Online book helps explain devastating dementia



A unique variation of dementia that plagued late comedian Robin Williams will be highlighted in a new interactive educational resource produced by James Cook University.

A Long Goodbye: Ed and Mary’s Journey with Lewy Body DementiaCenters on the touching diary of a husband, Ed, documenting the rapid mental and physical decline of his wife Mary after being diagnosed with Lewy Body Dementia (LBD).

Launched on Wednesday, Ed’s diary was originally shared by Ed with former JCU nursing professor Dr Adele Baldwin, who recognized its value as an authentic educational resource.

A grant enabled the development of an open access website which has now been transformed into a comprehensive open manual that can be read and downloaded free of charge.

It is the first book to be launched on the JCU Library Pressbooks platform, a key part of the library’s ongoing open education initiative, bringing open educational resources not only to JCU students but to a much larger audience.

“The original purpose of Ed’s story was for it to be used as a suite of electronic resources to ‘train the trainer’ so to speak,” Dr Baldwin said.

“But it also provides, with the help of Integrated Learning Consultant Kellie Johns, some great ideas on educational strategies for teaching students how to care for someone with dementia.

“It’s about using this real story, this real story from Ed.”

While Ed and Mary have since died, project leader Dr Baldwin said she hopes their legacy will continue through the new resource.

“My point is that we need to make senior care attractive because we need our best and brightest in the business,” Dr Baldwin said.

“Elderly care residents are the most vulnerable people in society and their numbers are increasing statistically. “

In addition to the filmed video interviews with Ed, the eBook features further updates, including a comprehensive overview of the LBD provided by JCU speaker and clinical educator in exercise physiology, Dr. Michael Inskip and references to the recent Royal Commission on the Quality and Safety of Elderly Care.

Dr Inskip said that LBD actually refers to two related types of dementia – the first, Lewy Body Dementia (DLB) is diagnosed if the dementia occurs within one year of the onset of parkinsonism symptoms such as than slowness of movement, tremors and muscle stiffness.

Conversely, the second presentation, Parkinson’s disease dementia (PDD), is diagnosed when a person has established Parkinson’s disease for more than a year before developing dementia.

“Lewy body dementia is a condition that people don’t tend to hear about until a loved one is diagnosed,” said Dr Inskip, adding that his grandmother had been diagnosed with the disease more than ten years ago, which subsequently inspired him to embark on this disease. search field.

“It’s a type of dementia that not only affects cognition but also includes motor, psychiatric and autonomic impairments, including signs and symptoms such as fluctuating attention, depression, stiff muscles and tremors, slowness of movement and postural hypotension which can lead to dizziness when people stand up.

“Additionally, a common feature of Lewy body dementia is the prominent and well-formed visual hallucinations and delusions that people with the disease experience, which can include animals and children, and at times be disturbing or threatening. “

Dr Baldwin, who now works at CQ University, said the open manual would be a “living document” that could be updated as new information became available.

JCU Library Associate Director Bronwyn Mathiesen and Librarians Stephen Anderson, Dr Deborah King, Alice Luetchford and Sharon Bryan were instrumental in the original project and the transition to the new open textbook platform.

The eBook launch coincides with Dementia Action Week 2021, which aims to demonstrate that many people with dementia can continue to live well for many years after their diagnosis.

Ed and Mary’s journey is particularly timely this year, with Dementia Week of Action focusing on supporting and celebrating caregivers of people living with dementia.

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