People are scared of going for
diagnosis. A lot of doctors are not properly trained and do not diagnose or
inform or support properly. People will not tell family to get support. There
is an enormous amount of stigma.[1]
Chapter 3 Awareness
3.1
A recurrent theme which emerged from the evidence to this inquiry was
the pressing need for greater awareness about all aspects of dementia.
3.2
The Brotherhood of St Laurence, a not-for-profit organisation and
service-provider, considered that greater awareness and understanding of
dementia across all levels of society could improve the quality of life of
people with dementia and their carers.[2]
3.3
The Committee was told that greater awareness would inevitably lead to higher
rates of early diagnosis and intervention of dementia. As stated by Professor
Henry Brodaty, of the Minister’s Dementia Advisory Group (MDAG):
Without awareness of people in the community, awareness of
families, awareness of people with dementia themselves, awareness amongst
health practitioners, then we will not get timely diagnosis, we will not get
referral, we will not get good management, we will not get services that are
required and we are not going to get people attending to…enduring power of
attorney and enduring guardianship advanced care directives, speaking to
palliative care. That is number one, awareness.[3]
3.4
Lack of awareness of dementia is said to have contributed to the stigmatisation
of dementia, leading to people living with dementia experiencing social
isolation, discrimination and disempowerment. [4]
3.5
To achieve greater rates of early diagnosis and intervention of
dementia, awareness of dementia needs to be increased across the population.
Specifically, the Committee heard that the following groups would benefit from
greater awareness of dementia:
n People with dementia
and their families and carers, who need information on:
§
Preventive measures and lifestyle factors to maintain good brain
health;
§
Dementia symptoms and assessment options;
§
The various pathways available for treatment and care of
dementia, including options for respite care and care packages available; and
§
The future planning options available to them, including advanced
care directives, wills and estate planning and powers of attorney;
n The wider community, who
need information on:
§
How to maintain a brain-healthy lifestyle;
§
Dementia as a condition, including the needs of those living with
dementia;
§
The need to support carers and people with dementia; and
§
The symptoms, as well as diagnostic and treatment options for
dementia; and
n Health professionals
including allied health service providers, General Practitioners and Nurse
Practitioners, who need education and training on:
§
The symptoms to look out for;
§
The assessments and interventions available; and
§
The referral options for treatment and community support.
3.6
In this chapter, the Committee considers the lack of awareness and stigmatisation
of dementia within the community; how greater awareness of dementia could be
raised; and the need for more education and training within the medical community.
Lack of community awareness
3.7
The Australian Institute of Health and Welfare (AIHW) reported that 41
per cent of Australians aged between 15 and 74 had a level of health literacy
(that is, the ability to understand and use information relating to health
issues) that was adequate or above. A less than adequate health literacy level
is said to have a direct impact on a person’s health and the costs to the
broader community.[5]
3.8
Coupled with the low rates of health literacy is a lack of awareness and
understanding about dementia within both the health sector and in the wider
community.[6]
3.9
Pfizer Australia told the Committee:
Dementia has been incorrectly regarded as a natural part of
ageing. The level of understanding and awareness of the disease amongst the
general community is very low. The ‘Dementia is Everybody's Business’ Health
Report, published in 2011, highlighted the need for more awareness about the impact
of dementia in the community. While most Australians associate dementia with
memory loss, they are still unclear about how common dementia is or what other
symptoms are associated with dementia. While dementia is the third leading
cause of death in Australia, only 1 in 5 Australians is aware that dementia is
a progressive illness and sufferers experience a reduced life expectancy.[7]
3.10
Mr Andrew Larpent, of Southern Cross Care (SA and NT), explained the
impact of a lack of health literacy regarding dementia services and support:
It should also be obvious that there is a need within the
wider community for information on where to go for referral to specialists and
service providers of all sorts. Probably because of the historic
marginalisation of those with dementia and their carers, there is far too
little overall ‘healthy literacy’ about what an individual should do to seek
help for themselves or one they are caring for.[8]
3.11
Jenny, a carer who called for a major public awareness campaign on
dementia, observed that in the past there had been little in the media about
dementia:
In 10 years, you do not regularly hear any media
advertisements re dementia. When we look back re cancer, prostate cancer,
depression, suicide, addictions, heart disease, stroke, diabetes etc. they are
so regularly advertised and discussed, but not dementia.[9]
3.12
Professor Barbara Horner, of Curtin University, explained there was
still an enormous gap in education, awareness and understanding of dementia.
Despite the fact there was an abundance of information available on dementia,
people only paid attention to it when it was relevant to them:
Education—like good health promotion programs, for example—is
only picked up by people when they think that the condition has relevance for
them. So, while we have a plethora of information out there, there are still an
awful lot of people in the community who do not pick it up and do not pay
attention to it. That is not an uncommon pattern in terms of health promotion
and other conditions that we have had. We may have information out there, but
there still is a big gap in terms of knowledge and understanding, or ignorance
in terms of where it is in their life.[10]
3.13
Professor Horner noted there was a community attitude towards making
light of memory loss:
There is still, also, a community attitude towards making
light of the fact that you have memory loss, and we all know lots of flippant
comments and jokes that are passed around in terms of things that you have
forgotten. I think that comes out of ignorance and lack of understanding.[11]
3.14
Carers Australia considered that carers and family members of a person
with dementia needed greater awareness of the condition, as they had an
important role to play in determining a person’s care needs:
Family members and carers of a person with early stage
dementia are often the first to notice cognitive decline, changes in mood and
behaviour and changes in the person’s care needs associated with the onset of
the disease. They therefore have a critical role to play in early diagnosis.
They can, however, only play this role if they are aware that the changes they
notice are changes which are commonly experienced by people with dementia
rather than, for example, being assumed to be a consequence of ageing.
Unfortunately many people are not aware of the early symptoms of dementia.[12]
3.15
Baptcare, a service provider in Victoria, considered that people with
Younger Onset Dementia, or people at the early stages of dementia, may be
prevented from remaining active in the workplace, because of a general lack of
understanding about dementia:
Many younger people are still working at the time of
diagnosis. Some find all of a sudden they ‘can’t cope’ with certain aspects of
their work. If changes are made in the workplace, many find they can’t learn
new things or adapt to new technology. Work colleagues start to notice changes.
Some people leave work without realising what is happening to them and then
find six or twelve months or more there is a diagnosis of dementia. Some leave
work without realising they are entitled to superannuation or disability
insurance.[13]
3.16
The Brotherhood of St Laurence explained how a lack of awareness within
the workplace could impact on a person’s quality of life:
A consequence of lack of understanding in the workplace is
stigmatisation and the inability for the person with early onset dementia or
first stage dementia to maintain employment. This has an impact not only on the
person’s economic and social wellbeing but also on society which loses the
wealth of human knowledge and resources which the person contributed.[14]
Stigma
3.17
The lack of awareness regarding dementia has led to the stigmatisation
of dementia within society. This stigma is said to prevent people from seeking
an assessment of dementia, and diminish the quality of life and independence of
people with dementia.
3.18
The Committee was told that approximately 63 per cent of Australians
feared getting Alzheimer's disease or another form of dementia, second only to
the fear of having cancer.[15] Further, 56 per cent of
carers reported that people with dementia were discriminated against, and almost
one third of Australians said that they would feel uncomfortable spending time
with someone with dementia.[16]
3.19
Dr Roderick McKay, of the Royal Australian and New Zealand College of
Psychiatrists (RANZCP), argued that the public perception of ageing in general
formed part of the stigma attached to dementia:
The stigma of dementia has two elements to it. There is the
stigma of old age and there is the stigma of something going wrong with the
mind, be it mental illness or not. The stigma is that something is going wrong
with the mind.[17]
3.20
The National Ageing Research Institute (NARI) stated that the media was
a powerful medium for translating knowledge about dementia for carers, people
living with dementia and the general public, and yet many ageing‐related stories in the
media were negative. NARI submitted:
The media is potentially a powerful tool to help spread
health awareness and influence perceptions, beliefs and attitudes yet we have
not fully developed the supports necessary for effective knowledge translation
using the media. The media's role as disseminators of information on dementia
is particularly important due to the potential to influence public perception
of the risk reduction and early intervention.[18]
3.21
McAdam Aged Care Art Recreation Therapy believed that the media and
individuals within the aged care sector itself perpetuated the myth that people
with dementia were incapable of learning new things and incapable of showing
anything but decline.[19]
3.22
Dr McKay feared that the way dementia was publically promoted could
inadvertently perpetuate the stigma surrounding the condition:
As we grow older society should value the fact that most
people grow older and grow wiser. It is not just a saying; it is actually true.
But we have a society that expects that as we grow older we lose wisdom, and
the promotion of dementia as a serious problem—which it is—raises the question
from society and from people individually: why are we getting more and more
people with dementia?[20]
3.23
Dr Carmel Lum, Senior Clinical Neuropsychologist and Clinical Psychologist,
whose father had dementia, noted that fear was a common emotion experienced
when a person received a diagnosis of dementia:
As a clinician, I observe fear as a very common
emotion in spouses and family members when first informed of a
diagnosis of dementia. It is the ‘new cancer’ and initial reactions include
‘all is lost’ and feelings of helplessness. The public’s knowledge of dementia
is largely informed by the often over-dramatised negative manifestations of
dementia in a TV soap drama, or a journalist’s investigative account of a
failed nursing home, complete with images of ailing elderly residents in the
advance stages of dementia.[21]
3.24
HammondCare submitted that efforts to improve the quality of life of
people living with dementia would continue to be hampered by the stigma
associated with dementia, if it was not addressed.[22]
3.25
Dr McKay said changing the way society viewed dementia was important in
ensuring that people sought access to assessment and treatment:
Changing the frame of how we look at it is much more
important. Eighty per cent of people at 80 will not have dementia. We can look
at it the other way around: 20 per cent of people at 80 have dementia. One
hundred per cent of people at 80 fear getting dementia. We have to turn that
around because people are not going to seek help if they think that seeking
help will mean they will be told what they fear most. We have to reframe that.[23]
3.26
Woy Woy Community Aged Care agreed that education about dementia was
needed:
Education is a must and needs to be ongoing, widespread
public education campaigns are required to help reduce the stigma associated
with dementia. It needs to encourage people to seek diagnosis and support
early, often the person themself is acutely aware of their declining cognitive
ability but hides it as best they can, whereas with other diseases people are
more willing to seek help earlier.[24]
Committee comment
3.27
The importance of health literacy (and brain health literacy in
particular) cannot be underestimated. Boosting brain health literacy and
awareness of dementia can assist in achieving earlier diagnosis and
intervention in a number of ways.
3.28
Firstly, providing relevant information on brain health and the symptoms
and risk factors of dementia enables people to take preventive steps to achieve
better brain health, or potentially delay the onset of dementia.
3.29
Secondly, achieving greater awareness of dementia assists in helping
people (or their families and carers) identify symptoms of potential concern
and seek appropriate assessment, treatment and support at the earliest
opportunity.
3.30
The lack of understanding about dementia within the community has
resulted in the stigmatisation of dementia and the perpetuation of negative
attitudes about dementia.
3.31
As the Committee heard, the stigmatisation of dementia poses a major
barrier to people achieving a timely diagnosis and intervention. The stigma
surrounding dementia has led to people with dementia being ostracised, feeling
socially isolated or even being discriminated against.
3.32
Further, because of the stigma surrounding dementia, many people are
left with the misconception that nothing can be done to delay the onset or
assist with the symptoms of dementia. This prevents people from seeking
diagnosis and assistance.
3.33
Worse still, this view is held by some medical practitioners, preventing
them from making a diagnosis. The barriers for medical practitioners in making
a diagnosis of dementia are discussed further in Chapter 5. The need for
medical practitioners to have a greater understanding of dementia is discussed
further below.
3.34
Demystifying and de-stigmatising dementia will help ensure that people
seek assessment when they first experience symptoms of cognitive decline. In
turn, medical practitioners will be more likely to provide an accurate and
timely diagnosis, and make appropriate referrals for treatment and support.
3.35
Raising awareness of dementia will also ensure that people who receive a
diagnosis of dementia are not discriminated against, isolated or marginalised
at the very time when they have most need of support. They will be more likely
to remain social engaged and participate in the local community, whether it be
by remaining in the workplace while they have capacity to do so, or involving
themselves in the community in other ways.
3.36
How greater awareness of dementia might be raised is discussed further
below.
Raising greater awareness of dementia
3.37
In considering how best to raise awareness and improve communication on
dementia and dementia-related services in the community, numerous organisations
and individuals called for the development of a comprehensive national
awareness campaign on dementia.[25]
3.38
Ms Sue Pieters-Hawke considered that a national awareness campaign could
address the range of misconceptions that underpin the many negative,
prejudicial and stigmatic attitudes and ideas that existed about dementia. In
this way she reasoned, raising awareness of dementia through a public awareness
campaign could lead to a big change in a person’s health outcomes:
Really we are missing opportunities for very different life
courses and life outcomes for want of really addressing fundamental attitudes
and information and possibilities as well as the potential for risk reduction
and reducing long term the numbers of people who have dementia. We really need
an all-out campaign such as occurred around disability, around mental illness,
around HIV. It can be done, but we have to recommend and fund that it be done.[26]
3.39
There were numerous submissions containing suggested ways to raise greater
awareness of dementia. These include:
n Mental health
promotion activities that focus on the needs of older people and their carers;
n A national three-year
anti-stigma campaign that incorporates lessons learned from the New Zealand
campaign;
n A national mental
health literacy campaign to promote recognition of early signs of illness, the
need to seek help and the value of early action;
n Improved promotion
and linkages to local and regional services from the national dementia
helpline;
n Raising awareness
using a multimedia approach, including:
§
Use of television programmes, newspaper articles and other media
promoting dementia stories;
§
Use of the arts, for example creating children’s books like Mem
Fox’s ‘Wilfred Gordon Partridge’;
§
Use of social networking to create positive messages;
§
Innovative media programmes such as the Israeli Alzheimer’s awareness
campaign;[27]
n Using community
resources such as:
§
presentations in local clubs;
§
presentations in local shopping centres;
§
presentations/promotions at local shows and other events;
n Plain language fact
sheets;
n Providing opportunities
for people with early stage dementia to express their views and influence government
policy and government-funded services;
n Creating a supportive
environment that provides opportunities for people with dementia and their
families/carers to share their experiences; and
n A change of focus to
early detection; preventative health and wellbeing; and the positive lives that
could be led by people who have a diagnosis of dementia.[28]
3.40
Carers Australia supported a broadly targeted dementia awareness
campaign, however considered that such a campaign should recognise the role of
carers:
An initiative in awareness raising would need to be targeted
broadly and address not just community ignorance but also prejudice and in some
cases commercial practice. As a society we need to be less inhibited in talking
about dementia…This idea of carers being considered as ‘partners in care’ could
usefully be incorporated into a dementia awareness initiative. [29]
3.41
The Brotherhood of St Laurence submitted that awareness-raising needed
to be relevant to the context and audience.[30] Accordingly, information
for carers needed to aid their understanding of dementia and provide
information on the skills they needed to assist in caring, as well as
information on respite and financial support.[31]
3.42
Ms Kate Swaffer, who was diagnosed with Younger Onset Dementia, believed
the best way of understanding the needs of someone with dementia was to ask
them about their experiences and involve them in any public awareness campaign
about living with dementia:
It is people with their own stories who can have the biggest
impact on change, and so people with dementia should be encouraged to become
involved in education and awareness programs, run by Alzheimer’s Australia, or
other service providers to help bring about change. These people have the power
to create change in attitudes, and public awareness.[32]
3.43
The Pharmacy Guild of Australia argued that community pharmacy could
support early diagnosis and intervention through active participation in
consumer awareness campaigns regarding the signs of dementia and raising
awareness that dementia was not a natural part of ageing:
This established network of highly qualified health
professionals provides a nationally accessible platform to disseminate clear and
consistent messages and support. Both well and unwell people visit their
community pharmacy, providing an opportunity to engage people along the health
spectrum and hard-to-reach populations who do not utilise other health
services.[33]
3.44
Evidence to the Committee advocated for the need for positive language
to be used around dementia, to reduce the stigma and fear around the condition.
3.45
Dr McKay explained that the fear and stigma attached to dementia was
leading people with treatable conditions to avoid assessment:
'Ageing wisely' is the phrase that comes most to mind because
it is promoting what goes right in old age rather than what goes wrong in old
age. If you set the expectation that things should go right in old age then you
should be worried in a constructive way if things are not going right, and you
promote the things that you can effectively do—things that people can relate to
that you can effectively do—if that is not happening. It could be as simple as
a change in medication. It often is. It could be a very simple medical illness.
It could be an infection in the urine, which keeps going because you fear that
you have dementia instead. It can be something simple such as depression or
anxiety that can be effectively treated and improved. Focus on the very
positive things that can be done rather than focus on the fact that it might be
dementia.[34]
3.46
Mr Larpent was of the view that the language around dementia needed to
be recalibrated:
What I hope to try and encourage is that parliament moves
towards a national dementia strategy and a whole-system approach, one that
focuses on people living well with their dementia and one that recalibrates the
language. We should stop talking about suffering; we should stop talking about
patients; we should talk about people living with their dementia and how we can
help them to live well… We need to think about that in terms of the language we
use. Dementia is a condition. People talk about it as a disease. You could
categorise it as a disease but it is more helpful to categorise it as a
condition which the whole of society needs to recognise and understand… We
particularly need to recognise that people are people a lot longer than they
are patients.[35]
3.47
Royal District Nursing Services (RDNS) noted that the use of the term
‘dementia’ at times could be a barrier in itself:
There are also instances where the use of the term ‘dementia’
can in fact be a barrier in itself due to the fear and stigma still attached to
this term. In such cases it has can be beneficial to focus attention on
understanding and treating the particular signs and symptoms, rather than
emphasising the diagnosis of dementia.[36]
3.48
The National Ageing Research Institute (NARI) submitted that the media
was a powerful tool for raising awareness of dementia, if harnessed
appropriately:
There is a substantial literature on quality of reporting
health information in the media, especially with respect to stigma and mental
illness but little attention has been paid to the reporting of dementia. The
media is potentially a powerful tool to help spread health awareness and
influence perceptions, beliefs and attitudes yet we have not fully developed
the supports necessary for effective knowledge translation using the media. The
media's role as disseminators of information on dementia is particularly
important due to the potential to influence public perception of the risk
reduction and early intervention. An independent body that monitors the quality
of news stories about dementia and supports the translation of latest research
findings from researchers to the general public would assist in raising
awareness of the condition.[37]
3.49
The National Cross Cultural Dementia Network (NCCDN) advised that the
Australian Multicultural Foundation had undertaken a community awareness
campaign on dementia for a number of ethnic communities using ethnic radio and
print media, which had proven successful. The NCCDN called for further resources
to be placed into raising awareness of dementia among ethnic communities.[38]
3.50
Alzheimer’s Australia prioritised awareness as a key issue to be
addressed, advocating for a comprehensive national dementia awareness campaign to
de-stigmatise dementia, and raise understanding and awareness in the general
community and within the primary care sector.[39]
3.51
COTA Australia (COTA), the national policy arm of the eight State and
Territory Councils on the Ageing, joined the call for a comprehensive national
awareness campaign to increase community understanding of dementia. COTA added
that such a campaign should address the needs of specific community groups:
Alzheimer’s Australia is best placed to lead such a campaign
but there would need to be provision for them to work with other groups to
ensure it addresses the needs of specific groups including Aboriginal and
Torres Strait Islander communities, people from culturally and linguistically
diverse backgrounds and the lesbian, gay, bisexual, transgender and intersex
communities.[40]
3.52
COTA submitted that a national awareness campaign would have a number of
benefits:
Such a campaign would reduce the stigma of dementia and be
better accepted in the community. This should reduce social isolation for
people with dementia and their carers, and so would make a big difference to
their quality of life. As one carer said “Norm was a keen bowler but after his
diagnosis his bowling club friends were a bit scared of how he might behave. If
they only understood his condition I feel sure they would be more supportive”.[41]
3.53
Pfizer Australia outlined a successful national awareness campaign run
in the UK:
The Alzheimer's Society UK ran a successful Worried about
your memory? awareness campaign spanning public, GP clinics and pharmacy
environments in 2008 which increased patient referral to GPs. The Department of
Health in the United Kingdom supported the campaign as part of their commitment
to a National Dementia Strategy, where raising public awareness and increasing
rates of diagnosis were big recommendations.[42]
3.54
Pfizer drew the Committee’s attention to the 2012 World Health
Organization (WHO) and Alzheimer’s Disease International (ADI) report called Dementia:
A Public Health Priority,[43] which considered the key
tenets of dementia-raising campaigns that had been undertaken around the world.
These were:
n Raising public
awareness and understanding of dementia;
n Reducing the stigma
of dementia and challenging discriminatory behaviour;
n Recognising the early
signs of dementia to aid early diagnosis;
n Living well with
dementia; and
n The importance of a
healthy lifestyle and reducing risk.
3.55
Pfizer submitted that a national communication strategy should be
developed in Australia which addressed the above objectives:
In Australia Pfizer has supported the dementia awareness
activities of Alzheimer's Australia over the last 12 years. These activities
have generated significant information sharing and awareness-raising across a
broad cross-section of the population. We believe there needs to be a national
communication strategy in Australia which addresses the objectives put forward
above, and involves a broad range of stakeholders including Alzheimer's
Australia. Raising community awareness will open avenues for disease support
and management for patients and break down the stigma sometimes associated with
the disease. It will provide caregivers and families helpful information and
opportunities to seek assistance.[44]
Committee comment
3.56
The Committee heard a number of suggestions about how greater awareness
of dementia could be raised within the community. The main proposal to improve
awareness was for a comprehensive national awareness campaign to educate people
about dementia, reduce the stigma surrounding the condition, and promote early
diagnosis and intervention.
3.57
The Committee notes there have already been a number of public awareness
and education campaigns launched by the Australian Government and/or Alzheimer’s
Australia, including the Mind Your Mind campaign[45]
and the more recent Your Brain Matters campaign[46].
Noting the focus of Your Brain Matters is on brain health and the
prevention of dementia, this campaign and prevention more generally will be
discussed in Chapter 7.
3.58
The Committee notes the suggested themes for a national awareness
campaign, as outlined by the World Health Organisation (WHO) and Alzheimer’s
Disease International (ADI) in the report, Dementia: A public health
priority, as had been adopted by the United Kingdom in its national
awareness campaign. These themes are:
n Raising public
awareness and understanding of dementia;
n Reducing the stigma
of dementia and challenging discriminatory behaviour;
n Recognising the early
signs of dementia to aid early diagnosis;
n Living well with
dementia; and
n The importance of a
healthy lifestyle and reducing risk.
3.59
The Committee supports the proposal for a comprehensive national public awareness
campaign to create better awareness of dementia among the community, based on
the themes identified above. The Committee encourages the Australian Government
to work with Alzheimer’s Australia and in consultation with consumers and other
relevant community groups, to undertake a comprehensive national awareness
campaign on dementia. Such a campaign should operate on a multimedia platform,
and target specific population groups in need of greater awareness, such as
carers and special needs groups at particular risk of dementia.
Recommendation 1 |
|
3.60
|
The Australian Government, in collaboration with Alzheimer’s
Australia and relevant consumer groups, develop and implement a national
communication strategy and public awareness campaign to promote greater
awareness of dementia, using (but not limited to) the following themes:
n
Better public awareness and understanding of dementia;
n
Reducing the stigma of dementia and challenging discriminatory
behaviour;
n
Recognising the early signs of dementia to aid early diagnosis;
n
Living well with dementia; and
n
The importance of a healthy lifestyle and reducing risk.
|
Awareness for General Practitioners (and other health professionals)
3.61
The Committee heard evidence from a range of consumers, medical
practitioners and other stakeholders, that there was a need for a greater
awareness of dementia within the medical profession itself, if there was to be early
and timely diagnosis and intervention of dementia.
3.62
Mrs Fiona Young, a Clinical Nurse Consultant in Tasmania, said it should
not be assumed that health professionals had a good understanding of dementia,
as it was a specialised area:
For health professionals there needs to be awareness too. We
cannot assume that because people are health professionals they have a good
understanding of dementia because it is a specialised area. Not all health
professionals do, but a lot of them are in the ideal space to identify people
and refer them on to enable them to be assessed appropriately and aid them in
getting a diagnosis. The same applies to GPs too. We cannot assume that they
understand what the signs and symptoms of dementia are and how that affects
people's day-to-day lives.[47]
3.63
Specifically, there was concern regarding the level of awareness among General
Practitioners (GPs), who were often the first point of call for a person
seeking assistance for symptoms of memory loss or cognitive decline. As stated
by the Royal Australian College of General Practitioners (RACGP):
General practitioners (GPs) play an important role in
recognising, assessing, diagnosing and managing dementia, and maintaining
effective and ongoing communication and coordination between the patient, carer
and family with primary and specialist providers.[48]
3.64
The Committee was told that GPs needed greater awareness and education
of dementia to assist them to identify the symptoms of dementia, provide advice
about the assessment and treatment process, and give appropriate referrals for
further treatment and support.
3.65
Mr Jack Sach, of Alzheimer’s Australia Victoria, told the Committee that
dementia was often not well recognised by GPs, due to a lack of training:
Many GPs are not well trained in the application of cognitive
screens such as the mini-mental and so forth. Many GPs have difficulty just
keeping pace with the latest science in this area, which is very, very rapid at
the moment. Some GPs may be reluctant to refer to specialists, hence there is
misdiagnosis occurring. Many GPs do not fully appreciate the services that are
available and therefore do not refer on…
… There is also a limited understanding of the evidence,
which is now becoming quite well established, that you can actually reduce your
risk of dementia through lifestyle factors, and many still believe that you
cannot influence the progression of dementia.[49]
3.66
The Committee was given anecdotal evidence that some GPs were either
fearful of providing their patient with a diagnosis, or falsely believed that
providing a diagnosis was futile.[50]
3.67
Ms Helga Merl, a Nurse Practitioner from Hunter Medicare Local, said one
of the barriers to GPs providing a diagnosis of dementia was that they did not
understand what could be done once a diagnosis was made:
What do they do after they have diagnosed someone with early
dementia? A lot of people feel there is nothing much that can be done, but of
course we can do so much. We can look at treating reversible causes and
managing symptoms that are present. We have a big push now on health promotion,
and that is also really valuable for people with early diagnosis or early
symptoms. It is never too late to do something positive for your brain, the
same as it is never too late to do something positive for your heart or your
physical activity or your diet. All those things contribute to memory problems.[51]
3.68
Mr Mark Howland, a Clinical Nurse Consultant, said that the lack of
understanding of dementia across the medical community caused cases of
misdiagnosis:
Certainly, when you are talking to people there are a whole
range of differential diagnoses that you need to make before you come up with a
diagnosis of dementia. Unfortunately, what people tend to do is see someone who
is old, see that they are confused, add one and one together and get six. And
they come up with a dementia diagnosis. If not a diagnosis that is certainly a
belief that people then hold about a patient. The rest of the care for that
patient is based on the idea that it is probably dementia.[52]
3.69
The RACGP recognised that people with early stages of dementia were not
being diagnosed in primary care and advised that GPs needed ongoing training
and awareness across a range of issues regarding dementia diagnosis and
management:
In addition to the challenges of diagnosis, GPs needs to keep
abreast of the latest available services, networks, guidelines, therapies and
legal aspects in addressing dementia treatment. The RACGP recognises the need
for ongoing professional training for GPs to improve knowledge and confidence
in early diagnosis and management as well as awareness of available support
services.[53]
3.70
Speech Pathology Australia (SPA) detailed what it saw as a lack of
awareness within the medical community about the communication difficulties a
person with dementia could experience and how this impacted on the quality of
care provided to them:
SPA wishes to highlight the fact that there is a significant
lack of awareness and understanding of the communication difficulties for some
people who have a diagnosis of dementia. This exists at the community level
within GP practices where the GP may fail to pick up severe progressive aphasia
as the first sign of dementia; at the acute level when people are hospitalised
into dementia assessment and care beds; at the rehabilitation level where
intervention can improve communication function and also delay deterioration; as
well as at a residential care level for staff and carers and at a social level
for family and friends. This lack of awareness and recognition of the severe
communication impairment for some people with dementia causes unintended
discrimination and inequity for this group.[54]
3.71
The Community Dementia Service from Tasmania proposed the establishment
of a support service to assist GPs with diagnosis, treatment and ongoing
management of people diagnosed with dementia, including assistance for their
carers.[55]
3.72
Professor Dimity Pond, of MDAG, informed the Committee of a GP education
trial that had been undertaken in specific regions around Australia. Professor
Pond said of the trial:
We did a GP education trial using evidence based education
strategies. A lot of people complain about educating GPs—they don't listen, et
cetera—but if you use evidence based strategies in doing it then it does work,
and ours did work. We raised the identification rate for dementia from under 50
per cent to 65 per cent amongst the GPs who were in our intervention arm. It
did not change at all in the control group. That was through two half-hour
detailing visits when we asked GPs to audit their patients and give their view.
We fed back to them after the second visit. It was not a difficult thing to do
and it would not be hugely expensive, but that was the sort of thing that
worked because the GPs could talk about it. We aimed at destigmatising dementia
for the GPs.[56]
3.73
An article reporting on part of this study, which focussed on the
difficulties GPs had in communicating a diagnosis to their patient, stated:
Analysis revealed that diagnosis of dementia was inherently
challenging in the context of GP consultation, although attaining a correct
diagnosis was seen as imperative. Three main themes emerged that captured the
diagnostic challenges and associated disclosure issues: the GPs’ confidence in
having a correct diagnosis of dementia to disclose; acting in patients’ best
interests in disclosure of the diagnosis; and dealing with the negative implications
of the diagnosis.[57]
3.74
MDAG supported the call for an evidence-based training program for GPs,
containing regular assessments, random monitoring and reviews on a number of
dementia-related topics, including risk factors and prevention, diagnosis,
specific population groups, assessment tools and treatment options.[58]
3.75
The Australian Government, through the Department of Health and Ageing (DoHA),
has outlined a commitment of $27 million towards achieving timely diagnosis, as
part of the Living Longer. Living Better. reforms. This includes a
commitment to improve training and support for those who are at the frontline
of the first presentation of someone with dementia (such as GPs).[59]
3.76
Ms Rosemary Huxtable, of DoHA, explained that as part of the Living
Longer. Living Better. reforms, there was a focus on providing greater
guidance to clinicians about how an early diagnosis was an essential step in
enabling people to better understand the path they were on and access services and
medication at an earlier stage.[60]
3.77
The program of reform aims to assist primary health care providers to undertake
more timely diagnosis by providing GPs and Practice Nurses with training and
education programs and by improving support to help them better diagnose
dementia:
Funding will be provided to support general practice staff,
assist with take up of training, assist in developing appropriate referral
pathways and support General Practitioners, practice nurses and all ancillary
staff employed in the primary care setting. The program also aims to improve
understanding of the medical and social support available to improve the lives
of people with dementia and the importance of an accurate diagnosis.[61]
Committee comment
3.78
A GP, or another practitioner in a primary care setting, such as a
specialist nurse, is often the first port of call for a person who is
experiencing memory loss or symptoms of cognitive decline. Accordingly, enhancing
awareness and knowledge about dementia diagnosis, treatment and management
options within the primary health care community will undoubtedly assist in
increasing the number of people who receive a timely diagnosis of dementia. The
benefits of a person receiving a timely or early diagnosis of dementia are
detailed further in Chapter 4.
3.79
The Committee understands that the Australian Government, through the Living
Longer. Living Better. reforms, aims to provide GPs and practice nurses
with further training and education to assist them to provide a timely
diagnosis of dementia.
3.80
The Committee supports the high priority placed on education and
training for GPs regarding dementia diagnosis. In particular, the Committee
supports the roll-out of evidence-based training for GPs, such as the model
already trialled by Professor Pond and others.
3.81
The Committee will discuss training and workforce issues regarding
specialist nurses in Chapter 5.
Recommendation 2 |
|
3.82 |
The Australian Government
Department of Health and Ageing, in collaboration with the Minister’s
Dementia Advisory Group and the Royal Australian College of General
Practitioners, develop a national evidence-based dementia training program
for General Practitioners, with an emphasis on diagnosis.
Elements of the training
program should include:
n Challenging
stigma and misconceptions;
n Managing
sensitive and difficult conversations in the context of the
doctor-patient/carer relationships;
n Current
best-practice and implications of latest research; and
n Diagnosis,
care and support pathways for people with dementia, their families and/carers. |