Statistics show more than 332,000 people in Australia are living with dementia and that number is forecast to rise to almost 900,000 by 2050. An Australian university is changing the way nurses, allied health professionals and even ordinary Australians view the rising tide of dementia, and how we provide dementia care, writes Karen Keast.

“Do you think you will die with dementia or of dementia?”

When Professor Andrew Robinson asks this question, most people reply ‘with dementia’.

And when he asks whether you die ‘with mesothelioma or of mesothelioma’, most people answer ‘of mesothelioma’.

And there-in lies the problem, he says.

“You die of mesothelioma - and dementia’s the same.

“If you’ve got a dementia at any time, your life is limited - you are going to die, there is no cure, there is no remission and there is no treatment and you are going to die.

“People do not understand that.”

A Professor of Aged Care Nursing at the University of Tasmania’s School of Health Sciences, Professor Robinson is a registered nurse and social science researcher.

He’s also co-director of the university’s renowned Wicking Dementia Research and Education Centre, an integrated dementia centre that combines neurosciences and social sciences research and education around dementia treatment, care and the search for a cure.

Professor Robinson says the university’s research shows half of those working in aged care don’t understand the people they care for, most who have dementia, are actually dying.

Dementia describes the symptoms of a large group of illnesses which cause a progressive decline in a person’s functioning, ranging from memory loss to decline in intellect, rationality, social skills and physical functioning.

Professor Robinson says people often ask - how can you die of dementia?

“Well your brain progressively shuts down until it can’t sustain life,” he explains.

“If you can imagine, if you do not know even a basic fact like that then any care you provide is going to be problematic.

“That’s a fundamental thing that you are going to have to take into account in the way that you configure care.

“If you don’t have that knowledge and the family members don’t have that knowledge, then you can imagine, it’s no wonder there’s a whole lot of problems.”

It’s this concept, of providing a palliative approach to care, that sits at the core of the university’s pioneering dementia programs.

Dementia education

The university last year launched Australia’s first degree in dementia care, the online Bachelor of Dementia Care, and the world’s first Massive Open Online Course (MOOC), Understanding Dementia.

The courses have proven to be a hit, with 500 people studying the bachelor degree while 9,500 people enrolled in the first MOOC and 12,000 people are now participating in the second 9-week MOOC.

The degree covers the concepts of normal ageing, diseases that cause dementia, behaviours associated with the disease, and practical strategies to care for people with dementia through case-based learning.

The MOOC, where the content is provided for free, covers three main themes, beginning with the brain and then moves on to the diseases and then the person.

Both courses have attracted health care professionals, such as nurses, allied health professionals and doctors, while the MOOC also appeals to the broader population - anyone with an interest in dementia.

Professor Robinson says many health care professionals are investing in the courses to improve their knowledge in dementia care despite a lack of specialised career pathway in the area.

“There’s not anything that is on the table now yet they are doing this because they know they need this to do their job properly,” he says.

“Both of the courses are really orientated around how do we give people with dementia the best quality of life across that trajectory of decline and inevitable death.”

Dementia projections

Every six minutes, someone in Australia is diagnosed with dementia.

Alzheimer’s Australia figures show that number is expected to grow from today’s 1700 new cases a week to 7400 new cases a week by 2050.

About 24,700 people in Australia have younger onset dementia while one in 10 people aged over 65 have dementia, and three in 10 people aged over 85 have the disease.

Dementia is listed as the third leading cause of death in Australia.

Professor Robinson believes with the numbers of people dying from dementia on the rise and the numbers of people dying from heart disease and cancers on the decline, dementia will be the biggest public health issue of the 21st century.

“There is no news on cure, there is no news on treatment, there is no news on anything,” he says.

“What we can see is these radically escalating numbers of people with dementia and because these people, as a disease progresses, progressively lose capacity to make decisions, it becomes complicated because proxy decision makers have a critical role to play.

“If you are a nurse, an allied health person, you’re a doctor - unless you work in paediatrics or obstetrics, you are going to be working with older people.

“If you’re working with older people, an increasing number of those people are going to have dementia and that is an incredibly complex condition to manage and support and it’s often done poorly.

“The evidence of that is if you’ve got dementia and you live in a residential aged care facility, 40 per cent of those people will have an unnecessary burden from intervention in the last three months of their life.

“That means they are probably going to have unnecessary pain and suffering because of unnecessary medical or nursing interventions.”

Career opportunities

Professor Robinson predicts the future holds greater employment opportunities for nurses and allied health professionals in the field of dementia care.

It’s an area in which the university is positioning itself to meet the expected rise in demand.

“We should have a whole range of sub courses around dementia but we will also have post graduate courses - we will have Graduate Certificates, Graduate Diplomas, Masters and probably a Professional Doctorate in the next couple of years in dementia,” Professor Robinson says.

“You can imagine the significance of having people who can provide high quality, efficient and effective care to people with dementia.

“They will learn all sorts of information about how to care for people with dementia in an evidence-based way.

“How to manage pain, how to communicate, behaviours of concern, how to actually support and care for people with dementia and their families,” he says.

“If they’re not thinking about it through the lens of a palliative approach, they’ll be getting it wrong.”