Missed signs and long waits slowing dementia diagnoses: AIHW

Dementia diagnoses are being slowed by missed symptoms and long wait times, according to new Australian Institute of Health and Welfare (AIHW) research.
 
That is among the findings from the AIHW’s new Living with Dementia Survey, which was released at the start of Dementia Action Week on 21 September.
 
With insights from 266 people living with dementia and 1648 carers, it highlights barriers to diagnosis of the disease, such as symptoms being linked to other causes and concerns about the consequences of a positive diagnosis.
 
Respondents also cited a reluctance to acknowledge the possibility of the condition, which is now the leading cause of death in Australia.
 
While delays in being tested and seeing a specialist was the most commonly cited barrier at 22%, misattribution of symptoms by GPs was next (18%), followed by the high cost of health appointments.
 
Around 61% of people living with dementia reported receiving a diagnosis within three years of first noticing symptom, with 43% of women and 33% of men saying they were diagnosed in less than a year.
 
More than a quarter said they waited for more than a year after symptoms began before they sought advice from a health professional.
 
One aspect of the report that stood out for Dr Stephanie Daly, Chair of RACGP Specific Interests Dementia, is that more than three in five of those surveyed said a diagnosis helped them understand their symptoms, while more than half felt it supported planning and decision-making as well as access to support.
 
She said ‘all too often’ health professionals are fearful of making a diagnosis due to concerns over whether it is correct, or because they may feel that nothing can be done.
 
‘GPs should focus on recognising that a diagnosis is important and empowering,’ she told newsGP.
 
‘It not only provides information but also importantly improves outcomes by preventing unavoidable hospital admissions.’
 
She said that while a diagnosis is life-changing, it should not be avoided due to concerns about the impact.
 
‘We wouldn’t accept that for cancer, motor neurone disease, MS and other life-changing diagnoses so why do we continue to accept this in dementia?’ she said.
 
The AIHW report states that several participants ‘had early symptoms attributed to mental health issues or other health conditions, stress, being busy, or found that health professionals (incorrectly) considered the symptoms to be a normal part of ageing’.
 
Dr Daly stressed that the disease ‘is not an inevitable part of ageing’.
 
‘We should be actively investigating cognitive symptoms not only because they could be symptoms of dementia but also to exclude other causes such as brain tumours or other chronic diseases,’ she said.
 
‘There are treatments that work both pharmacological and non-pharmacological along with 14 factors that can improve our brain health.
 
‘Even advice on brain health in midlife can be important in helping people understand symptoms and how they can reduce their risk.’
 
The survey of carers also highlights the significant impact dementia has on people supporting those with the disease.
 
More than 80% of primary carers reported giving at least 40 hours of care each week, with many saying they did not have enough time for self-care or social activities.
 
Meanwhile, the RACGP called on governments to implement the National Dementia Action Plan, with better integration for brain health into primary care.
 
RACGP President Dr Michael Wright said general practice remains key to improving Australia’s response.
 
‘For many Australians, their GP is the first person they turn to when they notice changes in their memory, but we need the right support to provide patients with the best possible ongoing care even before this happens,’ he said.
 
‘Supporting general practice to provide preventive care and early intervention will help Australians live healthier for longer and reduce the growing burden of dementia. It will also help to reduce pressure on hospitals and aged care services.
 
‘We need sustained investment in general practice so GPs can deliver the best possible care for the growing number of Australians living with dementia.’
 
Dr Daly encouraged GPs to use Dementia Action Week to talk about the disease with patients, colleagues and families ‘as dementia touches everyone in some way’.
 
Around 459,000 Australians are estimated to be living with dementia, according to the AIHW, with that number expected to rise to more than one million over the next 35 years.
 
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