By continuing to insist that
what was happening inside my brain was definitely not usual I was diagnosed
while still at a relatively early stage and therefore I have been able to have
my say about our lifestyle decisions. But had the diagnosis been in 2006 when I
first became aware of changes I would have had much greater capacity to make
decisions and therefore more choices from which to make them…
… I would have retained my
identity and continued to be financially independent.[1]
Chapter 4 Diagnosis
4.1
‘Early’ or ‘timely’ diagnosis of dementia can have significant benefits
for a person with dementia, their families and carers.
4.2
These benefits are far-reaching and can include:
n The ability to plan
early and prepare for the future; and
n The ability to obtain
a diagnosis and appropriate treatment early.[2]
4.3
In addition, having timely access to appropriate medical treatment for
dementia may improve cognitive function, prolong independent living, reduce
carer burden and improve quality of life.[3]
4.4
Despite the obvious benefits to early or timely diagnosis, the Committee
heard that as many as two-thirds of people with dementia live and die with the
condition without ever being diagnosed. Those people who do receive a diagnosis
wait an average of approximately three years from first symptoms to diagnosis.[4]
4.5
The Committee was told that primary care practitioners, such as General
Practitioners, have a major role in improving early diagnosis. Consequently,
there is a need to improve early or timely diagnosis by General Practitioners
and other primary care practitioners.
4.6
Cognitive Dementia and Memory Services (CDAMS) told the Committee that
ensuring timely diagnosis requires a multi-faceted approach:
Ensuring availability of timely diagnosis and advice will
require a multi-pronged approach including education and up‐skilling of GP’s,
practice nurses, and service providers, provision of specialist services to
provide assistance and advice particularly in more complex presentations, along
with increased community awareness of dementia and the benefits of early
diagnosis.[5]
4.7
The concepts of early and timely diagnosis, the benefits to achieving a
timely diagnosis, and how a timely diagnosis might be obtained, are discussed
below. The barriers to achieving early and timely diagnosis are discussed in
Chapter 5.
4.8
The need to increase community awareness about the benefits of early
diagnosis is discussed in detail in Chapter 3.
What is
‘early’ or ‘timely’ diagnosis?
4.9
The optimal time for a person to receive a diagnosis of dementia was the
subject of some discussion during the inquiry. The Committee has considered the
difference between the concepts of ‘early’ and ‘timely’ diagnosis in the
context of this discussion.
4.10
Minister Butler’s Dementia Advisory Group (MDAG) distinguished ‘timely’
diagnosis from ‘early’ diagnosis:
For example a person with undiagnosed moderately advanced
dementia first coming to medical attention on admission to hospital should
receive a diagnosis; this would be timely though not early. Early diagnosis
refers to reducing the gap from first symptoms to receiving a diagnosis.[6]
4.11
Alzheimer’s Australia National Office defined ‘early diagnosis’ as ‘a
diagnosis as soon as possible after symptoms are brought to the attention of
the health care system.’ Defined in this way, Alzheimer’s Australia considered
that ‘early’ diagnosis was in fact similar to ‘timely’ diagnosis.[7]
4.12
Alzheimer’s Australia Victoria believed that a ‘timely’ diagnosis
coincided with action being taken at the point that concern was expressed, and
the timely provision of advice, treatment and support services.[8]
4.13
In this regard, it was submitted that a ‘timely’ diagnosis was
preferable to an ‘early’ diagnosis:
Health professionals involved in diagnosing dementia must be
careful to balance, and be sensitive to, the perceived and potential positive
and negative effects of a dementia diagnosis. The RACP (Royal Australasian
College of Physicians) and the ANZSGM (Australian and New Zealand Society for
Geriatric Medicine) support a person-centred approach to diagnosis that
responds to the person with dementia and their carers’ needs and preferences.
Often timely diagnosis will be more appropriate than early diagnosis.[9]
4.14
While acknowledging the potential benefits of an ‘early’ diagnosis, the Royal
District Nursing Services Ltd (RDNS) considered that for interventions to be
successful, the person with dementia, along with their family and friends, had
to be ready to seek information, diagnosis, and treatment. RDNS stated, ‘This
readiness will come at different times for different people but when it does
expeditious and timely assessment is then critical.’[10]
4.15
MDAG explained the factors a practitioner was required to balance in
making a diagnosis:
The advantages of a diagnosis are that it can be a relief
(paradoxically) and trigger support, medications and planning ahead. On the
other hand it is important to respect peoples’ preferences not to know and
acknowledge possible distress. The clinician’s skill is to navigate these
issues sensitively.[11]
4.16
Dr Owen Davies, of the South Australia Division of the Australian and
New Zealand Society for Geriatric Medicine (ANZSGM), considered the ideal point
at which to make a diagnosis of dementia:
My view is that we should be making a diagnosis at the point
where someone is struggling to manage to live a day-to-day life at home or they
are just beginning to develop those problems.[12]
Committee
comment
4.17
This inquiry focusses on how an ‘early’ diagnosis of dementia might improve
a person’s quality of life, as well as the lives of their family and carers. In
hearing evidence about the benefits of receiving a ‘timely’ diagnosis, the
Committee considers that ‘early’ diagnosis in the context of this report has
the same meaning as ‘timely’ diagnosis.
4.18
‘Early diagnosis’ sometimes includes reference to a diagnosis of
pre-symptomatic Alzheimer’s disease or other causes of dementia using
biomarkers (biological rather than symptomatic indications of disease presence).
The Committee was told that preclinical diagnosis is currently confined to
research settings.[13]
4.19
The Committee heard that the time of readiness to receive a diagnosis
varies from person to person. A General Practitioner or other medical
professional must consider their patient’s readiness with a number of other
factors, such as the risk of damaging the patient-doctor relationship, and the need
to commence beneficial treatment or interventions.
4.20
The Committee accepts that in the majority of cases, the appropriate and
timely point for a person to receive a diagnosis of dementia is when they are
experiencing symptoms which begin to impact upon their everyday lives.
4.21
It is clear that there is currently an unacceptable delay between when a
person first displays symptoms of dementia, and when they receive a diagnosis
(if they receive a diagnosis at all). These delays, along with the barriers
which contribute to a delay or failure to receive a diagnosis, are discussed in
Chapter 5.
4.22
How a diagnosis is obtained, as well as the benefits to achieving a
‘timely’ diagnosis, are discussed further below.
Benefits of
timely diagnosis
4.23
The Committee was told that the benefits to receiving an early diagnosis
were three-fold:
n It gives a person the
power to control their life and plan for their future, including organising
enduring powers-of-attorney and discussing advance care directives;
n It empowers the
person with dementia, their carer and their family to accept the diagnosis and
reach a better understanding about the person’s condition; and
n Treatment, services
and support are usually built around a diagnosis, so achieving an early
diagnosis provides a person with access to dementia care services.[14]
4.24
The Committee acknowledges the significant challenges faced by families
of people who receive a diagnosis of dementia. It follows that the benefits of
timely diagnosis will extend to families, so that they can also access the
range of available support services for carers.
4.25
Mrs Judy Ratajec, of Uniting Church Frontier Services, told the
Committee that appropriate and timely diagnosis should be promoted:
The benefits of that timely and appropriate diagnosis would
obviously be around being able to rule out any other cause for the symptoms
that are presenting, to look at treating other risk factors, to look at linking
the family and/or the carers into support systems so that they actually have
that support system to go with them through the journey…
… The earlier a person is diagnosed the more able they are to
actually look at self-determining for the journey, so empowering them through
the decision-making.[15]
4.26
The Australian General Practice Network (AGPN) submitted there were a
number of potential clinical benefits associated with timely diagnosis of
dementia, including the opportunity to:
n treat the reversible
causes of dementia
n help slow the
progression of dementia through pharmaceutical and lifestyle interventions
n support symptom
management through pharmaceutical and lifestyle interventions (many of which
are likely to be more effective earlier in the course of disease progression)
and minimise the impact of symptoms, for example through the establishment of
routines that can help patients and families manage declining cognitive
function.[16]
4.27
It was argued there was also a range of non-clinical benefits of timely
diagnosis and management of dementia, for both a person with dementia and their
family. These benefits included offering insight into the symptoms a person was
experiencing and a greater understanding of disease progression and what the
future may hold. The AGPN considered:
In this sense, timely diagnosis can provide an important
opportunity for the patient to experience a sense of self determination at a time
when it can feel that their self-agency is being eroded. [17]
4.28
Jill, who appeared in a private capacity, believed that an earlier
diagnosis for her husband may have assisted in easing his symptoms and allowing
her to take control of business decisions sooner:
There are medications that help slow it and the earlier they
get on them the more effective they are. He could have perhaps been on
medication. As I said in my opening speech, for a month or two he would not be
able to do anything and then he seemed to come all right and I would let him
take over again. Perhaps if I had realised that it was a real problem with his
brain, I would not have been allowing him to step in and out of the business.[18]
4.29
The benefits of early diagnosis could also be seen in the health and
aged care systems, as early diagnosis, effective treatment and support could
lead to a reduction in unnecessary hospitalisations and crisis interventions,
and delay a person’s entry into residential or hospital-based care. [19]
4.30
In addressing the inquiry’s terms of reference, MDAG noted the following
benefits to achieving a timely diagnosis:
n In improving the quality
of life and assisting people with dementia to remain independent for as long as
possible:
§
By reversing dementia if a reversible cause could be discovered;
§
By enhancing safety in workplace for those still working;
§
By monitoring and if necessary assessing driving so as to enhance
safety with driving;
§
By optimising management of other medical conditions;
§
By alerting the person, and his or her family, friends and doctor
to the need to assist the person psychologically;
§
By helping families and friends to understand changes in people
with dementia leading to better relationships and development of strategies to
compensate for cognitive deficits;
§
By receiving advice from health professionals such as
occupational therapists and from Alzheimer’s Australia (Living with Memory Loss
course) on strategies to compensate for memory loss; and
§
By enabling medications to be commenced earlier, which could help
someone stay independent for longer. [20]
n In increasing opportunities
for continued social engagement and community participation for people with
dementia and their carers:
§
By alerting others to make them more tolerant and supportive;
§
By structuring social engagements so as not to be overwhelming;
§
Through support groups for people with early dementia; and
§
By building on retained strengths of person with early dementia.[21]
n In helping people with
dementia and their carers plan for their futures:
§
Enabling planning for future life decisions, living arrangements,
proximity to services and family;
§
Alerting the person and the family to the need for financial
planning; and
§
Enabling affairs to be arranged in timely manner while person
with dementia still has legal mental capacity.[22]
How is a
diagnosis of dementia obtained?
4.31
In considering what barriers exist in achieving a diagnosis of dementia,
it is important to examine how a diagnosis of dementia is obtained in
Australia.
4.32
International guidelines recommend that an initial assessment of a
patient for dementia include obtaining a comprehensive medical history, undertaking
a physical examination and conducting necessary laboratory and imaging tests.[23]
4.33
The Australian Institute of Health and Welfare (AIHW) stated in its
report, Dementia in Australia, that there was no single definitive
diagnostic test:
There is no single or simple test that will definitively
diagnose dementia. The assessment process may vary according to who is
conducting it and the symptoms the person presents with. In general, the aim of
the assessment is to gather sufficient information about changed behaviours,
functional capacity, psychosocial issues and relevant medical conditions to
allow for a diagnosis to be made. Often, the information gathering process
includes input from third parties (for example, carers, family members and
service providers) and the use of screening tools.[24]
4.34
If the results from a screening test suggest cognitive impairment, it is
recommended that a person be referred to a medical specialist (such as a
geriatrician, psychiatrist or neurologist) for further assessment. On the
advice of the specialist, other tests, such as radiological and laboratory
investigations, may be undertaken.[25]
4.35
The strengths and weaknesses of screening tests for dementia are
outlined below.
Screening
tests
4.36
There are a number of screening tools available to medical practitioners
who are tasked with making a diagnosis of dementia. These tools include:
n The Mini-Mental State
Examination (MMSE);
n Modified Mini Mental
Exam (3MS);
n The General
Practitioner assessment of Cognition (GPCOG);
n The 7-Minute Screen;
n The Addenbrooke’s
Cognitive Examination – Revised (ACE-R);
n The Rowland Universal
Dementia Assessment Scale (RUDAS);
n The Montreal
Cognitive Assessment (MoCA);
n The CogState; and
n The Kimberly
Indigenous Cognitive Assessment Screen (KICA).[26]
4.37
A positive screen does not mean that a person has dementia. Rather, a
score below a threshold on a cognitive test merely indicates poor performance,
and a more detailed assessment is required before a diagnosis can be made.[27]
4.38
Professor Dimity Pond, a professor of General Practice, explained how
conducting screening tests was not an exact science:
Doing a mini mental state exam or even our GP cog exam on
everyone does not work because it is not an exact science. Those screening
tests can overdiagnose or underdiagnose people. You can do really well. I have
had people score 30 out of 30 and they cannot find their way out of my surgery.
They have dementia to the degree that they get lost every time they walk out of
my door and yet they score perfect scores. Then other people might score a 22
or 23 but they have been like that all the[ir] lives. They did not have a good
education. People in their 80s often did not get much beyond primary school.
Their literacy might not be that good. They do not spend a lot of time
listening to the news. They might be a bit stressed by the questions and they
just do not score well. It does not mean they have dementia. There is not an
easy way for GPs to make this diagnosis.[28]
4.39
The Australian Psychological Society (APS) submitted that competent use
of diagnostic instruments and valid interpretations of the results was crucial
in developing treatment plans that responded to a person's needs. For example:
It is recognised that people not trained in the
administration of the MMSE can inadvertently or unwittingly affect the results
and scoring of the test; thus increasing the chance of under- or over-estimating
the level of cognitive impairment, and in turn affecting treatment decisions…
… The implications of inaccurate or possibly erroneous
diagnosis of a person with dementia are vast and varied including prescription
of the wrong medication or, put simplistically, failure to treat. [29]
Screening
challenges
4.40
While the proportion of patients who are incorrectly diagnosed using the
most common diagnostic instruments is low, the Committee was told that the risk
is amplified for patients who are highly educated, speak English as a second
language and/or have a sensory impairment.[30]
4.41
Associate Professor Mark Yates, of MDAG, explained that the gaps in some
of the language-based screening tools were well recognised and therefore could
be addressed:
When you use these tools a lot, it is like anything else: if
you know the holes or if you know when the tool is not going to work, it is
often as useful as having a tool that works perfectly in every scenario because
you can use its gaps and you know its blind spots. So that is quite useful.
There are other tools we can use. There are validated equivalents to the Mini
Mental State Examination, such as the RUDAS, which has been validated in
Australia and has multiple language capability. That is what I would use in my
clinic if I had someone who was of a non-English-speaking background.[31]
4.42
Queensland Health stated the importance of recognising a variety of
validated tools such as the MMSE, the RUDAS and the KICA tool, to assist in the
diagnosis of people from a range of backgrounds.[32]
4.43
The Committee was told that the KICA screening tool had been introduced
in Alice Springs and surrounding desert communities, to assist in the diagnosis
of dementia in Indigenous Australians. However, it was recognised that the
application of KICA in Central Australia was in its preliminary stages and
training was necessary to achieve the full benefit of the testing.[33]
4.44
Ms Nina Bullock, of MacDonnell Shire Council (servicing remote
Indigenous communities outside of Alice Springs) told the Committee that the
context of the tool needed to be taken into account:
The KICA is a good example of an assessment tool that works
in its context. Its context is tropical north territory. In many ways it is a
good step forward but it is not the tool for us right now from the shire's
perspective.[34]
4.45
Mr Graham Kraak, of Queensland Health, said KICA had been trialled for
Indigenous communities in Queensland, but further evaluation of its
effectiveness was required:
Often the challenge with these is that it might work for one
particular community but it is not necessarily generalisable to all Indigenous
communities or to Torres Strait Islanders. Often they are grouped together, but
the cultural needs and the cultural nuances are very, very different across the
country—even within Queensland. [35]
4.46
Ms Cate Young, of Tangentyere Council, told the Committee that
inaccurate assumptions were often made during the assessment process for Indigenous
Australians, due to language barriers:
I have seen a Ngaanyatjarra woman having a dementia
assessment with the help of a Pitjantjatjara interpreter who thought she was a
bit mixed up because the Pitjantjatjara interpreter did not understand
Ngaanyatjarra. It was only because a Ngaanyatjarra person walked past and said,
'Oh, she is speaking Ngaanyatjarra,' that we actually realised that this lady
was not mixed up at all and the interpreter was mixed up. It is not just those
kinds of things but even some of the assessments. There are huge cultural
divides and language divides that are not well addressed.[36]
4.47
Ms Young also illustrated the cultural issues associated with obtaining
a diagnosis of dementia:
I have assessed a lady who, when you asked her that question
about how many animals can you name when going hunting, only named one. But
then her family told me later that she only named one because she is only
officially allowed to speak about one, not but because she could not name them.
There are lots of discrepancies and mixed up assessments that are being not
done well and not followed up well because of quite big cultural and language
divides. They leave hospital and then there is not that follow up. So there is
an opportunity missed. [37]
4.48
Mrs Stephanie Waters, of Kimberley Aged and Community Services, told the
Committee that language and distance barriers exacerbated difficulties in
achieving an accurate diagnosis. Mrs Waters outlined the methods used to assist
in diagnostic testing for dementia in Indigenous communities, such as the use
of interpreters:
Sometimes people will come in with a daughter or an escort, a
family member, so sometimes that will be one of the strategies used. We try to
use the Kimberley Interpreting Service. I guess getting awareness across all
the hospitals that that even exists is difficult with the high turnover of
doctor staff and nursing staff. A lot of them are not aware initially that that
service exists. And then there is the timeliness of having someone able to come
and interpret, especially in an acute setting, if someone is really unwell. But
it is a common occurrence. With all the many languages—and do not ask me how
many there are, but there are lots—an interpreter who can actually speak in
that language is not always available.[38]
4.49
Due to the cultural bias embedded in some of the screening tools, CDAMS
recommended that a best practice model for the assessment and diagnosis of
dementia for people from culturally and linguistically diverse (CALD) and Aboriginal
and Torres Strait Islander backgrounds be identified to assist in achieving a more
timely diagnosis.[39]
4.50
Dr Jennifer Torr submitted that diagnosis of dementia in people with
intellectual disabilities was a complex clinical challenge for a number of
reasons, including that standard assessment instruments were not valid for use
in this population. [40]
4.51
National Disability Services agreed that there were particular
challenges when assessing people with an intellectual disability for dementia:
While the diagnosis of dementia in someone with an
intellectual disability should follow the same process as for other people,
special challenges arise from the fact that people with intellectual disability
have pre-existing difficulties with tasks that involve thinking, remembering
and daily living skills. They, therefore, do not perform well on the standard
tests used for the general population.[41]
4.52
Dr Torr and CDAMS called for the identification of best practice
guidelines for assessing people with intellectual disabilities for dementia.[42]
4.53
MDAG recommended the promotion of the use of standardised cognitive
screening instruments, as have been evaluated by the Commonwealth funded
Dementia Outcomes Measurement Suite (DOMS).[43]
Committee
comment
4.54
The Committee notes there are a range of screening tools available to
medical practitioners to assist in making a diagnosis of dementia. It is clear
that the application of these tests is not an exact science, and at times this
testing can produce either a false diagnosis, or fail to diagnose someone who is
later found to have dementia. All screening tests and assessment processes have
their strengths, weaknesses, and limitations.
4.55
It is not the Committee’s intention to offer an exhaustive list of
available screening tools for dementia in this report, or to offer a judgement
on the effectiveness of each tool.
4.56
The Committee understands that best practice dictates that screening
tools be used as only one step of the assessment process. Ideally, a diagnosis
of dementia should be obtained through the results of a suitable screening
test, a GP’s clinical judgment, information gathered from the patient and/or
their families, and a referral to geriatricians or other specialists, if
required.
4.57
The Committee heard there are challenges associated with achieving an
accurate diagnosis in some population groups, such as people with an
intellectual disability, people from CALD backgrounds and Aboriginal and Torres
Strait Islander people, where English is a second language. Further, the
Committee heard standard cognitive testing is invalid for people with intellectual
disabilities.
4.58
Alternate tools have been developed which may be more useful for people
of CALD or Indigenous backgrounds. However, the Committee was told there is no
‘one size fits all’ screening test, and tests need to be adapted to suit a
particular community’s needs.
4.59
Cultural sensitivity and understanding, as well as flexibility in
assessment processes, is necessary when undertaking assessments for dementia
for people from CALD backgrounds, and Indigenous people for whom English is a
second language.
4.60
Where necessary, interpreters should be utilised to assist with the
screening process. Unfortunately, the Committee heard that finding an
appropriate interpreter to assist Indigenous communities is difficult, given
the range of languages spoken across different communities. Further, hospital
or medical staff members may not be alert to some of the language barriers and
the availability of interpreters to assist in the screening processes.
4.61
In its submission to the Committee, MDAG referred to the development of
the Dementia Outcomes Measurement Suite (DOMS), a project commissioned under
the Australian Government's National Dementia Initiative (administered through
the Department of Health and Ageing). The DOMS aims to develop a standard suite
of instruments to be circulated throughout Australia to encourage clinicians to
‘talk the same language’, by using the same instruments as much as possible.[44]
4.62
The Committee supports this project and encourages the dissemination of
standardised best practice guidelines for the assessment and diagnosis of
dementia, including separate guidelines for assessment of people from CALD backgrounds.
4.63
The Committee also notes the work of the National Aboriginal and Torres
Strait Islander Dementia Advisory Group (NATSIDAG) in consulting with Alzheimer's
Australia to develop principles to underpin best practice, to improve services
and support for Aboriginal and Torres Strait Islander communities. Presumably
this includes best practice principles for diagnosis.
4.64
It appears from the evidence that the diagnostic needs of people with
disabilities, particularly those with intellectual disabilities, have not yet
been considered in the development of best practice principles, as a population
group with special needs.
4.65
The Committee is of the view that the development of best practice
guidelines for diagnosis of dementia for people with an intellectual disability
should be prioritised.
Recommendation 3 |
|
4.66 |
The Australian Government, through
the Dementia Outcomes Measurement Suite, develop best practice guidelines for
diagnosis of people with intellectual disability. |
Targeted screening
for dementia?
4.67
Over the course of the inquiry, there were wide-ranging discussions regarding
whether targeted screening for dementia should be undertaken at an age when individuals
are most at risk of developing dementia.
4.68
Specifically, discussion canvassed whether cognitive screening should form
part of health assessments undertaken for people over 75 years of age, which
are free to patients through the Medicare Benefits Schedule (MBS).
4.69
A health assessment for people aged 75 and over (a ’75-plus health
assessment’) provided under the MBS involves an ‘assessment of a patient's
health and physical, psychological and social function for the purpose of
initiating preventive health care and/or medical interventions as appropriate’.[45]
The assessment may be undertaken once every 12 months, with a consultation time
of up to one hour, and must include:
n measurement of the
patient’s blood pressure, pulse rate and rhythm;
n an assessment of the
patient’s medication;
n an assessment of the
patient’s continence;
n an assessment of the
patient’s immunisation status for influenza, tetanus and pneumococcus;
n an assessment of the
patient’s physical function, including the patient's activities of daily
living, and whether or not the patient has had a fall in the last 3 months;
n an assessment of the
patient’s psychological function, including the patient's cognition and mood;
and
n an assessment of the
patient’s social function, including the availability and adequacy of paid and
unpaid help, and whether the patient is responsible for caring for another
person.[46]
4.70
Alzheimer’s Australia argued that the MBS be strengthened to emphasise
the assessment of cognitive issues, as well as for physical issues.[47]
4.71
The wider use of the MBS items by GPs is discussed further in Chapter 5,
in the context of considering the barriers for primary practitioners in making
a timely diagnosis.
4.72
Dr Robert Prowse, of ANZSGM, considered that 75 years of age was a
sensible point in time to screen people for dementia:
One of the problems with screening … is that we probably do
not want to screen people at 60 or 65, when the incidence is about one per cent
in the population. It goes up quite rapidly from there.
Perhaps 75-plus, we thought, would not be a bad time to do a
screen, because by then it is sufficiently common that you might be picking up
things. Of course, with a screening test you will still pick up all sorts of
things that we have already talked about—depression, sleep apnoea—but they in
themselves still need treatment. So, if someone has a cognitive problem that is
not just due to normal ageing, then that is the time at which making a
diagnosis might be helpful.[48]
4.73
Dr Lyndon Bauer, of Health Promotion Central Coast, was of the view that
targeted screening of people over 75 would likely lead to an increase in false
positive results:
… you will find that a surprisingly high number of patients,
if you randomly select them from your practice without them having any sort of
underlying problem, will come up positive. There are number of different
reasons why this might be: the stress around taking the test, their literacy
levels et cetera, and because the tests are not so good. Many of the tests have
weaknesses. If we then take that percentage of people—it is a large number;
let's say it is 35 per cent but I am only guessing—and put that pressure on them,
‘Gee, you've come up positive for dementia,’ that can be very damaging.[49]
4.74
Some individuals and organisations advocated for a ‘case-finding’
approach to diagnosis, triggered when a person presents to a doctor with
relevant symptoms, rather than a targeted approach where all individuals were
screened once they reached a certain age.
4.75
MDAG explained that while the ‘case-finding’ approach to diagnosis was
widely accepted, targeted screening was also recommended by many:
Targeted screening followed by more detailed assessment for
individuals at high risk of dementia is recommended by many, e.g. people over
75 in general practice, older people admitted to hospital. Case-finding is
recommended by all, i.e. once concerns or symptoms are voiced, comprehensive
assessment is mandatory.[50]
4.76
NSW Health favoured the case-finding approach and did not support targeted
screening:
NSW Health does not support population-level universal
dementia screening of older individuals as the sensitivity and specificity the
screening tools available would lead to many false positives, causing undue distress
and unnecessary follow-up assessment costs. Instead, a ‘case-finding approach’
is recommended where the General Practitioner acts on concerns raised or on
symptom presentation. [51]
4.77
An alternative model of targeted screening was to screen people over a
certain age when they were admitted to hospital. Associate Professor Yates explained:
Simple screening of the over 65 population in all hospitals (where
our estimates put the prevalence at 30%) using validated tools usable by
medical, nursing and allied health staff with simple education such as the
MMSE, AMTS or miniCOG would rapidly improve awareness of patients at risk.[52]
4.78
Ms Marianne Cummins, from the Australian Association of Gerontology
(AAG), told the Committee that in Alice Springs, for example, it would not be
appropriate to undertake mandatory screening of people admitted to hospital, as
this would likely lead to false diagnosis:
As a nurse working in the hospital we already have people, as
Cate said, that are identified as having dementia and are labelled with
dementia because of a whole range of things. They may be delirious and acutely
unwell. That is really the common cause. It is the most common cause of
people's confusion, and it is on top of their chronic illnesses. It is
well-known that if you have a chronic illness and you become acutely unwell
then you can become delirious. There are a lot of risk factors. Sometimes it is
actually about the hospital not then going down the track of making sure that
that acute illness is treated. That would be the most disastrous thing I think
because they have a lot of people that that is an issue for.[53]
Committee
comment
4.79
Currently, there are unacceptable delays in the average time taken for
an individual to receive a diagnosis of dementia. The Committee has considered
how the screening of dementia might contribute to these unacceptable delays,
and how this might be addressed.
4.80
The Committee heard conflicting evidence regarding whether targeted or
population-based screening of dementia was an appropriate means of improving
capacity to detect dementia early.
4.81
Some evidence suggested that cognitive screening should form a more significant
part of the annual health assessment that a person over the age of 75 can
access through Medicare (‘the 75-plus health assessment’). It was argued that targeted
screening of people over the age of 75 would help increase the rates of early
diagnosis.
4.82
The Committee accepts that targeted screening for people at most risk of
developing dementia would likely result in higher levels of diagnosis, and in
many cases, in earlier diagnosis. This goal is to be commended.
4.83
On the other hand, the Committee heard that targeted screening could
lead to more false positives, and the costs of administering this screening for
patients who were not experiencing symptoms of cognitive decline may outweigh
the ultimate benefits of the screening.
4.84
The Committee is of the view that cognitive screening should not be
included in a 75-plus health assessment as a specific item of assessment. The
75-plus health assessment aims to assess a person’s ‘physical, psychological
and social function for the purpose of initiating preventive health care and/or
medical interventions as appropriate’.[54] Emphasising cognitive
screening over other important basic health assessments would likely defeat the
intended purpose of the assessment.
4.85
The Committee notes that the 75-plus health assessment can include an
assessment of the patient’s psychological function, and appears to allow a
General Practitioner to provide a person with a referral for a cognitive screen
or specialist assessment, if appropriate.
4.86
Rather than extend the 75-plus health assessment to allow for cognitive
screening, it may be more appropriate to promote the use of other existing MBS
items which allow for cognitive screening, or review the need to create
additional MBS items. The use of MBS items is discussed further in Chapter 5.
4.87
The Committee supports the promotion of a ‘case-finding’ approach to
diagnosis. This approach supports the timely assessment of an individual who has
reported symptoms relevant to dementia to their doctor or other medical
practitioner.
4.88
This view is in keeping with evidence provided in this inquiry, suggesting
that there is no ‘one size fits all’ approach to screening for dementia. Targeted
screening may encourage inaccurate screening which does not recognise a
person’s background or individual needs.
4.89
As discussed earlier in this chapter, a diagnosis of dementia should not
result from one screening test alone. A diagnosis should be formed by
undertaking a comprehensive assessment based on a GP’s clinical judgment,
screening test results, information gathered from the patient and/or their
families, and an assessment by an appropriately trained specialist, if
required.
Future planning
4.90
One of the benefits of early or timely diagnosis of dementia is the
ability for a person to plan for their own future, including:
n Planning their
financial future;
n Planning their future
care, including advance care directives; and
n Organising their
legal affairs.
4.91
Early diagnosis provides a greater opportunity for a person with
dementia to engage with important legal issues and arrange legal instruments
necessary to give effect to their wishes for the future, while they have the
capacity to do so.[55]
4.92
Early diagnosis of dementia assists a person to make decisions about
their preferences for their care when their condition progresses. As Professor
Kichu Nair submitted:
Advance care planning is important in dementia; often without
this patients are subjected to invasive and futile medical interventions. There
should be clear-cut instructions regarding this in patients who are admitted to
nursing homes.[56]
4.93
Planning for the future has been identified as one means of assisting
people with dementia to retain their independence. The NSW Department of Health
recommended that ‘Planning for the future and putting mechanisms in place
should be encouraged as a normal practice as we grow older.’[57]
4.94
Kate Swaffer stated that diagnosing dementia early allows people to
consider their future care needs and resolve financial and legal issues:
Early diagnosis for people with the symptoms of dementia is
essential as they may still have the ability to think logically, even though
their powers of reasoning may have started to be impaired. They will still be
able to discuss the implications of the illness and how it will affect them and
their families now and in the future, and it is the time when decisions
regarding future care needs and financial and legal issues must be considered,
while the person with dementia is still legally competent.[58]
4.95
The Committee heard that a lack of awareness across the community about
future planning options prevented people with a diagnosis of dementia from
seeking advice early. This lack of awareness extends to some health and legal
professionals, meaning that many people do not receive accurate future planning
information and advice, if they receive advice at all. Those who have made
advance care directives at times do not have their wishes implemented. Further,
the legislative steps required to secure financial and legal matters are
complex and differ between the states, adding to the difficulty of future
planning.
4.96
The barriers which prevent or delay a person planning for their future
with dementia, including legal barriers and lack of awareness, are discussed
further below.
Legal barriers
4.97
There are a number of legal barriers which prevent people with dementia
from organising their legal affairs early in the dementia journey. Primarily,
these barriers relate to the complex legislative framework covering issues such
as capacity, guardianship, advance care planning and directives, wills and
powers of attorney.
4.98
Woy Woy Community Aged Care told the Committee that there are a number
of processes and documents a person must understand to successfully plan for
their future:
It is very complicated and time consuming for the person with
dementia and their family/carer to know the difference between Power of Attorney,
Enduring Guardianship, ACAT assessment, bonds/accommodation fees as well as
Advance Care Plans.[59]
4.99
All adults, regardless of disability, are entitled to make their own
decisions, unless it is found that they do not have, or have lost, the capacity
to make certain decisions.[60]
4.100
The Law Council of Australia (the Law Council) considered how early
diagnosis provided greater opportunities to consider the implications of a
future loss of capacity:
Early diagnosis and intervention provides individuals with a
greater opportunity to consider the implications of a loss of capacity, to seek
information and to engage in discussions with their families, carers and
friends regarding their wishes. It is important that dementia sufferers are
encouraged to make decisions in relation to lifestyle, medical and financial
matters and take the necessary steps to execute any necessary legal
instruments, before a loss of capacity precludes them from being able to
validly do so.[61]
4.101
To retain control over their future medical care, living arrangements,
finances and guardianship, a person must engage with a number of processes
while they have capacity, including:
n The making of valid
powers of attorney;
n The making of a valid
will; and
n The making of valid
advance care directives.
4.102
Where a person is deemed not to have capacity to make certain decisions,
and they have not made valid legal documents advising of their decisions,
guardianship[62] laws may come into play.
Capacity
4.103
Capacity generally refers to the cognitive ability required to make a
legally valid decision.[63] The onset of dementia
can have significant implications on the future capacity of a person to make
legally valid decisions relating to important matters such as medical care,
financial and legal matters.
4.104
A person’s capacity to make decisions about their future care, as well
as organise their own legal and financial affairs, is influenced by the
timeliness of diagnosis. As the Law Council explained:
The issue of capacity is particularly important in the
context of the execution of wills and the appointment of substitute decision
makers; as such decisions can only be validly made where an individual has
legal capacity. Capacity therefore has significant implications for an
individual’s autonomy and ability to make important decisions about their life.[64]
4.105
Ms Colleen Pearce, Public Advocate in Victoria, told the Committee that
capacity was a vexed issue:
There are different tests of capacity in law for things such
as marriage, wills or guardianship, so capacity is really very vexed. For
people with dementia, as John said, capacity fluctuates. Can a person remain at
home and manage their own purse—the day-to-day? Perhaps they can. Can they
enter into a contract to sell their house? Perhaps they cannot. Capacity is not
an all-or-nothing; it is very situational. We say it really depends on the
decision that needs to be made and people should be able to make as many
decisions for themselves for as long as possible—but the law is a blunt
instrument.[65]
4.106
HammondCare considered that a major barrier to people planning their
future was in the confusion surrounding the definition of ‘legal capacity’ or
competence. HammondCare submitted:
A major impediment to effective planning at the moment is the
confusion around legal capacity or competence, which varies from state to
state. With the exception of Queensland, there are no legal definitions of
capacity in Australia so a number of tests are used to assess capacity. If the
definition of capacity was expressed more clearly and consistently, it would assist
people with dementia and their families to make critical plans about future
legal, financial and care decisions.[66]
4.107
The Victorian Law Reform Commission (VLRC) investigated issues of
capacity and incapacity in detail, in its 2012 report for the review of the Guardianship
and Administration Act 1986 (Vic). The report noted that different capacity
standards apply for different activities, such as entering into contracts, getting
married, or making a will. These legal rules have developed over time and
without coordination.[67]
4.108
The report noted that the Victorian guardianship laws drew a sharp
distinction between those people who had capacity, and those people who did
not. It did not cater for different levels of cognitive functioning.
Accordingly, the VLRC recommended that the way in which guardianship law
described and assessed incapacity be clarified, and that the guardianship laws
become sufficiently flexible to accommodate different levels of cognitive
ability and decision-making needs.[68]
4.109
The Committee received evidence advocating for recognition of
‘contextual capacity’, to avoid a person being shut out of all decision-making
after being diagnosed with dementia:
Legally recognise ‘contextual capacity’ for decision-making
(similar to Europe) to ensure individuals living with a dementia [diagnosis
are] not deemed ‘incompetent’ for all decisions and choices with each decision
being assessed for its appropriateness for an individual living with a dementia
to make.[69]
Committee comment
4.110
The Committee strongly supports any means of assisting people with
dementia to retain their independence for as long as possible.
4.111
One way in which people can maintain their independence is to make
decisions regarding their future care, living, legal and financial arrangements
while they still have capacity to do so, and record these decisions through valid
legal documents such as an enduring power of attorney, a will and advance care
directives.
4.112
The Committee notes that the law regarding a person’s capacity to make
certain decisions about their life, including care, financial or legal matters,
has developed over time, and in a range of different contexts. While this
report considers capacity in the context of people who have dementia, the
Committee notes the wider application of capacity in various other areas of the
law. This law also varies across each state and territory.
4.113
The assumption of capacity is the axis around which future planning must
revolve. The Committee therefore supports all efforts to ensure that the
recognition of capacity is assumed until proven otherwise, whether by clinical
or legal means.
4.114
The Committee supports the development of a national standard definition
of capacity, as it relates to a person’s ability to make decisions about their
care, or financial or legal matters. As advocated by the Victorian Law Reform
Commission, this definition should acknowledge ‘contextual capacity’ and
support the concept that a person may have capacity for some aspects of
decision-making, while perhaps not having capacity for others.
Recommendation 4 |
|
4.115
|
The Australian Government collaborate
with the state and territory governments, through the Standing Council on Law
and Justice, to develop uniform definitions and guidelines relating to
capacity. |
Complexity of legal processes
4.116
The Committee was told that there was unnecessary complexity in some of
the legal instruments and processes that would allow a person to successfully
plan for their future, including advance care directives and powers of attorney.
This complexity also extended to guardianship laws.
4.117
State and territory governments are responsible for making the laws
governing issues such as guardianship, advance care directives, wills and
powers of attorney. The Office of the Public Advocate, Victoria, explained that
these laws varied across the different states and territories:
Unfortunately, laws vary significantly in each State and
Territory as to the requirements for creation, execution and registration of
enduring instruments and operation of advance care directives. Although there
have been discussions in the Standing Committee of Attorneys‐General (now the
Standing Council on Law and Justice) about uniformity or harmonization of these
instruments, such discussions have not resulted in actual reform.[70]
4.118
Dr John Chesterman, of the Office of the Public Advocate, Victoria,
advised that the guardianship systems in place across the states and
territories were comparable, although slightly different. Dr Chesterman
considered the benefits of uniformity in guardianship laws and practices:
It makes sense for guardianship systems to be organised at
the state and territory level because service provision and accommodation
options for people with cognitive impairments and/or mental ill health are
normally provided at the state and territory level. Having said that, there
would be many benefits if we had greater interjurisdictional consistency in our
guardianship laws and practices.[71]
4.119
An advance care directive is based on ‘respect for personal autonomy and
is intended to ensure that a person’s preferences can be honoured during any
period of temporary or permanent impaired decision–making capacity, not only at
the end of life.’[72]
4.120
The types of advance care directives available in Australia varied
between the states and territories and include the ability to:
n allow directions to
be recorded, but not appoint a substitute decision maker;
n appoint or allow the
appointment of a substitute decision maker, but not record directions for
treatment; and
n allow directions to
be recorded and the appointment of a substitute decision maker.[73]
4.121
Dr Chesterman advised that the laws around enduring powers of attorney
were even more complicated:
Each of Australia's states and territories has its own laws
around enduring powers of attorney. They are all slightly different. Some of
them require registration; some do not. Some cover the three fields that ours
cover in Victoria; some do not.[74]
4.122
The Law Council of Australia advised the Committee that there were a number
of problems with substitute-decision making laws:
The legislative framework for substitute decision makers
varies across jurisdictions, and in some cases may be distributed across a
number of legislative instruments. This is problematic as it makes it difficult
for individuals to understand their options in relation to substitute decision
makers and the actions that they need to take to appoint a substitute decision
maker. Differences between jurisdictions and across instruments within
jurisdictions may also lead to uncertainty and confusion regarding the validity
of a substitute decision maker appointment and the scope of their roles and
responsibilities.[75]
Moves towards uniformity
4.123
In 2011 the Productivity Commission published a report titled Caring
for Older Australians.[76] The Commission found
that there were difficulties arising from jurisdictional differences in
legislation relating to advance care directives, powers of attorney and
enduring guardianship legislation.[77]
4.124
Recognising the need for a standardised national format for advance care
directives, the National Framework for Advance Care Directives was
published by the Australian Health Ministers’ Advisory Council (AHMAC) in September
2011. The Framework consists of a national terminology, a code for ethical
practice and best practice standards for advance care directives.[78]
4.125
Some of the objectives that underpinned the creation of the National
Framework are:
n To have mutual
recognition of advance care directives across all states and territories;
n That a person’s
preferences can be known and respected after the loss of decision-making
capacity;
n That decisions by
substitute decision-makers chosen and appointed under advance care directives
will be respected and will reflect the preferences of the person;
n That they be
recognised and acted upon by health and aged care professionals, and will be
part of routine practice;
n That clinical care
and treatment plans written by health care professionals will be consistent
with the person’s expressed values and preferred outcomes of care as recorded
in their advance care directive.[79]
4.126
The Law Council told the Committee that it supports the adoption and
implementation of the guidelines and principles outlined in the National
Framework for Advance Care Directives, as endorsed by AHMAC.[80]
4.127
In its report, the Productivity Commission recommended that other
‘onerous duplicate or inconsistent regulations’ such as powers of attorney or
guardianship rules, be identified and removed.[81]
4.128
In its report titled Older people and the law, the House of
Representatives Standing Committee on Legal and Constitutional Affairs
recommended:
Recommendation 26 (paragraph 3.183)
n The Committee notes
that the third Key Priority of the National Framework for Action on Dementia
2006-2010 proposes that the jurisdictions refer the issue of legislative
barriers regarding Guardianship, advance care planning, advance care
directives, wills, and powers of attorney to the Australian Government and to
the State and Territory Attorneys-General Departments.
n The Committee
recommends that the Australian Government place the third Key Priority of the
National Framework for Action on Dementia 2006-2010 on the agenda of the
Standing Committee of Attorneys-General.
Recommendation 28 (paragraph 3.200)
n The Committee
recommends that the Australian Government encourage the Standing Committee of
Attorneys-General to work towards the implementation of nationally consistent
legislation on guardianship and administration in all states and territories.[82]
4.129
In April 2006, the Australian Health Ministers’ Conference endorsed the National
Framework for Action on Dementia 2006-2010 (the Framework).[83]
One of the priorities for action identified in the Framework was to refer the
legislative barriers regarding guardianship, advance care planning and advance
care directives, wills and powers of attorney to the Australian Government,
State and Territory Attorneys-General Departments.[84]
4.130
The Committee questioned why, given the consensus regarding creating
uniform laws, there was not yet uniformity in the laws. The Public Advocate for
Victoria outlined some possible reasons:
It is two things. Firstly, political will. Secondly, it is
very difficult to get national uniform legislation. The Australian Council on
Guardianship and Administration put forward a proposal at one stage to try and
harmonise the laws: if we cannot get national laws, can we get harmony in the
laws at a state level? But you have got to have the political will to do that
and have it high on the agenda. I think the enduring power of attorney laws
have been on the attorney-generals committee but that has fallen off the agenda. So it has to be on the agenda and be a
priority.[85]
4.131
Dr Chesterman expanded:
One of the politically contentious aspects of this concerns
not the most frequently used enduring power of attorney—which is the financial
one—but others regarding medical treatment and the ability of people to appoint
others to, for instance, refuse medical treatment. That creates some political
consternation among the various jurisdictions, so it is hard to get uniformity
on that issue. That is a significant impediment.[86]
Committee comment
4.132
From the evidence before the Committee in this inquiry, the Committee is
of the view that there is merit in simplifying the laws relating to
guardianship, advance care planning, wills and powers of attorney, so that
there is uniformity across the states and territories.
4.133
The Committee has heard that creating uniformity and simplicity could
make it easier to raise general awareness and educate people about the laws,
and what it means for them, or their patients. The issue of awareness regarding
future planning is discussed further below.
4.134
The Committee supports the steps taken by government thus far, towards
creating uniformity in these laws. The Committee notes, for example, the National
Framework for Advance Care Directives endorsed by AHMAC.
4.135
The Committee is of the view that if the creation of uniform legal
instruments and legislation will assist people with dementia plan for their
future and retain some control over the major decisions in their lives, then this
goal should be supported.
Recommendation 5 |
|
4.136
|
The Australian Government collaborate
with the state and territory governments, through the Standing Council on Law
and Justice, to develop uniform definitions and guidelines relating to powers
of attorney. |
Awareness about future planning
4.137
There is concern within the legal and medical community about what is
perceived to be a lack of awareness regarding the significant implications that
dementia may have on an individual’s ability to plan for their future.[87]
4.138
The Office of the Public Advocate in Victoria outlined a number of
statistics which showed the lack of awareness about future planning:
When we add our guardianship clients with dementia to our
clients with acquired brain injuries and mental ill health, we find that more
than half of our guardianship clients are people who once had capacity to make
their own decisions. This has important implications for the promotion of
alternatives to guardianship, in particular enduring powers of attorney…
… Most of our clients could have avoided the need for a
guardianship order if they themselves had appointed someone to make their key
decisions for them.[88]
4.139
Dr Chesterman continued:
… One of the key challenges I imagine for this inquiry will
be to ascertain how we might improve the general public's knowledge of and
uptake of enduring powers of attorney.[89]
4.140
The Australian Guardianship and Administration Council (AGAC) considered
that the appointment of a responsible enduring attorney or enduring guardian
following an early diagnosis of dementia could avoid the need for an
application to a guardianship tribunal to be made, whereby a statutory
authority of ‘last resort’ such as the Public Advocates/Guardians or the Public
Trustees was appointed:
Sadly, many people put off consideration of appointment of an
attorney or guardian until well after a diagnosis has been made, because it can
be emotionally difficult, may involve the expense of consulting a trustee
company or a legal practitioner or is administratively demanding. Often people
do not consider it necessary until the stage at which the person with dementia
is admitted to a nursing home. At that stage, the person’s dementia may be so
advanced that they are incapable of executing a valid instrument.[90]
4.141
While discussion about planning for the future may often focus on legal
matters or accommodation, the medical profession and allied services and
industries also play a critical role in assisting those with an early diagnosis
of dementia. As the RACGP stated:
The GP is well placed to inform the patient and family not
only about the condition, diagnosis and prognosis but also about the
consideration of legal and financial matters, available support, and care
options. Early intervention allows for future planning of more complex areas
such as financial planning and future care, to simpler issues such as driving
capacity and daily activity.[91]
4.142
The Australian Government Department of Health and Ageing explained that
GPs reported feeling reluctant about providing advice regarding future
planning:
General Practitioners report uncertainty as well as
reluctance about their role in relation to legal matters arising in dementia
care, e.g. enduring power of attorney, advance care plans. This uncertainty is
also a cause of frustration and confusion for the person with dementia and
their carer.[92]
4.143
The NSW Department of Health has advised the Committee that:
…eliciting preferences about future care in the event they
can no longer make decisions should be normalised as part of routine health checks.
Consumers expect their health professionals to raise Advance Care Planning with
them.[93]
4.144
The Consumers Health Forum of Australia was advised that awareness
within the health sector about advance care directives was at times variable:
Consumers have told CHF that awareness of the option of an
advance care plan is dependent on their care location and care provider. In
other words, it is dependent on ‘luck’…[94]
4.145
Mr Tim Tierney, of Tierney Law in Tasmania, submitted that more
practical training was needed for lawyers and health professionals on dealing
with capacity issues.[95]
4.146
Dr Chesterman submitted that creating uniformity in the laws regarding powers
of attorney would assist in attempts to educate the public about future
planning:
If we had national laws around enduring powers of attorney,
we could then engage in a national education program which would encourage
people to have the conversation with family and friends, and say, 'In the event
that I am not able to make my own decisions, I want such and such to make those
decisions for me.' By doing that you obviate the need for public guardianship.[96]
4.147
The Committee heard that one resource which was effective in helping
people understand the definition and implications of capacity was the NSW
Capacity Toolkit, developed by the NSW Attorney-General’s Department. This
toolkit has since been adapted for use in Tasmania.[97]
4.148
CDAMS submitted:
Clearer guidelines and education regarding the assessment of
capacity are required for the legal profession, health workers and for those
that are able to act as witnesses. The NSW Capacity toolkit is a good example
of this.[98]
Committee comment
4.149
A major barrier to a person retaining their independence following a
diagnosis of dementia is the lack of awareness about available future planning
options.
4.150
Achieving greater rates of early diagnosis of dementia would be futile
if a person is not made aware of the options available to them to achieve
greater independence, or provided with the tools necessary to plan for their
future care and support.
4.151
Accordingly, the Committee takes the view that along with the move
towards uniform laws regarding future planning, there is also a need to educate
and inform the public, as well as the medical and legal community, about the
importance of future planning, and the options available to a person.
4.152
As part of this education, the Committee supports the development of a
national ‘toolkit’, such as the one developed by the NSW Attorney-General’s
Department, which provides guidance on the issue of capacity and its
implications. This toolkit could be expanded to include broader information
relevant to a person who has received a diagnosis of dementia and their family or
carers, including general information on advance care directives, powers of
attorney, wills and other processes relevant to their future care or financial
and legal arrangements.
4.153
The Committee discusses the need for contextualised practice guidelines
for GPs to provide people with advice on local pathways, including future
planning options, in Chapter 6.
Recommendation 6 |
|
4.154
|
The Australian Government collaborate
with the state and territory governments to develop a toolkit or guidelines to
assist medical/legal professionals, or a person diagnosed with dementia and
their carer understand future planning options. |