Ed’s story the catalyst for online learning resource on caring for a person with Lewy body dementia

Dementia is a leading cause of death and disability in Australia, and for people living and working in rural and remote areas, access to dementia-related information and support services remains a challenge.

Further, the reliance on family and friends as informal carers is more apparent in areas geographically isolated from major centres. It is therefore important to equip this informal workforce with relevant, reliable information to support them to fulfil their roles. The complex lives and responsibilities of carers need to be considered in all aspects of planning care for dementia sufferers. For this reason, it is also important to include health professionals and service providers in information sharing.

A project team at James Cook University, Townsville, recently launched an online suite of resources developed around older adult Ed, who made a journal of his experiences as he cared for his wife Mary who was diagnosed with Lewy body dementia. Ed and his family cared for Mary at home for a number of years before her death in 2009.

Ed’s story became the catalyst for the development of this open-access online learning resource for students in the health professions, health care providers, policy developers, and formal and informal carers. The website https://libguides.jcu.edu.au/a-long-goodbye has been designed to capture the carer’s voice throughout, while incorporating a range of activities, discussion points, readings and links to many useful online sites and resources.

This suite of free electronic resources has been designed to be an ‘organic’, easy to use repository of information, which will continue to evolve and build upon Ed’s story.

It supplements existing resources, such as the Dementia Training Australia portal https://www.dementiatrainingaustralia.com.au/ and helps to fill a gap in information about caring with someone with Lewy body dementia.