Chapter 2
What is Dementia?
2.1
Many Australians have an intuitive understanding of what constitutes dementia,
sometimes derived from personal experience. The Department of Health and Ageing[1]
(Department) reported 'nearly 1.5 million Australians are affected by dementia
including the families and carers of people living with dementia'.[2]
The Australian Institute of Health and Welfare (AIHW) provides a useful
introduction to dementia:
Dementia is not a single specific condition. Rather, it is an
umbrella term that describes a syndrome associated with more than 100 different
conditions which are characterised by the impairment of brain functions,
including language, memory, perception, personality and cognitive skills.
Although the type and severity of symptoms and their pattern of development
varies with the type of dementia, it is usually of gradual onset, progressive
in nature and irreversible.
...
In the early stages of the condition, close family and
friends may notice symptoms such as memory loss and difficulties with finding
familiar words, but the casual observer may not notice any symptoms. In the
mid-stages, difficulties may be experienced with familiar tasks, such as
shopping, driving or handling money. In the latter stages, difficulties extend
to basic or core activities of daily living, such as self-care activities,
including eating, bathing and dressing.[3]
2.2
The causes of dementia remain poorly understood:
Dementia is not a natural part of ageing, although the great
majority of people with dementia are older people. Many diseases can cause
dementia, the most common being Alzheimer disease. Other common forms
include Vascular dementia, dementia with Lewy bodies, frontotemporal
dementia (including Pick disease) and mixed forms of dementia.[4]
2.3
Although the epidemiology is poorly understood, issues such as alcohol,
traumatic brain injury, the human immunodeficiency virus, multiple sclerosis
and a range of metabolic, infectious, neoplastic and autoimmune disorders have
been linked to younger onset dementia (YOD).[5]
Indigenous Australians are also more likely to present with dementia, as are
those with disabilities such as Down syndrome or Huntington's disease.[6]
2.4
The course of dementia is often characterised as occurring in three
stages:
-
mild or early-stage dementia;
-
moderate or middle-stage dementia; and
-
severe or late stage dementia.
2.5
The following table, reproduced from the AIHW's Dementia in Australia,
provides an overview of these stages:
|
Stage
|
Description
|
|
Mild or early
|
Deficits are evident in a number
of areas (such as memory and personal care)
but the person can still function with
minimal assistance.
Symptoms include: moderate memory loss especially for recent events, some
disorientation in time, moderate difficulties with
problem solving,
reduced interest in
hobbies, and the need
for prompting
regarding personal
care tasks.
|
|
Moderate
or middle
|
Deficits become more obvious and severe, and increasing
levels of assistance are
required to help the person maintain their functioning in
the home and community.
Symptoms include: severe memory loss, considerable difficulty
orienting to time
and place, obvious
difficulties in finding words, severe impairment of judgement and problem solving, need for
assistance with
personal care tasks, and emergence of behavioural difficulties (for example, wandering, aggression, sleep disturbance
and disinhibited behaviour).
|
|
Severe
or late
|
Characterised
by almost total dependence
on the care and
supervision by others.
Symptoms
include: very severe memory loss, very limited
language skills,
unable to make judgements or
solve problems, regularly not recognising
familiar
people, frequent
incontinence, requires substantial assistance with
personal care, and increased behavioural difficulties.
By
this stage
the majority of people with dementia
are in residential care.
|
Sources: Draper 2011; Morris 1993.[7]
2.6
It is important to remember that there are crossovers between the stages
and progress through each stage is not always easy to define. The stages merely
provide a useful framework for discussions.
2.7
The American Psychiatric Association's Diagnostic and Statistical
Manual 5 (DSM-5) reclassified dementia as major Neurocognitive
Disorder.[8]
Some forms of dementia may also fall under a new category called mild
Neurocognitive Disorder. The DSM-5 does not preclude the use of the term
dementia from use in the etiological sub-types where that form is standard. Due
to the terminology used in the evidence, this report will use the term
dementia.
Behavioural and Psychological
Symptoms of Dementia
2.8
Behavioural and Psychological Symptoms of Dementia (BPSD) is defined as:
Symptoms of disturbed perception, thought content, mood or
behaviour that frequently occurs in patients with dementia. These include
aggression, apathy, anxiety, agitation, psychotic symptoms, depression,
disinhibited behaviours, wandering, nocturnal disruption and vocally disruptive
behaviours.[9]
2.9
BPSD is common in people with dementia and may occur for many reasons
other than direct changes in the brain from dementia: these include having
important unmet needs; physical or mental distress or illness; or reactions to
medications and factors in their environment.[10]
2.10
The effects of dementia on a person not only impede memory, but also
have significant effects on perception. Ensuring that care environments are
appropriate for people with dementia is an important step toward improving the
care of people with dementia in residential and community care. These concerns
are covered more fully in chapters 3 and 4 of this report.
2.11
The committee heard that symptoms widely described as BPSD are attempts
by a person with dementia to communicate that their needs are not being met.
These behaviours can be perceived as disruptive when they are not
understood.[11]
Although dementia does physically alter the brain, BPSD is reportedly rarely
'caused' by these changes. As BlueCare informed the committee:
While BlueCare acknowledges that changes in the brain forms
part of the disease, it understands that many behaviours occur because
individual needs are not being met and sometimes that the only way that a
person can communicate these needs is by behaving in a way perceived by others
as concerning or challenging.[12]
2.12
Dementia Care Australia similarly noted that BPSD is often an expression
of unmet need that may include physical needs (eg. pain or discomfort), social
needs (eg. loneliness), and environmental needs (eg. the need for quiet).[13]
As an expression of an unmet need, the behaviours will only escalate if the
reason they started is not addressed:
In many cases the behavioural symptoms are exacerbated if the
support provided to them does not adequately respond to someone's needs or to
the issues that lead to the person using the behaviour in the first instance.[14]
2.13
Evidence from the Minister's Dementia Advisory Council provides a useful
glimpse into what can cause BPSD, and some suggestions for its management:
The example I find that always works is to imagine yourself
at home on your sofa, in your living room, near your backdoor and the garden. You
have been dozing or daydreaming or whatever and then you come to. There is a
noise at the door. You turn around and, because the light is not very good, you
can only see the silhouette of a person carrying something. You sort of look
and then you see that your best friend, who has been away, has come to your
door, with a bunch of flowers. Your behaviour is going to be correlated to how
you interpret what you see. If you turn around and see a stranger carrying a
big stick or a knife then your behaviour is going to be perfectly and reasonably
correlated to what you think you see.
When there is damage to your brain processing, how you interpret
what you see is also going to affect how you respond. If it is your best friend
with flowers and you pick up something and throw it at them or push them away
because you think they are a stranger with a knife, you are going to be seen as
a bit mad. But if your cognitive processing has been damaged and that is
literally what you have seen, your behaviour is in perfect correlation to what
you have seen. A lot of what we see in the detailed training of people working
with those with dementia is their learning how to read that person's body
language, mood and emotion so that their approach is correlated to how that
person is feeling. Are they feeling threatened or not? If that person's
experience is one of being demeaned and bossed around then they are going to
get a bit stroppy. If they are being demeaned and their autonomy is being limited,
they might feel a bit stroppy and verbalise it, and so they are further
demonised for being stroppy. Or is it really that people have not understood
that, with a respectful approach which gives a person extra time to interpret
what is happening around them physically, that person is going to be perfectly
okay.
So it really is a correlation between the fact that there is
real organic damage to a person's brain and how they interact with the
environment and other stimulus which surrounds them. This is why I would assert
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 sometimes totally.[15]
2.14
This interaction between a person with dementia's environment, their
perceptions and resultant actions is a key consideration in determining how the
disease should best be managed. Chapters 3 and 4 highlight the importance of
design in minimising BPSD by recognising how perception may be altered by
dementia.
2.15
It is estimated that 56% to 90% of people with dementia will experience
BPSD at some stage, with the most common symptoms being apathy, depression and
anxiety. About 50% of people with dementia will have at least four symptoms
simultaneously.[16]
BPSD is not a rare condition: the Royal Australian and New Zealand College of
Psychiatrists (RANZCP) estimated the prevalence of BPSD at:
-
61–88% among people with dementia in a community setting;
-
29–90% in residents in Australian nursing homes; and
-
95% among hospitalised patients in long-term acute care.[17]
2.16
The relationship between BPSD and the progression of dementia is non‑linear.
In other words, a person with dementia will not necessarily experience more
BPSD as the disease progresses. BPSD can occur at any stage of dementia. [18]
The prevalence rates of BPSD are greatest in the middle stages of the disease,
when people are still mobile and may retain much of their physical strength.[19]
2.17
The incidence, treatment and manifestations of BPSD are often different between
community and residential care for various reasons. The management of severe
BPSD is predominantly a concern for residential care, as once people with
dementia begin exhibiting severe BPSD it is difficult to provide care in the
community and they are admitted into residential care. As noted by the RANZCP):
The occurrence of BPSD in people with dementia is the major
clinical factor that causes stress in carers and often leads to the breakdown
of community care and institutionalisation.[20]
2.18
BPSD and its management are discussed at greater length in Chapters 4
and 5 of this report.
Dementia in Australia
[T]he number of people with dementia are rising in every
single electorate, in every state and territory across Australia. As the
population ages, we must all be prepared for a radical shift in health
priorities.
– Ita Buttrose AO, OBE[21]
2.19
As the words of Alzheimer's Australia's National President Ita Buttrose
indicate, the growing number of people with dementia in Australia is one of our
most pressing public health issues. In August 2012, all Australian Health
Ministers recognised dementia as the ninth National Health Priority Area
(NHPA).[22]
As explained by the AIHW:
The [NHPAs] are diseases and conditions that Australian
governments have chosen for focused attention because they contribute
significantly to the burden of illness and injury in the Australian
community...By targeting specific areas that impose high social and financial
costs on Australia society, collaborative action can achieve significant and
cost-effective advances in improving the health status of Australians. The
diseases and conditions targeted under the NHPA initiative were chosen because
through appropriate and focused attention on them, significant gains in the
health of Australia's population can be achieved.[23]
2.20
Recognising dementia as a NHPA accords it the status of a chronic
disease and as equally important as other national health priorities, such as
cancer, diabetes, obesity and heart disease. NHPA status also indicates that
more can be done to deliver cost-effective improvements in the health of
Australians generally and those living with dementia in particular. It is this
aim to which this report seeks to contribute.
2.21
The inclusion of dementia as a NHPA comes as no surprise when some key
statistics are considered. In Australia, the best estimates indicate almost 300,000 people
are currently living with dementia, 70% of whom live in the community.[24]
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
one-sixth of the total disability burden in older Australians.[25]
2.22
The number of Australians living with dementia is projected to rise to
about 900,000 in 2050 as the population ages.[26]
Dementia prevalence rates are relatively low until the age of 70 years and over
when the prevalence rates start to increase exponentially.[27]
After the age of 65 the probability of receiving a diagnosis of dementia
doubles every five to six years.[28]
There is likely to be little change in this pattern, with the AIHW reporting:
There are no definitive protective factors for dementia
although many factors thought to probably protect against developing dementia
have been identified. These include better cardiovascular health, maintaining a
physically, socially and cognitively active lifestyle throughout middle age,
and higher levels of education. There are numerous other possible protective
factors for which evidence is less conclusive, including intake of omega-3
fatty acids, the use of cholesterol-lowering medications, non-steroidal
anti-inflammatory medications and aspirin.[29]
2.23
In 2011, one-in-ten Australians over 65 had dementia, a figure
increasing to three-in-ten for those aged 85 or over.[30]
The number of women with dementia outnumbers men, accounting for more of the
projected disease burden (63% compared to 37%).[31]
These figures should be used with caution however as Australia relies on
international prevalence studies to estimate the size of the problem in
Australia. There is also limited data on dementia within the indigenous
and culturally and linguistically diverse communities.[32]
2.24
The economic costs of dementia are significant, as is the burden it
places on healthcare infrastructure. Over 50% of permanent residents in
Commonwealth-funded aged care facilities have a diagnosis of dementia, and
these residents are more likely to require high care (87% compared to 63% of
residents without dementia).[33]
The average cost of hospital care for people with dementia was $2,500 more per
episode than those without dementia.[34]
Research published by the AIHW found that the total direct health and aged care
system expenditure on people with dementia was at least $4.9 billion in
2009–10.[35]
2.25
Although dementia is often seen as a disease of the elderly, an
estimated 23,900 Australians under the aged of 65 suffer from YOD.[36]
YOD typically refers to the onset of dementia before the age of 65. The World
Health Organisation (WHO) has estimated that YOD accounts for around 6% to 9% of
dementia cases. The Australian figure, at around 8%, is in line with this
estimate.[37]
2.26
Over the course of the illness, people with dementia need access to a
range of health care and social services including General Practitioners (GPs),
community services, allied health services, hospital, day and respite care,
in-home care and residential care.[38]
Diagnosing dementia
2.27
Dementia is a progressive illness that presents in different ways in
different people. An accurate diagnosis of dementia is important for sufferers
of the disease to enable them to access appropriate care and delay admission to
residential care.[39]
The Australian Psychological Society (APS) emphasised:
Early diagnosis and intervention has been demonstrated to
reduce the need for residential care placement and to keep people with dementia
living in the community for longer.[40]
2.28
GPs, in their role as frontline health providers, are often the first to
diagnose dementia in their patients. As might be expected, accurately and
correctly diagnosing a person with dementia is not simple due to a number of
issues. The committee was given some insight into this problem:
Moving...onto the assessment of dementia, as you are no doubt
well aware, it is complex. There is no simple blood test. You might have heard
of common simple screening tests like the [General Practitioner assessment of
Cognition] or the mini-mental state examination. They work reasonably well in
secondary care, where there is a higher prevalence of dementia.[41]
2.29
Highlighting the difficulty of diagnosing dementia, the Australian
Medical Association also noted that a diagnosis of dementia can only be confirmed
post‑mortem.[42]
2.30
The committee also heard that many people are reluctant to discuss
dementia with their GP or other health professionals. This poses additional
challenges in diagnosing dementia as GPs often rely on history provided by the
family or carer about impaired cognition and functioning in everyday life.[43]
In some communities, there is a particular reluctance to discuss dementia:
In rural areas, I have heard it said that the issue 'will be
dealt with on the farm' or 'in the family' and that people who have dementia
have been withdrawn from community events...to save embarrassment and shame.[44]
2.31
The committee similarly heard of the importance of carer and family
input to form a diagnosis, and the difficulties there can be in obtaining that
information:
As you are no doubt aware, a full assessment requires input
from carers...We are allowed to talk to a carer with the person there, but the
carer may not want to tell us the full extent of that person's disability in
front of them...Without that carer input it is very, very difficult for GPs to
assess the full extent of a behaviour of concern. Most of the ways of assessing
behaviours of concern like the antecedent behaviour consequence—the ABC—all
really need an external person to say: 'This is what was happening. That is
what upset mum and then she reacted in this way. And that was a consequence'.[45]
2.32
As indicated above, it is crucial that a diagnosis of dementia is accurate.
The committee heard concerns from the Royal Australian College of General
Practitioners (RACGP) that the current Medicare funding model does not lend
itself to accurate diagnoses of illnesses such as dementia:
The system issue I would like to flag is that in general
practice there is a tension, I believe, between the numbers of patients that
GPs are expected to see and the time that the GP can spend with each patient.
Time is of the essence when we are looking at behaviours of concern in people
with dementia or in any assessment of cognitive impairment.[46]
2.33
In addition to time constraints, the committee heard that the omission
of a Medicare item number for consulting with carers does not encourage GPs to
properly explore pertinent information in forming a diagnosis:
GPs tend to take the fact that there is no Medicare item
number for talking to a carer as an indication that this activity is not
encouraged – it is perhaps a breach of confidentiality or an undesirable thing
to talk to family members about the person you are caring for. So they feel
very anxious about that.[47]
2.34
It was emphasised to the committee that the families and carers of older
persons who may be suffering from dementia needed to be included in making
assessments of whether a person does or does not have dementia, and that more
needs to be done to encourage this process.[48]
2.35
The APS stressed the need for expert knowledge to evaluate dementia
diagnoses.[49]
Professor Dimity Pond emphasized that the limitations in GPs diagnosing
dementia were not a result of a lack of ability, but the constraints of the
system based around relatively short consultations.[50]
The Australian Medical Association (AMA) noted that 'it is very difficult to
achieve [accurate diagnosis] within the current constructs of Medicare items
which do not support prolonged assessments or interaction with family and carers'.[51]
The committee heard that there presently was no mechanism for a GP to refer a person
to psychological experts for assessment under Medicare.[52]
2.36
The Services for Australian Rural and Remote Allied Health gave evidence
that in remote communities there are very few people diagnosed with dementia,
particularly among Indigenous populations, despite the fact that research has
indicated that the prevalence of dementia in Aboriginal communities is more
than five times that of the non-Aboriginal population.[53]
This would indicate that there is a significant under-diagnosis and associated
treatment in those communities.
2.37
The lack of accurate and timely diagnosis can result in years of delay
in the person with dementia and their carers receiving adequate social and health
supports.[54]
The AMA similarly emphasised '[a] specific diagnosis of dementia is important,
because it can have implications for families and support networks...Early access
to services delivers better outcomes to patients and their families and carers'.[55]
2.38
The other face of the diagnosis coin is the potential to over diagnose
dementia in older people. Professor Pond noted that other factors may
present as dementia:
But in primary care [the mini-mental state and General Practitioner
assessment of Cognition] are both insensitive to dementia and also run the risk
of over diagnosing it when people for varied reasons to do with their
background, education, literacy, ability to speak English or perhaps
concomitant depression or because they are not well that day fail that test. It is
very important that we do not rush into labelling them as having dementia,
because it carries with it stigma and the potential loss of autonomy for that
person, which is a very, very serious thing.[56]
2.39
The committee heard that the risk of misdiagnosis could be reduced
through the acquisition of a strong patient history through family and carers,
as well as improving the awareness of differential diagnosis techniques among
medical professionals. Differential diagnosis considers alternative reasons
that might explain dementia like symptoms, such as side effects from
medication.[57]
2.40
The committee heard evidence that there remains a stigma associated with
dementia that can create barriers to community engagement.[58]
The Brotherhood of St Laurence reported:
There is a stigma around dementia...We get many carers coming
to us very distraught because the family member they are caring for has been
told they can no longer access a certain [activity]...It is very distressing for
those people who have been excluded and for their carers. It is hard enough to
be diagnosed with dementia, let alone to then be excluded from a club.[59]
2.41
Further, the use of certain terminology such as 'memory loss' and 'BPSD'
was reported to the committee as creating a stigma that detracted from a focus
on the person and centred attention on the disease.[60]
Ms Pieters-Hawke from the Minister's Dementia Advisory Group lamented:
Essentially we are living with a view of [who] a person with
dementia [is] that really has not crept out from the shadows of the mediaeval
demonisation of people with mental and behavioural differences.[61]
Recommendation 1
2.42
The committee recommends that the Commonwealth create a new
Medicare item number that encourages General Practitioners, registered
psychologists or other relevant accredited professionals, to undertake longer
consultations with a patient and at least one family member or carer where the
patient has presented with indications of dementia.
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