Understanding Lewy body disease
Alzheimer’s Australia has launched a special resource for people with Lewy body disease and those who care for them. The Lewy Body Disease Resource Kit, which includes a DVD and a series of 10 Help Sheets, has been developed through detailed research and consultation with people living with Lewy body disease.
Alzheimer’s Australia has launched a special resource for people with Lewy body disease and those who care for them. The Lewy Body Disease Resource Kit, which includes a DVD and a series of 10 Help Sheets, has been developed through detailed research and consultation with people living with Lewy body disease.
It includes experiences of patients and their family, and provides information about the disease on topics like cognitive and physical changes in sufferers but also information for family, carers and healthcare professionals.
“The kit was developed in direct response to our consumer’s needs,” Alzheimer’s Australia chief executive officer, Glenn Rees, said. “There is very little easily available information about Lewy body disease and we therefore saw a real need to develop a resource to provide vital support to those affected by the disease across the country,” Mr Rees said.
Lewy body disease is a form of dementia, sharing many similarities with Alzheimer’s disease. It affects over 100,000 Australians and involves changes in movement, thinking abilities and behaviour. It differs from Alzheimer’s disease in that the progression of the disease is usually more rapid. However, like Alzheimer’s disease it is a degenerative condition, eventually leading to complete dependence.
Robin Groves was diagnosed with Lewy body disease in 2006. He and his wife Lis agreed to feature in the DVD that forms an essential part of the Lewy Body Disease Resource Kit. “The first thing that really gave me an indication that something was going wrong was when I was playing the piano and I realised that I couldn’t read the music,” Robin said.
“I found this strange as I have played music since the age of five,’ he continued. “I made an appointment with a neurologist and from there saw a number of specialists, all of whom were hesitant to give a definitive diagnosis. It became clear that this is a condition about which very little is known.
“People want to know how the illness will manifest itself and what the progression will be so they can plan their lives, but currently that kind of information is very difficult to find,” Lis Groves said.
Alzheimer’s Australia Vic chief medical adviser Associate Professor Michael Woodward refers to the resource kit as “an essential resource for those dealing with Lewy body disease. The information is clear, comprehensive and touching. Nowhere else will those with the illness, their families and friends, healthcare professionals and workers find such concentrated knowledge and shared experience.”
The Lewy Body Disease Helpsheets are available here. For enquiries about the complete Kit email diana.fayle@alzheimers.org.au or call 03 9816 5792.
