Lin Thorp (Tasmania, Australian Labor Party) Share this | Hansard source

Could I just concur with the remarks made by my colleague Senator Boyce. She is very correct in the sense that it was a very good inquiry. We worked collaboratively together very well and there was no difficulty at all coming to a set of recommendations that we all felt extremely comfortable with. Could I also take this opportunity to thank the secretariat for the excellent work they did in the preparation of the report and in organising the hearings et cetera.

The report recognises that, when it comes to the treatment and management of people living with dementia, we do need to do better. With our ageing population and the increasing numbers of people living with dementia, we must be sure that the care provided is the best it can be. Those living with dementia, the young and particularly the old, are amongst the most vulnerable people in our communities. We must therefore do all we can in this place to be a voice for their needs and an advocate for their rights.

The inquiry into the care and management of Australians living with dementia recognised that dementia is not a natural part of ageing. It recognised that dementia is a significant and growing element in Australia. We have more than 320,000 Australians currently living with dementia. However, every single day the illness touches many, many more. The report identified that 60 per cent of people living with dementia are women. The Department of Health and Ageing report of 2013 estimated that:

… nearly 1.5 million Australians are affected by dementia including the families and carers of people living with dementia.

The numbers therefore speak for themselves. The treatment and management of people with dementia is an issue that is too big for our nation to ignore. The estimations are particularly troubling when projections suggest that the number of Australians living with dementia will increase to 400,000 by 2020 and to almost 900,000 by 2050. Whilst age is often the biggest risk factor for dementia, there are currently an estimated 24,000 people living with dementia who are under the age of 60.

I am pleased that the inquiry placed a core focus upon assessing the needs of younger people living with the behavioural and psychiatric symptoms of dementia, who are often overlooked in political debate. It is vital that we remember and think of dementia as not just a condition which affects older people. The care needs of younger people are different and the service and care provided needs to reflect this.

In response, the report recommended an expansion to the Younger Onset Dementia Key Worker Program to provide support for all who live with dementia. The report also recommended that the funding for the Younger Onset Dementia Key Worker Program be increased and that the revised level of funding be sufficient enough to ensure that the planned review of the expanded trial has sufficient data to accurately assess the program.

Of particular importance to many people living with dementia in my home state of Tasmania is the recommendation in the report to explore options for the provision of respite in rural and remote areas. The unique symptoms of dementia and the current circumstances surrounding the limited options for appropriate care available in Australia means that family members and carers are burdened by additional strains. Dementia, after all, is more accurately thought of as an umbrella term for 'a syndrome which is associated with more than 100 different conditions which are characterised by the impairment of brain functions'.

I am pleased to speak on the tabling of this report, as it signals a first step towards identifying some of the greater issues that we in this place must recognise if we are to provide effective, appropriate and comprehensive reform for people living with dementia.

There are many significant and challenging issues for younger and older Australians living with dementia. That is why I not only welcomed but also considered it absolutely vital that the terms of reference for this inquiry examined: the scope and adequacy of the different models of community, residential and acute care for Australians living with dementia and BPSD;    the scope for improving the provision of care and management of Australians living with dementia and BPSD, such as access to appropriate respite care; and, significantly, as Senator Boyce referred to, the reduction in the use of both physical and chemical restraints on people living with dementia.

In particular, how we respond to the unwarranted and inhumane use of chemical restraints on people living with dementia is an aspect of dementia care which does require our urgent attention. Too often people with dementia are prescribed antipsychotic drugs as a first response, too often these drugs are used to chemically restrain those who experience the behavioural and psychological symptoms of dementia and too often the results are deadly or irreversible.

Whether restraints are physical such as chairs with barriers over the lap or chemical restraints such as lethal combined doses of mirtazapine and morphine, restraints rarely work to assist with the behaviour of people living with dementia. In fact, restraints can actually increase the likelihood of an incident of physical harm occurring, and if people are restrained in an immobile position for too long they can suffer from constipation, as well as pressure sores. Putting the physical impact aside, restraints also have the capacity to induce and become the cause of psychological harm as people with dementia may suffer increased levels of depression, fear and frustration. The symptoms of dementia can often be prevented and managed without the need to medically induce restraint in people. I must also note that the majority of these antipsychotic drugs are in no way intended to be used for the treatment of dementia, and people with dementia are at much higher risk of experiencing dangerous side effects.

Dementia reform makes social sense and economic sense. We have listened carefully to the stakeholders involved in the discussion, and I would like to thank the many people, particularly those in my home state of Tasmania, who contacted my office and made submissions to the inquiry. The recommendations reflect a key focus of the report, which was to assess both the Commonwealth and the state government services currently provided to those who suffer from dementia. They address the adequacy of care for people with dementia in a variety of settings, including the home, the community and acute care.

Mr Deputy President, I am aware of the time so I will prune my remarks a little, but I did want to put on the record the committee's appreciation of the evidence given to us by people from Tasmania, including Dr John Tooth. I commend to the Senate the excellent pioneering work done by Dr Tooth over 20 years ago. His work has become world renowned. In fact, he is considered an expert in this area in the United States and Japan. He was a state finalist for the Australian of the Year in 2007. He has been a pioneer for dementia care reform, advocating for a kind and humane response to treating people with dementia. He emphasises the importance of 'dementia specific' architectural design in order to create simple structures with a home-like interior. He has lectured in Japan, Canada, the United States and the United Kingdom. One way in which we can work on the model championed by Dr John Tooth is to make sure that we are educating staff to be skilled and caring. We must ensure that there are higher numbers of staff per person, and we must make a greater commitment to training and investment.

It is great to see, as you would know, Mr Deputy President, that the University of Tasmania is offering a free nine-week online course titled Understanding Dementia. It draws on the expertise of neuroscientists, clinicians and dementia care professionals. Not only is this course free; it is also offered to anyone who wishes to register for it. I understand that it is one of those rare courses where not only is there a great deal of interest when it comes to registering and starting the course but there is also an extremely high rate of completion.

At this point, I will curtail my remarks to say that, as nearly 1.5 million Australians are affected by dementia, including the families and carers of people living with dementia, please let this report be a call to action because we can and need to do better.

Question agreed to.