Vital new service for people living with dementia

A new Australian service has been launched to help the hundreds of thousands of families living with dementia by providing tailored information and personal on-line support from qualified doctors and others who are experiencing similar issues.

DementiaNet is the first Australian website to offer interactive support for families affected by dementia and has been launched by 51-year old barrister Michael d'Arbon, who has Alzheimer's Disease.

Mr d'Arbon, his wife Jane and their family are coming to terms with the disease which has forced Mr d'Arbon to give up a successful career in criminal law.

Launching DementiaNet on behalf of the Lundbeck Institute, Mrs d'Arbon said, "When we got the diagnosis, we did what any one would do, we got on the Web. I stopped reading because it was all so impersonal and scientific but my oldest daughter stayed on. She had tears rolling down her face and I begged her to shut it down. If only we had DementiaNet then with the simple facts, clearly stated and the opportunity to ask about things that we were so concerned about it would have been so fantastic."

Mr d'Arbon said, "If this website had been available when I was first diagnosed I think it would have been a great help and avoided the trauma of imagining the worst. It should be the first reference point for every doctor, patient and relatives".

Geriatrician Associate Professor Sue Kurrle, Rehab & Aged Care Service, Hornsby Ku-Ring-Gai Hospital, said, "DementiaNet gives people the opportunity to access diaries, a chat room, a gallery and a debate area. It's practical and hands-on and gives real support. The aim is to facilitate communication and sharing between patients and carers and to foster the support that is needed in this often-isolating illness. DementiaNet is like nothing else available. It is going to be an extra resource for people who are internet-savvy and most people are these days."

A feature of the site is a letterbox where people can anonymously submit questions to a qualified medical panel. The emphasis of this letterbox is to provide balanced medical information and support, not online treatment. The diaries allow people to share experiences and lessen the burden of isolation they may feel.

During its trial phase typical questions on DementiaNet included:

Is dementia hereditary?

What can we do about it in terms of treatment and other options?

Can I slow it down?

The launch of the site follows consultation with leading Australian psychogeriatricians, GPs and carers. The initiative is supported by Alzheimer's Australia.

More than 200 000 Australians have been diagnosed with dementia and the time bomb of the ageing population means that these numbers will more than double within 45-years. Millions more will be affected because they will be caring for a person with dementia. A recent Access Economics Report warned Australia is on the brink of a dementia epidemic.

Prof Henry Brodaty, Professor of Psychogeriatrics, University of New South Wales and Director, Aged Care Psychiatry and Head of the Memory Disorders Clinic, Prince of Wales Hospital said, "There is a need for more help for people with dementia and their families and DementiaNet is a welcome resource. Carers can read about what to look out for in a relative who is developing symptoms of dementia and obtain advice on how to help throughout the course of the illness".

Associate Professor Michael Woodward, Heidelberg Repatriation Hospital, Austin Health, said, "This site is a very useful addition to the vital sources of information for those with dementia. It is practical and easy to access, and the information is pitched at the right level for carers, those with dementia and health professionals. As a dementia expert, I have already accessed it and referred my patients to the site."

A recent survey conducted by the Alzheimer's Associations of Europe highlighted the dramatic impact of dementia on carers. It found that most were spending more than 10 hours a day looking after a relative and had insufficient information resources.

DementiaNet was developed by The Lundbeck Institute which is a not for profit education forum set up by H. Lundbeck A/S to advance knowledge and discussion on psychiatric and neurological diseases.

About Dementia

Dementia is the term used to describe the symptoms of a large group of illnesses, which cause a progressive decline in a person's mental functioning.

It is a broad term, which describes a loss of memory, intellect, rationality, social skills and normal emotional reactions.

Dementia is widespread and can affect younger people; currently over 9 600 Australians under the age of 65 have early onset dementia. Dementia may be caused by up to 100 different diseases, and there are many other diseases that may have symptoms similar to dementia. Thus, if you have symptoms that are similar to dementia, it is important to be examined properly. It is important to remember that everyone with dementia can be treated, although few can be cured.Dementia has been called 'the relatives' disease'. This is because the illness usually affects the entire family and social circle.

www.dementianet.com.au