Maree McCabe: Dementia in Australia

With the 8th Annual National Dementia Conference fast approaching, we spoke with the interim Chief Executive Officer of Alzheimer’s Australia Maree McCabe to discuss the impact of dementia in Australia.

With more than 353,800 people living with dementia in Australia, it is currently the single greatest cause of disability in older Australians. How can we best ensure that those who have been diagnosed receive the appropriate support?

A diagnosis of dementia can come as quite a shock for some people, for others it can be a relief finally knowing what has been causing their symptoms. It can take 3-5 years for some people to receive a
diagnosis of dementia and it is certainly a challenge ensuring those who need services and support receive them as early as possible. Referral by a health practitioner to Alzheimer’s Australia is vital to ensure that those impacted have access to the information and support they need when they need this.

Alzheimer’s Australia knows with the right treatment and support you can continue to live well, in the community following a diagnosis of dementia. This is why it is vital people have access to that support in the early stages and continue to access that support as the condition progresses.

To best ensure people with a diagnosis of dementia can continue to access the support they need we must firstly improve the time it can take to receive a diagnosis and ensure there is appropriate post diagnostic support in place. That is why the Younger Onset Dementia Key Worker Program is so beneficial to those who are diagnosed with dementia under the age of 65 as the Younger Onset Dementia Key Worker can assist the person to access support and services. The same system is not in place for those diagnosed with dementia who are over the age of 65, but would make it easier for people to access support.

Community education and increasing knowledge about dementia through programs such as Alzheimer’s Australia’s Dementia Friendly Community Program also supports people living with dementia in the community. The more people know about and understand dementia the better supported people living with dementia and their carers are to continue to participate in and engage in the community and the activities that are important to them.

Both the National Dementia Helpline (1800 100 500) and Alzheimer’s Australia website are fantastic places to start looking for information, services and support.

What are the current myths surrounding dementia, and how can we best fight against these misconceptions?

Dementia remains a poorly understood condition. There are more than 130 different types of dementia, Alzheimer’s disease is the most common type accounting for around 70 percent of cases.

Some of the myths include:

• It’s a disease of old age.

Fact: 1:13 people living with dementia are under 65 years of age and there are more than 25,000 people living with Younger Onset Dementia nationally

• Once diagnosed there is nothing that can be done.

Fact: There are a number of interventions that can make a very big difference to the person diagnosed with dementia and their carer. The Your Brain Matters website can assist with information on lifestyle factors that may assist.

• People living with dementia can’t make decisions.

Fact: People living with dementia can make decisions depending on the stage of their dementia and should be encouraged and supported to make decisions

• Dementia isn’t life threatening

Fact: Dementia is a disease of the brain and the second leading cause of death in Australia after heart disease. Without a significant medical breakthrough dementia will be affect more than 900,000 Australians by 2050

Undoubtedly one of the biggest myths surrounding dementia is that there is nothing that can be done to reduce your risk. The research has shown there are things you can do to reduce your risk of dementia. Alzheimer’s Australia’s Your Brain Matters program has five simple steps to reduce your risk of dementia. We know what’s good for the heart is good for the brain, so making sure you look after your heart is step one. By looking after your heart we mean keeping high blood pressure in check, taking control of high cholesterol, type 2 diabetes and obesity.

Other steps include being physically active, mentally challenging your brain by learning something new, following a diet low in saturated and trans fats – such as the Mediterranean diet and maintaining social engagement can all work toward reducing the risk of dementia.

In creating dementia-friendly communities, where people living with dementia are supported and empowered to continue to live their pre-diagnosis lives, learning more about the condition and treating people with dementia with the respect and dignity we would like for ourselves misconceptions about dementia and stigma will be broken-down.

At the upcoming National Dementia Conference, you plan to discuss how to navigate the system. Can you tell me about this?

With the introduction of Consumer Directed Care (CDC) and as the Younger Onset Dementia Key Worker Program transitions to the National Disability Insurance Scheme (NDIS) we’re seeing a lot of change in the aged and disability sectors, the introduction of My Aged Care is another example.

When dealing with a complex, neurological condition such as dementia it is important vulnerable people don’t slip through the gaps, miss out on the services they need or are disadvantaged by any changes or new systems introduced.

We must ensure that there are appropriate systems in place to assist people with a cognitive impairment to understand the new changes, to find and access the services they require.

The information provided about services and costs must be transparent, easy to locate and understand. Independent quality measures need to be in place in residential aged care, so anyone requiring care can make an informed choice. It is about protecting and empowering consumers to be able to make the best choices around their future care. Alzheimer’s Australia’s role as the National Peak Body is to advocate on behalf of consumers to ensure no one with dementia slips through the gaps and changes do not adversely impact people living with dementia and their carers or families.

Can you tell me about how you became involved in Alzheimer’s Australia?

Prior to commencing the role of CEO of Alzheimer’s Australia Vic 2010 I held a number of senior executive positions across the mental health and aged care sectors and with a Post Graduate Diploma in Mental Health Nursing the role at Alzheimer’s Australia Vic was an exciting opportunity to grow and expand dementia services in Victoria. My father died with Dementia with Lewy Bodies shortly before I took on the role at Alzheimer’s Australia Vic so I have a personal passion to work to make a difference to the lives of all people impacted by dementia.

More recently, I have taken up the role of Alzheimer’s Australia Interim National CEO. This is a unique opportunity to progress the National agenda and advocate for people living with dementia, their carers and family.

Are there any presentations at the National Dementia Conference that you are looking forward to seeing and why?

I am looking forward to all of the presentations.  One of the great things about conferences is the opportunity to learn new things and meet new people. Some of the best learnings come from our consumers. It is inspiring to network with others who are passionate about new initiatives and providing great care and services across the sector.

Maree McCabe will be presenting on navigating the system at the upcoming 8th Annual National Dementia Conference. For more information, including our current agenda, please head to our website.