A new project has used the journal writings of a carer to create a valuable education resource for health professionals.

The online resource, A Long Goodbye – Ed’s Story, follows the story of Ed Jones, whose late wife, Mary Jones, was diagnosed with Lewy body dementia in 2001, aged 81.

Ed’s journal is presented in its entirety and broken down into key elements with accompanying video vignettes.

Project lead Adele Baldwin, a nursing lecturer from Central Queensland University, said the resource provides a rare insight into how the words and actions of health professionals impact clients and their carers.

“The richness of learning from recipients of formal care is a unique opportunity for all health professionals working in the field,” Dr Baldwin said.

The resource is structured into eight modules covering topics such as an overview of dementia, the impact on informal carers, and advocacy and community support.

The project targets educators and students working in health and aged care, as well as the informal care workforce.

Learning from the lived experience of a carer will deepen students’ insights into different aspects of dementia care and help them better care for the carer, said Kellie Johns, a member of the project team from James Cook University.

Dr Baldwin said aged care providers were incorporating the resource into staff orientation training.

“The suite of materials will remain a living resource and be updated when required,” she said.

Access the resource here.

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