Online dementia management guide released to assist families

With more than 10,000 Australians under the age of 65 diagnosed with younger onset dementia, a new online guide has been developed to help families and carers identify and manage the disorder in everyday life.

The five-chapter, 38 page online booklet produced by the Prince of Wales Medical Research Institute (POWMRI), is based on 20 years of research and is designed to help those living with and exposed to people showing early onset dementia signs and those confirmed to have symptoms.

Professor John Hodges of POWMRI, who leads FRONTIER (http://www.ftdrg.org), the Frontotemporal Dementia Research Group and compiled the booklet, said research indicated that an increasing number of Australians are being identified with younger onset dementia in their forties and fifties.

Practical management covered in the booklet includes:

• Memory and other cognitive abilities.
• Sexuality and younger onset dementia.
• Employment issues.
• Driving and the law.
• Practical tips for improving everyday life.
• How is younger onset dementia diagnosed?
• Management of challenging behaviours in dementia.

Younger Onset Dementia (YOD) impacts on thousands of Australians – from the immediate family and friends to those in the community who, often by chance, have to cope with YOD sufferers.

"The booklet is a collection of information especially directed to patients and families with young onset dementia. Before this publication people would have to rely on different bits of information from different agencies, which was overwhelming and confusing," Professor Hodges said.

"It offers practical advice which is not available anywhere, much of which is specific to the families of younger patients with dementia such as the impact on teenage children.

"The booklet is very much about explaining how to identify early symptoms, understanding that dementia is not a single disorder, and providing practical advice about managing the disorder and daily life.

"It’s been written in lay terms explaining the different types of dementia, the role of genetics, how cognitive functions can be maintained and helped as the disorder begins to impact an individual and their family.

"It also has advice about important things in life like finances, legal issues, driving and the different ways to cope because people are affected differently and have different needs."

Professor Hodges said he hopes the access to information will empower the families of people with Younger Onset Dementia in several ways:

• Understanding better the condition they are dealing with;  
• Managing better the symptoms of the disease;
• Planning ahead for future changes;
•  Accessing appropriate services.

"In this way we hope to reduce levels of stress and increase the ability to cope better with this terrible condition," Professor Hodges added.

Following previews of the booklet to UK and US colleagues by Professor Hodges, it is now to be made available in both countries.

It is available for download from: http://www.powmri.edu.au

The booklet, Younger Onset Dementia – A Practical Guide, was commissioned by Alzheimer’s Australia and funded from the Federal Government through the National Dementia Support Program, administered by Alzheimer’s Australia.

(Source: Prince of Wales Medical Research Institute: August 2009)