Out of sight, out of mind

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“Depending on the patient’s symptoms, the GP needs to decide if they need a full work-up, or does it look like it’s a secondary complaint that can followed up in six or 12 months.”

Dementia Australia CEO Maree McCabe said Professor Stephan’s appointment as the inaugural Chair of Dementia presented big opportunities to improve care in dementia, which she described as the chronic disease of the 21st century.

“The creation of a Chair of Dementia presents an extraordinary opportunity – for dementia research, and for education and support for people living with dementia, their families and carers,” she said.

“We are extremely excited by the leadership and opportunities Professor Stephan brings to this role. Where similar positions have been created for other health conditions, we have seen positive advancements – and we are confident the same will occur for dementia.

Consumer input

“The insights of those living with dementia and the 1.5 million Australians involved in their care is critical to enabling and delivering better research, education and support.”

Ms McCabe said a key role of the university position was to elevate the voice of the consumer in dementia research, and ensure programs and services took into account their experiences and needs.

It was important to make people more aware that while there was nothing definitive they could to prevent dementia, there were many things that could reduce their risk.

“These include looking after your brain health, body health and heart health and it’s never too early or too late to start,” she said.

“While we cannot change getting older, genetics or family history, scientific research suggests that changing certain health and lifestyle habits may make a big difference to reducing or delaying the risk of developing dementia.”

Ms McCabe said dementia had many “touchpoints” across the healthcare system, so it was important the different parts of the system communicated with each other. Ideally an integrated healthcare system should offer more consistent experience of diagnosis, as well as access to support services across the trajectory of the disease to maintain the dignity and autonomy of the person impacted, as well as their families and carers.

And access to palliative care services to meet the needs of people with dementia also needed to be planned ahead of time.

Professor Bronwyn Myers, director of Curtin University’s enAble Institute – a research collaborative focused on helping people living with physical and mental health needs or facing the challenges of ageing – said the creation of the new position would promote a dedicated focus on dementia and research.

“Improving how we diagnose, treat and care for those living with dementia is critical to helping Australians age well,” she said.

Professor Stephan agreed that integration of care was important to ensure there was continuous care for a person, rather than receiving ad hoc, fragmented care.

“When you speak to consumer groups, they often say people go from one service to another and have to retell their story over and over again,” she said.

“Standardised education for carers is really important too, and then you can individualise it along the way. You want systems in place so that individuals are diagnosed early enough – and GPs feel competent to do that, and they’re supported to do that, with clear referral paths, so they’re working within a holistic, multidisciplinary model.”

Planning ahead

The RACGP encourages doctors to help patients with dementia understand their condition and plan for the future, including choices they might need to make about their medical care.

GPs often had a long-term relationship with their patients, especially those with serious chronic disease and life-limiting illness such as Alzheimer’s disease and other forms of dementia.

The RACGP recommends that advance care planning be incorporated into routine general practice, to plan future medical treatment for a time when patients might not be competent to make, or communicate, decisions for themselves.

Dementia Training Australia also offers resources for GPs to help in recognising, diagnosing and managing dementia, at www.dta. com.au/general-practitioners

For general information and support, the National Dementia Helpline operates the hotline 1800 100 500 around the clock.

ED: Dementia Australia’s largest fundraising event – Memory Walk and Jog – will be held in Perth on Sunday June 11 at Victoria Gardens, East Perth. It hopes to raise $1.7 million across 20 events in Australia. For details go to www.memorywalk.com.au.