unable to
support that person for those two weeks, because they need a lot more intensive
support than you can be given in residential respite...I have had reports where a
carer has been called, after the person with dementia has been in respite two
or three days, saying that they are unable to be supported in that residential
respite because of those behaviours. So there are people out there who are
unable to be supported within residential respite.
Evidence received from Alzheimer's Australia makes a similar point,
noting that extra funding will be required to address the problem of
appropriate respite for carers of people with BPSD:
The real difficulty is for people with moderate to severe
BPSD in the community. We come across numerous cases of a carer saying: 'I had
a booking. I took my person along, and two hours later I got a call saying to
bring them home.' That is why we are saying that, if you do not reward respite
care services and give them extra funding so that they can train their staff
for that and maybe for social engagement activities that make the person relax
so they go home in a reasonable state, you are not going to win.
It was argued that some people with dementia—who may have trouble accessing
traditional respite care—could be effectively managed in day care as 'often
those behaviours tend to happen in the evening and overnight'.
Recognising the importance on maintaining the continuum of care, several stakeholders
suggested that greater use of short-stay and day respite should be encouraged.
For instance, the Brotherhood of St Laurence contended:
It is really important to ensure that there are day programs
that are especially designed for and provide that specialist care to people
with dementia. We know that the demand for dementia care will increase as the
prevalence of dementia increases.
The Brotherhood of St Laurence reported success in providing three-day
breaks for carers, which is long enough for carers to receive some tangible
respite from their caring role but short enough to avoid unduly disrupting the
care routines already established at home.
Carers reported little evidence of disorientation when people returned home
from this short-stay service, and the high staff-client ratio enabled staff to
emulate the routines that the person is used to receiving at home.
The committee heard of a small number of facilities across Australia
that provide suitable respite care for people with dementia and BPSD.
The existence of these services—however few of them there currently may be—highlights
that it is possible to provide suitable respite care for people with dementia
Benetas argued that there is a need to review the way that respite care is
accredited and funded to ensure that respite providers in receipt of government
funding are able to do so for those who need it most:
In this regard it is no longer acceptable to tie respite
funded services to centres which operate more or less as senior citizen's
community centres. Given the rapidly increasing number of older people with
dementia and BPSD all respite services for older people need to be able to
accommodate those people with dementia. Consequently policies for the National
Carers' Respite Program need to be reviewed and amended, where appropriate, to
ensure funding from this program only goes to those services which can
demonstrate they can provide quality respite services for older people with
dementia and BPSD. These services need to demonstrate they have suitable
buildings, appropriately trained staff and offer flexible hours of service to
be eligible for specific respite funding.
Alzheimer's Australia also argued for service providers to meet
certain standards around training and staffing levels:
Service[s] which provide respite to clients who have dementia
supplement would be required to show they were providing appropriate care
including having staff with appropriate training and qualifications and
appropriate staff to patient ratios required to support individuals with BPSD.
Respite care in regional and remote
The challenges of providing health care to rural and remote areas are
well known. These include a lack of suitably qualified healthcare
professionals, fewer healthcare and community facilities, and greater travel
The National Rural Health Alliance argued:
Respite care is especially important—but more difficult to
achieve—for clients and their carers who live in rural and remote communities
where isolation and distances increase the challenges they face day-to-day.
Similarly, SARRAH argued:
There needs to be options for flexible respite and
residential care in rural and regional areas to overcome access barriers
created by distance and isolation. The provision of respite for 'time out' for
carers enhances their ability to cope with in-home care over longer periods.
SARRAH went on to suggest that respite could take many forms depending
on local circumstances and needs, including in-home care, mobile services, or
day centres or clubs based on a person's interests.
Based on the evidence received by the committee, there appears to be a
clear shortage of BPSD appropriate respite facilities. These facilities and
services are necessarily more expensive to provide, requiring higher staff-to-patient
ratios, highly trained staff and appropriately designed facilities. Given the
crucial role BPSD appears to play in deciding to place someone in residential
care however, the committee considers providing appropriate respite to allow
people to stay in the community is a sound investment of public money.
As discussed in this chapter, there are significant economic and social gains
from enhancing community care supports for dementia suffers and their carers.
The aged-care sector could not cope if all of those with dementia currently
receiving care in the community—many of whom would be in residential care were
it not for the efforts of their carers— needed to be treated in the more
expensive residential aged-care system. There is a strong incentive for the
Commonwealth to ensure that the supports necessary for people with BPSD to
remain in the community are available.
The committee recommends that the Commonwealth facilitate and
potentially fund the establishment of dementia-specific respite facilities,
including in regional and remote areas.
The committee recommends that the Commonwealth, in consultation with
industry, develop guidelines regarding dementia-specific respite facilities
that can effectively manage BPSD.
The committee recommends that the Commonwealth explore options for
improving the provision of respite in rural and remote areas.
Providing the necessary assistance to help people stay in the community
as long as possible yields personal health benefits to the person with
dementia, allows families and communities to remain together, and reduces the
demands on the residential aged care system. To this end, there are a number of
supports available to people with dementia and their carers.
Carers form a particularly important component of the care system,
undertaking much of the work that is necessary to ensure the ongoing quality of
life for people with dementia. Carers can be further supported in several key
The provision of training regarding support of people with
Improved access to support services and assistance in utilising
those services; and
The availability of dementia-friendly respite care.
As noted earlier in this report, dementia is a progressive disease with
no known cure. At some point, due to the progression of dementia, most people will
need dedicated dementia care that cannot be provided in the community and must
be transferred to residential care.
Residential care and its related issues is the topic for the next chapter of
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