Dementia Spending: Missing early diagnosis and treatment planning

While everyone knows a little of the terrible impacts of dementia, apparently few people, particularly government funding providers are aware of the important role neuropsychologists can play in early diagnosis and treaTment planning, writes national Chair, of the APS College of Clinical Neuropsychologists,
Dr Fiona Bardenhagen

Nearly every Australian knows someone with a brain condition, someone affected by dementia, stroke, acquired brain injury, multiple sclerosis, alcohol-related brain injury, epilepsy, learning disabilities, autism spectrum disorders, ADHD or schizophrenia.

The World Health Organization has stated that brain diseases and disorders account for the largest proportion of medical disability in the developed world, but these conditions are still poorly understood and stigmatised in the general population.

This ignorance and stigma extends into the funding of associated health systems, where repeated attempts to get Medicare funding for specialist diagnosis of people with brain disorders have been unsuccessful – a puzzling oversight in health funding at a time when huge amounts of money have been directed at new mental health initiatives, and now at ageing and dementia.

The Gillard Government has recently announced the Living Longer. Living Better. aged care reform package of $3.7 billion over five years. This includes a Tackling Dementia strategy, worth $268.4 million over five years, to cover “from when people first approach their GP with the early signs of dementia, through to when they need a very high level of aged care”.

The package includes $23.6 million to help the estimated 16,000 people with younger onset dementia (pre-65 years of age) to access better care and support. It also offers $41.3 million over five years “to support GPs to make a more timely diagnosis of dementia... and (to) expand the scope of Dementia Behaviour Management Advisory Services to include support for people with dementia in primary care and hospitals".

While these initiatives are timely and important, the package seems to assume that GPs can diagnose every case of dementia, and seems ignorant of the contribution neuropsychologists make in complex cases and early diagnosis of dementia.

Early diagnosis allows the patient to be involved in planning their finances, accommodation, and advanced medical directives. It allows provision of education and support for families, which helps keep the person with dementia home for longer.

If diagnosis is made when insight and reasoning abilities are impaired, it is much more difficult for patients to be involved in these discussions with families.

Early detection would hopefully reduce the three-year delay between symptom onset and diagnosis, but this delay happens because in reality, the very early signs of dementia are difficult to detect for a number of reasons. Families often attribute the changes to normal ageing, GPs may be reluctant to diagnose dementia, cognitive screening measures used by GPs are insensitive to early signs of dementia, the changes are passed off as normal ageing, anxiety or depression, or because GPs are unwilling or unable to refer on for the specialist services needed to assist with diagnosis. This is particularly a problem in rural and regional centres around Australia.

In larger cities, GPs will refer on to neurologists, psychiatrists and geriatricians to assist with diagnosis. These specialists often turn to neuropsychologists for further help.

This is because neuropsychologists have unique skills and training that can help with the diagnosis, through characterising the cognitive profile, providing a baseline assessment for comparison of change over time and determining the relative contributions form complicated factors like age, prior learning and experience, ethnicity, language, mood or anxiety, medications, medical history, test-taking approaches, and psychosocial functioning to the clinical picture.

Repeat neuropsychological assessments are highly sensitive to subtle changes in cognitive function over time, which is useful for clarifying diagnosis, tracking disease progression or recovery in response to medications.

Compared to cognitive screening measures like the Folstein Mini-Mental Status Examination (MMSE), neuropsychological assessments have greater clinical utility because of their superior positive predictive value, psychometric properties, standardised development, and the availability of demographically based normative data.

My clinical experience has provided me with the opportunity to help clarify diagnosis in several people with younger-onset dementia. They had all been diagnosed with depression and were unable to continue working.

Varying doctors disagreed about their symptoms, but their cognition and behaviours continued to deteriorate, and detailed neuropsychological assessment demonstrated a clear picture of cognitive, affective and behavioural changes consistent with frontotemporal dementia.

We were able to use the assessment results to advise the families on behavioural strategies to cope with the poor insight and increasingly disinhibited behaviour.

I have seen other cases where people were being investigated for dementia, but neuropsychological assessment suggested other treatable aetiologies, like anxiety, cancer or alcohol dependence.

I have also seen cases where organic conditions were suspected, but where serial assessments or the use of personality inventories have demonstrated other explanations for symptoms, including personality disorders, mood or anxiety issues, or secondary gain.

Very few cases are clear-cut, but even in the most complex ones, a comprehensive neuropsychological assessment can help characterise a person’s cognitive strengths and weaknesses and provide very objective and salient data to assist with diagnosis.

This is because neuropsychologists use well-normed, reliable, and validated tests of cognition, and integrate the test results with historical data about the patient, behavioural observations, informant reports, and the skills and knowledge obtained through studying neuropsychology as a specialist field for at least two years at a postgraduate level. Some people think that the tests we use are the important thing, but it is the combination of excellent tests with intensive training and supervised experience that allows neuropsychologists to interpret this complicated information and draw useful conclusions, that is what makes neuropsychological assessments valuable.

The tests alone just give quantitative and qualitative data: Neuropsychologists are experts in understanding the meaning of the data in the context of patient history and presentation, neuropsychological disorders, the complex measurement properties of our tests, and knowledge of test validity and reliability, including ecological validity.

Neuropsychological assessments are often accompanied by individualised feedback and recommendations to help patients and carers to understand the person’s strengths and weaknesses, and to use that information to improve daily functioning.

Neuropsychologists aren’t just valued by neurologists in dementia diagnosis, they are also seen as key players in pre-surgical workups for epilepsy surgery, in acquired brain injury, in rehabilitation, in multiple sclerosis, in psychiatric settings, and in a myriad of paediatric conditions.

It is estimated that there are 1400 new cases of dementia in Australia each week; stroke affects over 60,000 people annually, including 12,000 aged under 55; traumatic brain injury is the leading cause of death and disability among young people in Australia, and neuropsychological status is a prominent factor in predicting functional recovery after TBI.

The numbers who need neuropsychological services are enormous, there is strong evidence for the utility of neuropsychological assessments in diagnosis and treatment planning. So why aren’t neuropsychologists getting any recognition or support from Canberra?

Maybe it’s the numbers – in March 2012, there were only 448 clinical neuropsychologists registered with the Psychologists Registration Board of Australia, compared with nearly 5000 clinical psychologists.

My colleagues are active in academic, research and clinical settings, with many senior and successful neuropsychologists, and even one set to head the International Neuropsychological Society. But maybe our lack of success is also the fragmented lobbying for brain conditions – there is no general spokesperson to advocate for all people affected.

Lobbying is broken down into conditions – like dementia, MS, epilepsy, ABI, stroke, motor neurone disease, and autism – resulting in funding successes here and there for different conditions, but no unified focus that recognises the commonalities of service need between all brain disorders.

The new Tackling Dementia Strategy is a step forward in recognising the need for a continuum of care from the very start of the disease, but it excludes people with other neurological conditions like MS or acquired brain injury, who may also have residential care needs before the age of 65.

Neuropsychologists recognise that brain conditions affect people across the lifespan, but we haven’t been successful lobbyists to date. We are busy in hospitals and clinics, getting our work done, dealing with impossible waiting lists and the knowledge of enormous unmet need for our services – maybe our clients, your neighbours, friends and family with brain disorders, need someone to make a concerted effort to represent all people with brain conditions.

Otherwise, we may continue to see funding packages for this or that disorder, without a recognition that it might be more cost-effective and clinically useful to have a health system that can rise to meet the needs of the most complex cases in an integrated fashion, whatever their diagnosis.

Australians with brain conditions have been neglected since the advent of the Better Access scheme in 2006. Neuropsychologists, doctors, and patients are frustrated that Medicare funding is available for psychological services for people with depression, anxiety, and other mental health conditions, but not for people with brain conditions.

Brain disorders affect people’s ability to function at home, at school, at work and in society as much, if not more, than depression and anxiety. Brain conditions are poorly understood, often difficult to diagnose, rarely have a cure and can be cruelly progressive.

Neuropsychologists provide an internationally-recognised specialist service that is not provided by any other health professional. In the six years that psychologists have been able to provide CBT and other focused psychological therapies to people with diagnosed mental health conditions, neuropsychologists have been turning away people with possible brain disorders who cannot afford to pay for a diagnostic assessment out of their own pockets.

This seems an unfair anomaly, given that neuropsychological assessments are covered by the DVA and third-party insurers including WorkCover, TAC, and MAIB. The DVA and third-party insurers recognise the value of neuropsychological assessment and treatment planning, so why doesn’t the government? Perhaps it’s just an oversight.

Brain disorders, like mental health conditions, affect more than one person. But people with memory, language, and other cognitive disorders often find it hard to advocate for themselves.

The stigma and lack of understanding means that families often suffer in silence, supporting the person as best they can at home, suffering social isolation and burnout from the burden of caring for an adult who is deteriorating with dementia, or who is inconceivably changed as a result of a stroke, head injury, or infection.

In the US and UK, it is estimated that 40 to 80 per cent of people with dementia are not diagnosed. The numbers are probably similar here, and while it is hoped that the new federal funding for dementia initiatives will help improve understanding of the disease and reduce stigma, the initiatives have not included any funding for improved early diagnosis through neuropsychological assessments.

It is intensely frustrating to neuropsychologists to continually miss out on the ability to provide more services in the face of an overwhelming need. A colleague in a regional centre recently wrote to me of her experience

“Being in a country area and running an eclectic practice, I get plenty of Mental Health Care plans from GPs for aged people who have adjustment problems, anxiety or depression, and it is evident from 20 paces that they are cognitively compromised.

I think the GPs have probably sensed it and they send them to me because of that sense. Early detection is not happening because I cannot test them under Medicare, and they often don’t have the financial resources or the will to undergo neuropsychological assessment.

Then I sometimes (depending on the case) do a freebie to screen for things because out of Duty of Care it would be neglectful not to. It’s a truly ridiculous situation.

Other colleagues are routinely referred patients for neuropsychological assessment under the Better Access scheme, and have to deal with annoyance from GPs and patients when told that neuropsychological assessments are not covered under the Medicare items.

Ironically, neuropsychologists are often the first health professionals to identify mood and anxiety problems in patients referred for assessment of memory or other cognitive issues.

Mood, anxiety, medications and normal ageing can all cause changes in memory, and neuropsychological assessment is able to help tease out these contributing factors.

A strong case was made for the evidence-base, value, and benefit of neuropsychological services being made in the APS’s 2012 prebudget submission, including detail on dementia on pages 4 and 5, (http://www.psychology.org.au/Assets/Files/Government-Funded-Clinical-Neuropsychological-Services-Feb2012.pdf), but when the aged care reform package was announced, neuropsychology has been left off the agenda again.

Australian neuropsychologists are frustrated and perplexed at our lack of progress since 2006, despite our repeated attempts to secure funding with the backing of consumer organisations and specialist medical colleges, including psychiatry.

We have been told that the timing isn’t right, that money isn’t being spent on health, that maybe we can get it next year - and then we keep seeing new multimillion dollar health initiatives for everything but our proposal for improved early diagnosis and intervention for people with brain disorders.

The final pages of our APS submission estimate a total annual cost of $34.14 million, but cost savings of at least $34.77 million, making the initiative cost neutral. The submission documents the evidence for the utility of neuropsychological assessments for a range of impairments across the lifespan, not just dementia.

The 448 neuropsychologists in Australia are encouraged by the money being spent on aged care and dementia, and hope that 2012 might somehow be the year that we are able to start helping more of the Australians who are struggling with undiagnosed, non-compensable, brain conditions, and that we can help bring brain disorders out of the shadows of stigma and into the light of knowledge, understanding, compassion and acceptance.

Fiona Bardenhagen, PhD MAPS, is National Chair, Tasmanian Chair, and 2012 Conference Chair of the APS College of Clinical Neuropsychologists. She currently works at the Launceston General Hospital, after 14 years at St Vincent’s Hospital Melbourne and lecturing in Clinical Neuropsychology at Victoria University. She was one of three Australians who became Fellows of the National Academy of Neuropsychologists (USA) in 2011.

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