Australian healthcare systems and models of care for dementia currently have limited attention directed towards post-diagnosis follow-up. This study examined post-diagnosis experiences of dementia in Australia, and identified priorities and supports that can enable people with dementia and their families to live well with this complex condition.

Semi-structured interviews (33) were conducted with 37 people who have experienced the dementia diagnosis process in Australia. Interviews explored diagnosis journeys through River of Life storytelling and diagrams. The Three Perspectives of Human Malady theory guided data analysis, conceptualising dementia as a disease, an illness, and a sickness.

Majority of participants reported their post-diagnosis experiences in navigating the healthcare system and accessing supports for dementia as difficult. For many, the post-diagnosis phase was more difficult than the dementia diagnosis process. Participants described that much of the healthcare system is oriented towards disease and medical perspectives of dementia, including medical appointments, testing, results and getting a diagnosis. However, it was the illness and sickness perspectives of dementia, encompassing a person feels about themselves and lives within their community, that were pivotal to their experience of dementia. Many reported a severe lack of recognition, services and structures addressing the social, emotional and wellbeing perspectives of dementia.

The diagnosis of dementia is not the end of a person’s complex and challenging healthcare journey. As this research shows, it is only the beginning. Understanding the experience of dementia as a disease, illness, and sickness will help tailor models of care to meet patient and family needs.