Australia does not ‘meet the human rights’ of people with dementia

Evelyn Lewin

2/02/2021 5:08:26 PM

GPs are ideally placed to address the challenges of caring for people with dementia – but systemic change is necessary too.

Distressed older woman looking out the window.
Dementia is the leading cause of disability and second leading cause of death in Australians aged over 65.

‘It is a fundamental human rights issue. People deserve better.’
That is Professor Dimity Pond, a GP with a special interest in aged care.
She is talking to newsGP about a new opinion piece on dementia care in Australia, penned by members of the National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia, and published in the latest issue of the Medical Journal of Australia (MJA).
In it, the authors note dementia is the leading cause of disability, the second leading cause of death in Australians aged over 65, and the leading cause of death in women in Australia.
They note the condition has a significant financial cost and estimate that in 2020 Australia will spend $8.1 billion on healthcare for people with dementia, as well as $3.8 billion on social services, and a further $6.1 billion in lost productivity and earnings.
Worse, the authors believe Australia ‘does not currently meet the human rights of people with dementia to timely and accessible health services of appropriate quality or to participation in healthcare decisions’.
‘The right to quality healthcare is affected by the variable delivery of best-practice dementia care by memory clinics, acute hospitals, primary care, and community and residential aged care, perhaps because the role of each of these is unclear,’ they write.
Professor Pond supports this statement.
‘There is a really strong argument to say that that’s true,’ she said. ‘We’ve got a very fragmented system. At every step along the way, there are difficulties.’
Maree McCabe, CEO of Dementia Australia, agrees the views reflected in the MJA article accurately represent the current state of care for Australian patients living with dementia.
‘It’s fairly on the money,’ she told newsGP. ‘This is the feedback that people living with dementia give us.’
Ms McCabe said challenges begin when making a diagnosis.
She says when a patient aged less than 65 presents with changes in mood and behaviour, clinicians will ‘probably think depression before dementia’.
‘It’s not that they don’t work to get the right diagnosis,’ she said.
‘It’s [just] difficult to determine what the diagnosis is, given that many of the symptoms of dementia are actually present as part of the symptomatology for other illnesses as well.’
Professor Pond echoes that sentiment.
‘I’ve been working in this space for many years with GPs and it’s just not an easy diagnosis to make,’ she said.
‘If, as GPs, we’re going to make the diagnose ourselves, we need more skills, and we need time.
‘To do a proper dementia assessment takes far longer than the 15-minute standard consultation. It just takes time. You can’t get through all the material in 15 minutes. It’s not possible.’
Professor Pond says clinicians often think that such assessments can take place during the 75+ health assessment.
‘But there’s a whole lot of other things you have to do in that and a longer cognitive function test – longer than a screening test – would take the whole time to administer,’ she said.
Referring patients to appropriate services, such as memory clinics, is not necessarily the answer either.
For example, Professor Pond says there is currently a three-month wait for patients to be assessed at her local memory clinic in Newcastle.
‘People with cognitive impairments don’t remember to go [to their appointment] three months down the track,’ she said.
‘It’s hard enough to get them to remember to take their referral form with them, so that’s a real barrier.’
One potential solution, Professor Pond says, could be assessing patients for dementia by nurse practitioners in a mobile memory clinic embedded within general practice.
Professor Pond led a study investigating this idea, published on 1 February in the Australian Journal of Primary Health.
In the study, conducted from mid-2013 to mid-2014, GPs referred 102 patients to the clinic, with the nurse practitioner conducting assessments on 77 of those patients in their homes.
Overall, the authors found there was a ‘strong interest’ in this model by general practice staff and that the assessment and care provided by the nurse practitioner was found to be ‘highly acceptable’ by both patients and their carers.
Professor Pond calls this kind of assessment model ‘the gold standard’ for assessing dementia.
However, she says that even during the time of the study, demand for such services far outstripped supply.
‘We got so many referrals in the year that we couldn’t do all the assessments,’ she said.
While assessing a patient for dementia is challenging, it is also difficult to access appropriate care once a diagnosis has been made.
To overcome this, Ms McCabe says it is vital that all aged care workers are equipped with a good understanding of dementia.
‘It’s got to be part of their basic training,’ she said.
Last year the Royal Commission into Aged Care Quality and Safety released a report saying more than two thirds (68%) of aged care residents have moderate to severe cognitive impairment.
This statistic, Ms McCabe said, is ‘absolutely telling’.
‘What it really emphasises is how important it is that we equip staff with the knowledge and skills that they need to support people living with dementia,’ she said.

Dementia Australia CEO Maree McCabe says it is vital for all workers in aged care to have a fundamental understanding of dementia.
Professor Pond agrees it is vital to ensure the aged care workforce is adequately trained to meet the needs of patients living with dementia, but she admits it is not an easy task.
‘It’s challenging – but it’s not beyond a country like Australia,’ she said. ‘I think we should be able to manage it, but we need to prioritise it.’
Accessing care is another issue many patients face, says Professor Pond.
Compounding these issues is the fact that Australia’s last National Framework for Action on Dementia (2015–2019) has now lapsed.
To address this, the authors of the MJA piece have called for the development of a new National Framework including ‘the development of a model of service delivery that considers accessible pathways to diagnosis, and effective and seamless ongoing support of health and wellbeing throughout the course of dementia’.
Ms McCabe says Dementia Australia is working with the government to achieve this, and that they are awaiting the final report of the aged care royal commission first.
‘That’s the final piece that will help inform what our national strategy will be from hereon in,’ she said.
As part of the new strategy, the MJA authors are calling for dementia to be ‘recognised as a disability, consistent with the World Health Organization Convention on the Rights of Persons with Disabilities’.
Ms McCabe says it is ‘absolutely essential’ to recognise that dementia is a disability.
‘People with dementia are often discriminated against unthinkingly,’ she said.
For example, Ms McCabe says people who have other illnesses, such as cancer, often do not struggle to access opportunities such as rehabilitation.
‘But if you’re living with dementia, none of that is available,’ she said.
Ms McCabe says the way healthcare professionals address issues involving a patient with dementia can also be problematic.
‘People living with dementia share this with us, that when they are with care partners health practitioners speak to their care partners and not to them [about] decision making [and the like], and these are the things that are so important to people living with dementia,’ she said.
Professor Pond believes it is essential to involve patients with dementia in their own care plans.
‘This is the whole human rights aspect,’ she said.
‘Work with them to see what they want to do, [as well as] have a conversation with the family carer.
‘That’s absolutely vital, so that everyone’s on the same page about what services are going to come in and what you expect from those services.
‘There are ways around it that don’t even involve services but [they] do involve thinking and talking, and primary care is the ideal place for that.’
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