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Monday, 15 September 2003
Page: 20060


Ms GRIERSON (5:54 PM) —It is Dementia Awareness Week, and this afternoon I had the privilege and pleasure of being part of the launch of Parliamentary Friends of Dementia, a group set up by Senator Marise Payne and me in response to the dementia epidemic now being faced by Australia. The participation by both the Prime Minster and the Leader of the Opposition in the launch demonstrated that there are many issues where our concerns are shared, irrespective of party politics. Senator Marise Payne and I were encouraged to set up such a group by the board of Alzheimer's Australia New South Wales and their CEO, Lewis Kaplan. I must register here my appreciation to the New South Wales body and particularly to Lewis Kaplan for his readiness to provide me with advice and information on dementia and Alzheimer's when, as a new member of parliament, there seemed so very much to learn.

As parliamentarians, our attention is focussed on myriad concerns to our electorate, so it is often difficult to condense all this down to a meaningful form. The support group will help our colleagues to easily access relevant information and organisations impacting on the wellbeing of those living with dementia. We hope that our support group will be a conduit for the excellent research that is now being undertaken in this once-neglected area. We also hope that our group will be an accessible first reference point for those involved with dementia research, treatment and care and for the peak organisations, in particular Alzheimer's Australia.

For too long dementia was seen as simply part of the ageing process. Memory loss and decline in mental function were considered somewhat inevitable. Fortunately, we know better today. Dementia is a health issue that demands research and understanding so that treatment and care are more appropriate and so that, hopefully, one day a cure may be found. The human and financial cost of this disease is ever-growing. More than 162,000 Australians have a diagnosis of dementia, with perhaps as many again in the early stages. Dementia affects the lives of possibly half a million Australians—those with dementia and also their families and carers.

There are more than 70 diseases that cause dementia. Alzheimer's disease—the most common cause of dementia—accounts for between 50 per cent and 70 per cent of all cases. The second most common cause is probably not known to most people—it is simply vascular disease, which obviously may be preventable. With the ageing of Australia's population, we can expect a significant increase in the number of people affected by dementia, including carers, within the next few decades. By 2041, half a million people are expected to have a diagnosis of dementia. So it is important that we get some measures in place now to avoid more human, economic and social loss to our communities.

But the real stars of today's launch were the participants brought along by Alzheimer's Australia. These people from the ACT—just like so many people in every electorate of Australia, including my electorate of Newcastle—experience dementia in their daily lives, and it is from them that we can learn so much. Today at the launch of Parliamentary Friends of Dementia, I met a mother, daughter and granddaughter from the ACT who had come along together to urge us all to do more for those living with dementia. Mary, the grandmother, had cared for her husband at home for six years. Now he is a resident in an aged care facility because Mary, a very strong woman, lost her home in last year's Canberra bushfires. In fact, she lost everything but her memories and the love of her family. I pay tribute to the `Marys' of our electorates, who are carers 24 hours a day, seven days every week. They deserve our consideration and our gratitude.

In my electorate of Newcastle, I have been part of a campaign to gain PBS recognition for anti-dementia drugs since meeting Mr Bradley, a very devoted husband whose wife has been suffering from dementia for many years. He cared for his wife at home for a long time but, sadly, Mrs Bradley is now in care. The campaign to have the testing measures changed to take into account behavioural and quantitative measures when assessing the effectiveness of drug treatment must continue. It is really important that we give credit to the opinions of families and the doctors, who do know whether drugs are being successful. If drugs are being successful, they should be continued and certainly should be available.

I would also take the opportunity to congratulate Alzheimer's Australia on their commissioning and release of the report prepared by Access Economics, entitled The dementia epidemic. For too long, dementia and all aspects of ageing have been neglected. This report highlights areas that need improvement. These areas include providing early access to affordable medication, which would improve quality of life and reduce overall health care costs in the long run; access to affordable, in-home support services; access to appropriate respite care for carers of people with dementia; education for carers; initiatives to assist carers to remain in the work force; and more appropriate services in residential aged care facilities or dementia specific care facilities. The report also suggests a future national strategy for dementia, and I urge the government and all political parties to consider that strategy and, of course, endeavour to put it in place. In that report, they say that that strategy should involve:

1) a significant investment in research for cause, prevention and care;

2) early intervention through improvement in diagnosis, and the provision of cost-effective pharmacotherapies;

3) comprehensive provision of support, education and respite services—in place in the community as far as is optimal;

4) quality residential care, appropriately financed, that are centred on the person with dementia and their family/carer; and

5) provision for special needs, including people with younger onset dementia—

who now generally go to an aged care facility—

people with behavioural and psychological symptoms of dementia ... people from culturally and linguistically diverse backgrounds, indigenous Australians and people in rural and remote areas.

I also take this opportunity to acknowledge the fine work of the Hunter Network in the Newcastle and Hunter area, which operates to support those living with dementia. They are particularly active, and have been for a long time. They run Seniors Week activities, they work with the mental health programs, they provide information stands and seminars at many events in our area, they undertake fundraising activities and, most importantly, they support individuals and families who are living with dementia. Their education programs and media information are constant, and they have successfully set up a 24-hour answering machine with the help of Hunter Health. They have a direct need right now for a computer, and I, with my colleagues in the Hunter, will be trying to find that computer they need to continue with their work. In my electorate and in that of my colleague Jill Hall, the Charlestown Alzheimer's Support Group, recently celebrated their 10th birthday—10 years of assisting families with dementia. Well done!

I also point out that individuals, as mentioned in the strategy, who have special problems must be given attention. I pay tribute to Maureen in my electorate, who copes with her husband's dementia. Unfortunately, he also suffers from war related post-traumatic stress disorder. That, of course, exacerbates the situation for her as his carer. She is determined to care for him in her home but has great difficulty in accessing sufficient and affordable home care services. She finds it unacceptable to place him in anything but her own home, because there is really not an appropriate psychogeriatric facility in easy travelling distance. From watching and speaking with families today, we know that they want to be visitors to their loved ones every day. They see just how difficult it is in aged care facilities and how short-staffed these places are, and they want to be there to make sure their family member gets the care they need and deserve.

The main message of Dementia Awareness Week this year is urging early detection and early intervention and support. Research has found that early detection, early acknowledgement that there may be a problem, is vital to achieving the best health outcomes. So I urge everyone in the community to assess their individual situation and consider whether they are responding early enough.

I also point out that the government, with the help of Alzheimer's Australia and the National Dementia Behaviour Advisory Service, has presented this year a document called ReBOC—reducing behaviours of concern. It is an excellent support document for families, giving them a hands-on guide to dealing with behaviours and responding to them. Finally, I encourage colleagues to be part of the Parliamentary Friends of Dementia. Hopefully, through that group, we can ensure every electorate office can better help their constituents to gain the early advice so critical to the management of dementia.