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Breakdown in referral pathway after dementia diagnosis, commission hears


The aged care royal commission has heard people are missing out on support and health management after being diagnosed with dementia because of a breakdown in the referral process.

Maree McCabe gives evident at the royal commission

Dementia Australian CEO Maree McCabe told the Royal Commission into Aged Care Quality and Safety on Tuesday that GPs often aren’t properly trained to pick up dementia.

And when they do, there’s a breakdown in the subsequent referral process because of lack of training and poor links to other primary health services and specialists.

“There’s no referral pathway post-diagnosis to ensure a person gets the support they need,” she said.

“That’s a real breakdown at the moment. If we had a diagnosis of another chronic condition, for example,  diabetes or  cancer, there’s actually a referral pathway. There’s a team of people that is available to you.

“You’re told, ‘right, this is what we need to manage. We need to manage your blood sugar level. We need to do regular vascular health checks, we need to ensure that you are seeing a particular allied health specialist’.

“But it doesn’t happen with dementia and it’s something that would make a significant difference for people if it did.”

Dementia Australia is one of the places people can be referred to for support, she added.

Reluctance to diagnose

Ms McCabe said GPs are usually the first point of contact for a dementia diagnosis, which can take more than three years for people over 65 even longer for younger people, but often they are ill-equipped or reluctant to do this.

“The challenge for GPs is that many of the presenting symptoms are also characteristic of other conditions,” she says.

“So if it’s a change in the person’s mood, perhaps they have become more apathetic, then it’s quite valid for a GP to look first at the person being depressed. It’s not always that they will start thinking about dementia as a diagnosis for the presenting  symptoms.

“Certainly I think there needs to be a lot more training for general practitioners around how dementia presents, the ability to diagnose and then the referral.”

Some GPS believe it’s better not to tell people they may be affected by dementia because there’s no cure or effective treatment, she said. Instead, they tend to “normalise” symptoms by putting them down to memory problems or just getting older.

“Many of the GPs that we’ve spoken with  … often they say that giving a diagnosis is not helpful for the person … so it’s better not to tell the person that they have dementia.”

However, early diagnosis can lead to better out comes, she said.

“There are lifestyle changes that we can support people with. There’s a lot of research that exercise is great for reducing our risk of getting dementia but also delaying the exacerbation of symptoms.

“Making sure that people look after their vascular health is really important – their blood pressure, their cholesterol, encouraging them to stop smoking if they smoke.

“There is a lot that we can do. We can connect them with social networks and resources, provide education for them about the challenges that they experience to ensure that they then can take control of the illness and what’s happening to them and are better equipped to deal with those challenges.”

Training the workforce

Ms McCabe also called for mandatory training for aged care workers, saying 70 per cent of the 240,000-strong workforce only hold a Certifcate 3 which doesn’t include mandatory or even optional dementia training.

Dementia Training Australia Executive Director Richard Fleming said in a statement on Wednesday that there was increasing demand for quality dementia training.

DTA is funded by the government to provide dementia education and training.

“Demand for our training is currently very high; in some areas we are more than doubling training targets, and we see this as a positive sign that things are changing for the better,” he said.

There are about 100 types of dementia and some 436,000 Australians are currently living with the condition, Ms McCabe said. That figure is expected to hit 1.1 million by 2056

She said supporting carers has to be a key element of how the nation responds to dementia.

“This is the chronic condition of the 21st century and it’s also a social issue, and one that we need to get very interested in because … one in three of us in this room will develop dementia at some point and we need to know how to best support people living with it.”

To stay up to date on the latest about the Royal Commission into Aged Care and Quality go to our special coverage. We will also be issuing regular Royal Commission Roundup reports which you’ll receive in addition to your weekly e-newsletters.

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2 Responses to Breakdown in referral pathway after dementia diagnosis, commission hears

  1. James February 21, 2019 at 4:36 pm #

    I entered the aged care work force nearly 10 years ago now at a mature age and the certificate III in aged care I completed then with sponsorship from my employer and with the elective units mandated by my employer did contain units specific to dementia care.
    In the years since I have frequently visited websites now under the umbrella of Dementia Australia or Dementia Training Australia for information including webinars. I also completed the undergraduate Diploma in Dementia Care through University of Tasmania. My Certificate III and years of experience as a personal carer have me at the top of my pay and I have been there for years and will never advance further without changing my employment options to include training for nursing or allied health or management qualifications or move out of residential aged care facility personal care work.
    I am sure my interest in the experiences of people living with dementia adds to my skills in working with those people, but because of time constraints there are still too few opportunities to apply those skills.
    The current Certificate III in Individual Support (Ageing, Home and Community) contains the unit Provide support to people living with dementia.

  2. Val Fell February 22, 2019 at 10:55 am #

    Maree McCabe is correct in saying that when a diagnosis of dementia is confirmed , there is no designated pathway to the support services that are available. When my husband was diagnosed with Alzheimers the specialist gave me an Alzheimers pamphlet and said “you should join this organisation”.

    Unfortunately this does not happen to everyone and carers are often saying “What do I do now” .Last year 393 people came to a free forum to find out “what dementia is” and “how to cope”- this demonstrates that the need for community education exists/people need help in navigating the “system”/ and informal carers need training as well as the aged care workers in -home as well as in residential facilities.

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