Online book helps explain devastating dementia condition

A unique variant of dementia that affected the late comedian Robin Williams will be highlighted in a new interactive teaching resource produced by James Cook University.

A long goodbye: Ed and Mary’s Journey with Lewy body dementia” is centred around the touching journal of a husband, Ed, documenting his wife Mary’s rapid mental and physical decline after being diagnosed with Lewy body dementia (LBD).

Launched on Wednesday, Ed’s personal journal was originally shared by Ed with former JCU nursing lecturer Dr Adele Baldwin, who recognised its value as an authentic teaching resource.

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

It is the first book to be launched on JCU Library’s Pressbooks platform, a key element in the Library’s ongoing Open Education Initiative, bringing open educational resources not only to JCU students but to a much wider audience.

“The original purpose for 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, thanks to the help of Integrated Learning Adviser Kellie Johns, some really good insights into education strategies to teach students about how to care for someone with dementia.

“It’s about using that real story, that real-life narrative of Ed’s.”

While Ed and Mary have since passed away, Dr Baldwin, the project lead, said she hoped their legacy would continue through the new resource.

“My view is we need to make aged care appealing because we need our best and brightest in the sector,” Dr Baldwin said.

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

In addition to video interviews filmed with Ed, the eBook features new updates, including a thorough overview of LBD provided by JCU lecturer and clinical educator in Exercise Physiology Dr Michael Inskip and references to the recent Royal Commission into Aged Care Quality and Safety.

Dr Inskip said LBD actually refers to two related types of dementia– the first, dementia with Lewy bodies (DLB) is diagnosed if dementia occurs within one year of the onset of symptoms of parkinsonism such as slowness of movement, tremor and muscle rigidity.

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

“Lewy body dementia is a condition that people do not tend to hear about until a loved one receives a diagnosis,” Dr Inskip said, adding that his grandmother was diagnosed with the condition over ten years ago, which subsequently inspired him to go into this field of research.

“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, rigid muscles and tremor, 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 condition experience, which can include animals and children, and at times be troubling or threatening.”

Dr Baldwin, who now works at CQ University, said the open textbook 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’s launch coincides with Dementia Action Week 2021, which aims to demonstrate that many people living with dementia can continue to live well for many years after their diagnosis.

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

/Public Release. This material comes from the originating organization/author(s)and may be of a point-in-time nature, edited for clarity, style and length. The views and opinions expressed are those of the author(s).View in full here.