Often the lessons to be learned from recipients of care are overshadowed by more formal learning strategies.  Ed’s story is one of compassion, strength, laughter, loyalty and loss.  It chronicles the journey of caring for a loved one diagnosed with dementia with Lewy bodies.  Unfortunately, diagnosis of any form of dementia is more frequent in our communities than many of us are aware.  Very few people, however, journal their story as their lives, and that of those around them, change. Thus, the richness of learning from recipients of formal care and support is a unique opportunity for all health professionals working in dementia care. Further, the raw, honest insights in Ed’s story are a valuable learning tool for any health professional from any discipline, particularly those who are still learning their craft.  Sometimes the impact our words and actions have on patients and families is not apparent, and Ed’s reflections allow us a glimpse into how the actions and words affect them, both positively and negatively.

Ed’s journal has been presented in two ways.  One, as a whole journal, presented verbatim that allows the reader to follow the story from start to finish.  Secondly, the contents of the journal are presented in context with the key elements for essential knowledge about caring for someone with dementia.  To complement the text, video vignettes where Ed talks about his and Mary’s experiences, are linked to each theme.  There are also further links to external sites for support groups, government and non-government agencies related to dementia care.  Those involved in Ed and Mary’s journey, as well as the project team, and other professionals the team encountered along the way, were invited to share their reflections, some of which have been made available as part of this resource.

This ebook built around Ed’s journal, chronicles Ed’s experiences as a carer following Mary’s diagnosis with Lewy body dementia.  Students and experienced health professionals are rarely afforded an insight into how their words and actions are interpreted by, and impact, patients, families and friends.  Formal and informal carers also seek better understanding of dementia types, causative factors, symptoms, strategies to assist, services available, without necessarily having access to reliable resources.  To meet the needs of such a diverse audience, Ed’s story is freely available and accessible to any community member who seeks information about dementia care.  As a first edition ebook, A Long Goodbye: Ed and Mary’s Journey with Lewy Body Dementia will undergo ongoing review and updating of content to ensure accuracy, and make sure that the content reflects best practice.

Ed’s story provides information and education resources related to dementia care.  Although specifically focusing on Lewy body dementia, the resources have been developed to be transferable to caring for people with any type of dementia. The resources are suitable for use by students in the health professions, educators, formal and informal carers.

Each section links to Ed’s journal, some with video vignettes, provides some background knowledge and includes teaching strategies for educators. The activities and resources for each section are suggestions.

Module 1 provides an overview of dementia and the burden of disease in the Australian context.

Module 2 describes the experiences of patients, carers, family and friends.

Module 3 specifically outlines issues pertaining to carers.

Module 4 provides links and resources to access services, including emergency services.

Module 5 gives users the opportunity to read Ed’s journal in its entirety, read the reflections of family, friends and carers of people with dementia, and the reflections from the project team.

Module 6 has a list of recommended readings.

Module 7 gives users the opportunity to watch all of the video vignettes in one place.