Dementia is one of the most significant public health challenges of this century, with its rising prevalence heavily impacting health services, aged care, and the broader community. It stands as the second-leading cause of death in Australia and the leading cause for Australian women.
Governments have responded to this crisis over the past decade with increased investments in dementia research, leading to notable advances in diagnostics and potential treatments. However, to effectively implement these biomedical advances, it’s crucial to understand Australians’ experiences of navigating dementia diagnosis and care.
A recent qualitative study by the Centre of Research Excellence in Enhanced Dementia Diagnosis (CREEDD) sheds light on these experiences. Researchers spoke with 37 people across Australia who have undergone the dementia diagnosis process. Participants included those diagnosed with dementia, individuals concerned about potential symptoms, people who had undergone genetic testing, and caregivers.
Using an arts-based method called the River of Life Storytelling, interviewees depicted their experiences as a river, sharing insights into their journeys through diagnosis and care.
Key Findings and Recommendations:
- A consistent and clear pathway to diagnosis Many participants felt uncertain about the dementia diagnosis process, which can involve various specialists such as neurologists, geriatricians, psychiatrists, and general practitioners. Iris, whose mother was diagnosed with dementia, described the process as “muddy” and confusing. The study highlights the need for a more structured and transparent pathway for diagnosis.
- Understanding tests and procedures Participants often did not understand the purpose of the numerous tests involved in diagnosing dementia, including clinical assessments, imaging, blood tests, and cognitive tests. Felix, living with dementia, found cognitive testing embarrassing and frustrating due to the lack of clarity about what the tests revealed. Better communication regarding the purpose and significance of these tests is essential.
- Support for patients and families Navigating the complex system of hospitals, aged care, and social care can be overwhelming for individuals diagnosed with dementia and their families. Loretta, a caregiver, emphasised the need for tailored information and personal guidance beyond what is available online. The study calls for a system that provides comprehensive support and resources to ease the burden on patients and their families.
The study concluded with participants expressing a strong desire for governments, organisations, and researchers to create a clearer, more supportive pathway for Australians diagnosed with dementia. As the prevalence of dementia increases, addressing these needs becomes ever more critical.
Ritchelle is a Content Producer for Healthcare Channel, Australia’s premier resource of information for healthcare.
