Chapter 2 Dementia in Australia – demographics and services
2.1
This chapter offers key data on the prevalence of dementia in
Australia. It is not a comprehensive account, but simply provides sufficient
context to enable consideration of matters raised in later chapters.
2.2
The chapter also presents an overview of core government supports
and services available to people living with dementia, their families and
carers. The chapter concludes by acknowledging the contribution by the
non-government sector.
2.3
The chapter draws on a range of the available literature, which
is vast. Readers interested in a more thorough account should look to the Australian
Institute Health Welfare’s 2012 publication Dementia in Australia which provides
a much more comprehensive review of dementia demographics and the delivery of dementia
care services.[1]
Impact of dementia
2.4
Dementia is a leading cause of death in Australia. In 2010 (the
most recent year for which the data is available) it was the third most common
cause of death (after ischaemic heart disease and cerebrovascular disease),
with an average of 25 people dying of it each day.[2]
This accounts for 6 per cent of all deaths.[3]
2.5
Noting the longer life expectancy of women compared to men, it
not surprising that data for 2010 indicates that twice as many women died from
dementia. The number of deaths directly due to dementia increased by an order
of magnitude: 2.4 times between 2001 and 2010. This was due in part to the
ageing of the population, but there were also changes in how dementia is
recorded on death certificates which may have increased the figures.[4]
2.6
Furthermore, it should be understood that people with dementia
also die of other illnesses. Dementia may compound any number of other
conditions; thus dementia was recorded as the underlying or an additional cause
of 14 per cent of deaths in 2010.[5]
2.7
Medical analysts also rely on a concept called ‘burden of
disease’. The Australian Institute of Health and Welfare (AIHW) states:
Estimates of burden of disease quantify the amount of healthy
life lost due to premature death and prolonged illness or disability. Estimates
for 2011 suggest that dementia was the fourth leading cause of overall burden
of disease, and the third leading cause of disability burden. For people aged
65 and over, dementia was the second leading cause of overall burden of disease
and the leading cause of disability burden, accounting for a sixth of the total
disability burden in older Australians.[6]
2.8
The severity of the condition varies. Dementia was classified as
‘mild’ in 163,900 people (55 per cent of people with dementia), ‘moderate’ in
89,400 people (30 per cent) and ‘severe’ in 44,700 (15 per cent).[7]
2.9
Dementia is also a leading cause of disability and dependency,
particularly among older people.[8]
2.10
Dementia has wide ranging implications for carers, families and
friends of people living with the condition. For these individuals dementia
imposes all manner of stresses and costs, including the cost of opportunities
foregone and careers, education or retirement neglected.
What is dementia?
2.11
Dementia is not a single condition. Rather it is an umbrella term
that encompasses a range of conditions that affect memory, thinking, behaviour
and ability to perform everyday activities.
2.12
Although dementia occurs more commonly in older people, contrary
to popular belief it is not an inevitable or ‘normal’ part of the ageing
process. Therefore it is often ignored, rather than viewed as a condition
requiring active attention. Furthermore, dementia is not limited to older
people. Dementia occurring in people under 65 years is referred to as Younger
Onset Dementia (YOD). In 2011, there were an estimated 23,900 Australians under
the age of 65 who had dementia, with men accounting for 53 per cent of those
diagnosed. Those under 65 represented 8 per cent of all people with dementia in
Australia.[9]
2.13
Dementia has been broadly described in the following testimony
from Alzheimer’s Australia (Victoria):
Dementia describes a collection of symptoms that are caused
by disorders affecting the brain. Dementia affects thinking, behaviour and the
ability to perform everyday tasks. Brain function is affected enough to
interfere with the person’s normal social or working life. Most people with
dementia are older, but not all older people get dementia and it is not a
normal part of ageing.[10]
2.14
Dr Fiona Bardenhagen defined dementia as:
… a term used to refer to an acquired impairment in memory
and cognition. Dementia can take many different forms, can arise from a number
of conditions, and while memory impairment is the most common feature, some
forms of dementia involve changes in behaviour and language rather than memory
in the early stages. As a result, there are a number of different diagnostic
criteria for dementia. Some are based on clinical features, and some are based
on pathology.[11]
2.15
There are over 100 illnesses and conditions that can result in
dementia.[12] The most common types of
dementia in Australia are:
n dementia in
Alzheimer’s disease, estimated to be responsible for around 50–70% of dementia
cases, involving abnormal plaques and tangles in the brain;
n vascular dementia
(formerly known as arteriosclerotic or multi-infarct dementia), resulting from
significant brain damage caused by cerebrovascular disease—onset may be sudden,
following a stroke, or gradual, following a number of mini-strokes or because
of small vessel disease;
n dementia with Lewy
bodies, in which abnormal brain cells (Lewy bodies) form in all parts of the
brain. Progress of the disease is more rapid than for dementia in Alzheimer’s
disease;
n frontotemporal
dementia (e.g. Pick’s disease), in which damage starts in the front part of the
brain, with personality and behavioural symptoms commonly occurring in the
early stages;
n mixed dementia, in
which features of more than one type of dementia are present. For example, many
people with dementia have features of both Alzheimer’s disease and vascular
dementia.[13]
2.16
There are also a number of less common types of dementia,
including (but not limited to):
n dementia in
Parkinson’s disease, resulting from the loss of the neurotransmitter, dopamine,
in the brain (dopamine is implicated in the control of voluntary
movements)—dementia is common in people with Parkinson’s but not everyone with
Parkinson’s develops dementia;
n alcohol-induced
dementia (e.g. Wernicke/Korsakoff syndrome), in which brain function
deterioration is associated with excess alcohol consumption, particularly in
conjunction with a diet low in Vitamin B1 (thiamine);
n drug-related
dementia, where neurological deficits result from substance abuse, such as
petrol sniffing;
n head injury dementia,
which involves brain damage resulting from head injuries;
n Huntington’s disease,
an inherited disorder of the central nervous system, which is characterised by
jerking or twisting movements of the body and is usually eventually accompanied
by dementia;
n other forms of
dementia such as that developing in the course of human immunodeficiency virus
(HIV), or Creutzfeldt-Jakob disease;
n reversible forms of
dementia, such as dementia from B12 deficiency or hypothyroidism, which,
although rare, are important to identify. [14]
2.17
Conditions causing dementia are typically progressive,
degenerative and irreversible.[15]
Signs and symptoms of dementia
2.18
The common characteristics of dementia involve impairment of
brain functions, including speech, memory, perception, personality and
cognitive skills. Onset is typically gradual, progressive (in that as the
condition develops, the patient deteriorates, and does not improve) and irreversible.[16]
2.19
In the early stages of dementia, individuals may experience
difficulty with familiar tasks such as shopping, driving or handling money. As
the disease progresses, more basic or core activities of daily living such as
self-care (e.g. eating, bathing, dressing, reading, using numbers) may be affected.
In some cases dementia results in the affected individual displaying
uncharacteristic behaviours (e.g. agitation, apathy or aggression). [17]
2.20
The specific cognitive, psychiatric and behavioural manifestations
of dementia may include:
n memory problems,
especially for recent events (long-term memory usually remains in the early
stages);
n communication
difficulties through problems with speech and understanding language;
n confusion, wandering,
getting lost;
n personality changes
and behaviour changes such as agitation, repetition, following; and
n depression,
delusions, apathy and withdrawal.[18]
2.21
For the majority of people with dementia, assistance will
eventually be required for activities such as making decisions, managing
relationships, coping with feelings or emotions, and undertaking cognitive or
emotional tasks.[19] As the condition
progresses, people with dementia become increasingly dependent on their care
providers in most or all areas of daily living. The AIHW reports that:
Among the older population, dementia is more likely than
other health conditions to be associated with a severe or profound limitation
in self-care, mobility or communication, to be a main disabling condition and
to be associated with multiple health conditions. [20]
Prevalence of dementia
2.22
In 2011, there were an estimated 298,000 people with dementia, of
whom 62 per cent were women and 70 per cent lived in the community. Among
Australians aged 65 and over, almost 1 in 10 (9 per cent) had dementia, and
among those aged 85 and over, 3 in 10 (30 per cent) had dementia. There were
also an estimated 23,900 Australians under the age of 65 with dementia.[21]
2.23
Old age is the greatest risk factor for dementia. After the age
of 65, the likelihood of being diagnosed with dementia doubles every five
years.[22] This is indicated by
dementia prevalence rates, in which dementia prevalence is relatively low until
the age of 70 years, after which prevalence rates increase exponentially.[23]
Besides age-related risk, dementia prevalence rates also suggest that females
are at greater risk of developing dementia than males, particularly at older
ages (Figure 2.1).[24]
Figure 2.1 Estimated number of people with dementia, by
age and sex, 2011
Source Australian
Institute of Health and Welfare (AIHW); Dementia in Australia, catalogue No. AGE
70, 2012, p. 15.
2.24
The most recent figures from the Australian Bureau of Statistics
(ABS) indicate that deaths due to dementia and Alzheimer's disease have more
than doubled in the period 2001 to 2010, rising from 2.2 per cent to 6.3 per
cent of all deaths.[25] Dementia and Alzheimer’s
disease are now the third leading cause of death overall. When assessed by
gender, dementia and Alzheimer’s disease are the third leading cause of death
amongst females, compared to sixth for males.[26]
2.25
The prevalence of dementia in Australia is projected to triple to
around 900,000 Australians by 2050 (Figure 2.2). The projected tripling will
coincide with a doubling of the population aged over 65 years. The largest
growth in prevalence is expected to occur in the decade leading up to 2020
which coincides with the ‘baby boomer’ generations moving into the older age
groups, which have a higher risk of dementia. By 2050, it is expected that women
will continue to account for around 60 per cent of people living with dementia.[27]
Figure 2.2 Estimated number of people with dementia, by
sex, 2005-2050
Source Australian
Institute of Health and Welfare (AIHW); Dementia in Australia, catalogue No.
AGE 70, 2012, p. 18.
2.26
Rates of dementia are higher for Indigenous people than other
Australians. In Indigenous communities of Australia, particularly in the
Northern Territory and Western Australia, the prevalence of dementia is at
least five times that of the general population. The rate of dementia is 26
times higher in the 45 to 69-year-old age group and about 20 times higher in
the 60 to 69-year-old age group.[28]
Data limitations
2.27
Whilst estimates of dementia prevalence can provide some
indication of the extent of the condition, there are limitations on how the
data is interpreted. For example, as the World Health Organization (WHO) has observed:
The way in which the diagnosis of dementia is defined and
applied may be among the most important sources of variability [amongst data].[29]
2.28
In relation to projections for the prevalence of dementia in
Australia, the AIHW cautions:
Changes in risk factors and in the prevention, management and
treatment of the condition may affect the accuracy of these estimates. For
example, improved medical and social care might increase prevalence by allowing
more people to survive longer with dementia …. The estimates are also sensitive
to deviations from projected changes in the age-sex structure or total size of
the projected populations. Therefore, these estimates (especially those further
into the future) should be interpreted with caution.[30]
2.29
With regard specifically to estimates of prevalence in Indigenous
communities, the AIHW states:
Due to the lack of national data on the prevalence of
dementia among Indigenous Australians, most information is drawn from a small
number of localised, largely community-based studies.[31]
Ageing Australia and demand for services
2.30
In 2010 the Productivity Commission published its report on Caring
For Older Australians. Key findings from the report relating to projected future
demands for aged care services include the following:
n The number of people
aged 85 and over is projected to more than quadruple (from 0.4 million to
1.8 million) between 2010 and 2050. This is expected to drive a major increase
in the demand for aged care services over the next 40 years.[32]
n The people demanding care
services will be increasingly diverse, with a relative rise in proportion of older
people who are culturally and linguistically diverse, Aboriginal and Torres
Strait Islander people and living in regional and rural areas.[33]
n There is already a growing
demand by consumers for higher quality services, as well as a growing demand for
control and choice, since many older people want to age in their own home, while
the relative availability of family and informal carers is expected to decline.
This decline is expected to add to the demand for residential aged care.[34]
n Developments in information
and assistive technology have the effect of enhancing the ability of people to
meet their own needs for longer.
n Adjusting policy
settings in areas such as the provision of alternatives to hospitalisation for frail
older people who do not have acute care needs is important.[35]
Dementia services and supports
2.31
The Australian health system is complex. Dementia services are
delivered within the well-established institutional and professional context of
the health care system, and the closely related aged care system. While these
systems are used by people with dementia, the systems deal with a diverse range
of morbidities and ageing in general.
2.32
Responsibility for funding and provision of services is shared
across all levels of government and the private sector. In broad terms, the
Australian Government sets national policy and contributes to health funding,
primarily through Medicare, the Pharmaceutical Benefits Scheme and Private
Health Insurance rebates. The Australian Government also funds some services
directly and provides payments to state and territory governments for the
delivery of other services.
2.33
State and territory governments are also responsible for the funding
and delivery of public health services through hospitals and a range of
community settings. Private sector involvement in primary care and the delivery
of community services also adds to the complexity.
Medicare and the Pharmaceutical Benefits Scheme
2.34
As noted above the Australian Government is responsible for two significant
national health subsidy schemes:
n Medicare; and
n the Pharmaceutical
Benefits Scheme (PBS).
2.35
Dementia-focussed medical services increasingly concentrate on
prevention. Medicare provides a new item for general practitioners, the 45–49
year old health check, which is available to all general practitioners whose
patients are identified as at risk for a chronic disease. This complements
Medicare items for comprehensive annual health assessments for those 75 years
of age and over (and for Indigenous Australians 55 years of age and over).[36]
2.36
Some patients with mild to moderate Alzheimer’s disease are
eligible for a six month supply of subsidised cholinesterase inhibitors (i.e. donepezil
hydrochloride, galantamine hydrobromide and rivastigmine hydrogentartrate) under
the PBS.[37] For access beyond six
months, there must be evidence of clinical improvement.[38]
Memantine hydrochloride is another dementia specific drug available under the
PBS for people with more severe Alzheimer’s.[39]
2.37
The anti-psychotic medication risperidone is also available under
the PBS for ‘behavioural disturbances characterised by psychotic symptoms and aggression
in patients with dementia where non-pharmacological methods have been
unsuccessful’.[40]
Primary care and acute care services
2.38
Primary care providers, most notably general practitioners, play
a key role in the initial identification and management of dementia. A survey
of carers for people with dementia suggests that over 80 per cent of GPs were
the first health professionals approached when the symptoms of dementia
emerged.[41] Recognising the vital
role for primary care providers, the 2012 Living Longer. Living Better. package
has provided additional support for educating and training primary health care
providers to diagnose dementia in a more timely manner.[42]
2.39
People with dementia are also over represented in the acute care
setting. Dementia was the principal diagnosis in 21 per cent of those aged over
75 years who were hospitalised. This figure increases to 36 per cent for people
aged over 85 years.[43] The Living Longer.
Living Better. package provides additional funding to improve hospital
services for people with dementia. Funding will be used to help staff in the
acute care setting to identify the signs of dementia and apply appropriate
protocol.[44]
Community aged care services
2.40
There are a number of community care services available to help older
people to manage daily activities and remain living in their own homes. Services
provided may be general or dementia specific.[45]
2.41
The Aged Care Assessment Program (ACAP) provides assessments of
older people to ensure that they access the most appropriate types of care to
meet their specific needs. Assessment is conducted by Aged Care Assessment
Teams (ACATs). As explained by the Australian Government Department of Health
and Ageing (DoHA):
The role of ACATs is to determine the overall care needs of
frail older people and to assist them to gain access to the most appropriate
types of care services. In doing this, ACATs comprehensively assess older
people taking account of the restorative, physical, medical, psychological,
cultural and social dimensions of their care needs.
This includes determining whether a person has dementia or
other cognitive conditions, or behavioural problems related to these or other
conditions and/or the presence of depression or delirium.[46]
2.42
The outcome of the ACAT assessment determines eligibility for a
range of government subsidised aged care services including:
n Home and Community
Care (HACC);
n Community Aged Care
Packages (CACPs);
n Extended Aged Care in
the Home packages (EACH);
n Extended Aged Care in
the Home Dementia packages (EACHD); and
n Access to Residential
Aged Care Facilities (RACF).
2.43
These services offer different levels of assistance ranging from
low-level care provided to people in their own homes through HACC or the CACP
program, to more intensive home-based care through the EACH and EACHD packages,
through to residential care in aged care facilities.
2.44
From 1 July 2013, subject to legislative reform, there will be
four levels of Home Care Packages, to allow a seamless continuum of care at
home and catering to the full spectrum of care needs. These reforms were
summarised by DoHA as follows:
n Level 1 – a new
package to support people with basic care needs;
n Level 2 – a package
to support people with low level care needs, similar to the existing CACP;
n Level 3 – a new
package to support people with intermediate care needs; and
n Level 4 – a package
to support people with high level care needs, similar to the existing EACH
package.
It will no longer be necessary to have a separate EACHD
level, as a new Dementia Supplement will be available to all consumers who meet
the eligibility criteria for the Dementia Supplement (across any of the four
levels of Home Care Packages).[47]
2.45
From July 2015, the Australian Government will establish the
national Commonwealth Home Support Program. The CHSP will combine under the one
program all the services currently providing basic home support, including the
HACC services for older people and services provided under the NRCP.[48]
2.46
Culturally appropriate aged care services are also available for
Indigenous Australians under the National Aboriginal and Torres
Strait Islander Flexible Aged Care Program.
2.47
Veterans, war widows and widowers can also access home assistance
through the Veterans’ Home Care program provided through the Department of
Veterans’ Affairs.[49]
Home and Community Care
2.48
The HACC program is the largest national community care program
providing support for frail older people in Australia. Since 2012 the
Australian Government has taken full funding, policy and operational
responsibility for HACC services for older people in all states and territories
(except Victoria and Western Australia).[50]
2.49
Commonwealth HACC services are available to:
n People aged 65 years
and over (or 50 and over for Aboriginal and Torres Strait Islander people) in
all states and territories (except Victoria and Western Australia);
n People who are at
risk of premature or inappropriate admission to long term residential care; and
n Carers of older
Australians eligible for services under the Commonwealth HACC Program.[51]
2.50
The range of services available under HACC include:
n Clinical care (e.g. nursing
care and allied health services);
n Domestic assistance
(e.g. cleaning, washing, shopping, food preparation);
n Personal care (e.g. bathing,
dressing, grooming and eating);
n Social support;
n Home maintenance and
modifications;
n Transport;
n Assessment, client
care coordination and case management;
n Counselling,
information and advocacy services;
n Centre-based day
care; and
n Support for carers
including respite services.[52]
Community Aged Care Packages
2.51
Community aged care packages (CACP) are designed to provide
flexible support which is tailored to individual needs. The CACPs target older
people living in the community with care needs equivalent to at least low-level
residential aged care. The types of services available through CACPs include:
n Help with personal
care;
n Meals;
n Domestic assistance;
and
n Transport.
2.52
Extended Aged Care at Home (EACH) packages target older people
living at home with care needs equivalent to high-level residential aged care.
EACH packages generally include qualified nursing input, particularly in the
design and ongoing management of the package. Services available through EACH include:
n Clinical care;
n Help with personal care;
n Meals;
n Domestic assistance;
n Assistance to access
leisure activities;
n Emotional support;
n Therapy services; and
n Home safety and
modification.[53]
2.53
Similar to the EACH packages, Extended Aged Care at Home Dementia
(EACHD) packages offer a range of services that are tailored specifically to
meet the needs of older Australians with behavioural concerns or psychological
symptoms associated with dementia. The criteria for obtaining a package
are that the applicant:
n Is experiencing
behaviours and psychological symptoms associated with dementia that is
significantly impacting upon their ability to live independently in the
community;
n Requires a high level
of residential care;
n Prefers to receive an
EACHD package; and
n Would be able to live
at home with the support of an EACHD package.[54]
2.54
The packages provide a range of services including:
n Clinical
care (e.g. nursing care and allied health services);
n Personal
care;
n Transport
to appointments;
n Social
support;
n Home
help; and
n Assistance
with oxygen and/or enteral feeding.[55]
2.55
A new Dementia Supplement of 10 per cent on top of
base level funding for home care packages is included under the Living
Longer. Living Better. package.[56]
2.56
Indigenous Australians may be able to access a
range of residential and community care services available through the National
Aboriginal and Torres Strait Islander Flexible Aged Care Program. The aim of
the program is provide quality, flexible and culturally appropriate aged care for
older Indigenous Australians. The Living Longer. Living Better. package
provides additional funding to support more aged care places
under this program.[57]
2.57
The Veterans' Home Care (VHC) program aims to assist veterans and
war widows and widowers who wish to continue living independently in their own
home and local community by providing low level home care services. The range
of services include:
n Domestic assistance;
n Personal care;
n Safety-related home and
garden maintenance; and
n Respite care for carers
who have responsibility for a person who requires ongoing care, attention or
support.[58]
Respite services
2.58
Support for families and carers is essential if people with
dementia are to be supported to live in their own homes for as long as possible.[59]
As outlined by the AIHW in its Dementia in Australia report:
Respite care offers support to older people and their carers
who may need a break or who require some extra care for a short period (such as
during, or while recovering from, illness). Care may be provided for a few
hours on a one-off or regular basis, for a couple of days or for a few weeks.
Respite can occur in a variety of settings, including homes, centres,
residential aged care services and other locations, with care provided by
volunteers and/or paid respite workers. Respite is especially important for
people caring for someone with dementia … the demands of the caring role may
involve the provision of substantial amounts of physical, psychological,
cognitive and social support, while behaviour changes may add to the complexity
of caring.[60]
2.59
The Australian Government funds the National Respite for Carers
Program (NRCP) which targets carers of four groups: frail older people, younger
people with disabilities, people with dementia, and people with dementia who
have ‘changed behaviours’.[61]
2.60
The program provides direct respite care in a number of settings,
including day respite in community settings, in the home and in respite ‘cottages’
(but not in residential aged care facilities). Indirect respite care, such as
domestic assistance, social support and personal care for the care recipient,
is also provided by the NRCP. An ACAT assessment is not required to access the
NRCP, but the program has assessment procedures focussing on the needs of the
carers and the people for whom they care.[62]
Residential aged care services
2.61
The Australian Government provides funds to support aged care
facilities for older Australians whose needs are such that they are no longer
able to remain in their own homes. Eligibility for publicly funded residential
care places is typically determined by an ACAT assessment.
2.62
Residential care varies in the type of accommodation and the level
of support for residents. It may be available on a permanent basis or simply
used for respite care as required. Typically, residential care in Australia is
described as either low level or high level care.
2.63
Low level care facilities may assist residents with the basic activities
of daily living such as dressing, eating and bathing, as well as support
services such as cleaning, laundry and meals. They may offer some allied health
services, such as physiotherapy. Nursing care can be given when required.
2.64
High level care provides people who need almost complete
assistance with most activities of daily living with 24 hour care, either by
registered nurses, or under the supervision of registered nurses. Nursing care
is combined with accommodation, support services, personal care services and
allied health services.[63]
2.65
Significant reforms to residential aged care are proposed under
the Living Longer. Living Better. package, including:
n More residential
facilities being built,
n Supporting the
viability of services in regional, rural and remote areas,
n Trialling Consumer
Directed Care in residential aged care,
n Strengthening means
testing for residential care by combining the current income and asset tests,
n Establishing a new
Aged Care Financing Authority, and
n Improving the Aged
Care Funding Instrument.[64]
Dementia Behaviour Management Advisory Services
2.66
The Dementia Behaviour Management Advisory Services (DBMAS)
initiative commenced in 2007. Its main purpose is to provide support to those who
provide care for people with dementia associated behavioural and psychological
problems. This is achieved by improving the dementia care capacity of care
workers, family carers and service providers. DBMAS services include:
n Assessment of the
person with dementia;
n Provision of clinical
support, information and advice;
n Care planning, case
conferences and short term case management;
n Mentoring and
clinical supervision; and
n Education and
training.[65]
2.67
Under the Living Longer. Living Better. package additional
funding has been provided to extend DBMAS into acute and primary care settings.[66]
National Dementia Support Program
2.68
The National Dementia Support Program (NDSP) was established in
2005 under the Dementia Initiative (Making Dementia a National Health
Priority) to provide and promote education programs, services and resources
that:
n Improve awareness and
understanding about dementia and the services available to people living with
dementia, their carers, families, service providers and health professionals;
and
n Increase the skills
and confidence of people living with dementia, their carers, families, health
professionals, volunteers and community contacts.[67]
State/territory governments and the non-government sector
2.69
As noted earlier in the chapter, funding and provision of
services for people living with dementia and their families/carers is shared
across all levels of government and the private sector.
2.70
While drawing on health and aged care funding from the Australian
Government, state and territory governments manage services delivered through
public hospitals and fund a range of community health services. In addition
many localised and community based services for dementia patients are delivered
directly by the state and territory governments, or by subcontracted non-government
agencies.
2.71
The contribution of non-government agencies to the aged care
sector, and to the provision of services for people with dementia and their
families is diverse. While some are focused on representation, support and advocacy
(e.g. Carers Australia and the Consumers Health Forum of Australia), others
deliver services directly those living with dementia or those caring for them (e.g.
Brotherhood of St Laurence and Baptcare), while yet others do both (Alzheimer's
Australia).
2.72
For example, organisations typically provide supports and
services for people with dementia and their families/carers, including:
n Advocacy;
n Information and
referral services;
n Counselling;
n Support groups;
n Recreational and
social activities;
n Education; and
n Care services, such
as respite and residential care.
2.73
It is beyond the scope of the report to provide a comprehensive
and detailed description of the full range of services and supports available. However,
while many non-government organisations rely heavily on funding from public
sources in order to provide these supports and services, it is equally the case
that without the valuable contribution of the private sector governments would
struggle to meet demand. The ensuing synthesis between the public and private
sectors can be complex, but administrators in both sectors work to ensure that
the system operates effectively.