Research indicates that approximately half of people living with dementia do not have a formal diagnosis resulting in missed opportunities for treatment, rehabilitation, and support.
The Face Dementia Campaign aims to encourage a timely diagnosis of dementia.
Early in the project, co-design participants who had previously sought a dementia diagnosis, suggested a checklist of dementia symptoms is useful to support conversations about potential dementia changes. However, they felt available checklists were too focussed on memory loss.
To address this gap, a search of academic and grey literature was undertaken to identify existing dementia symptom checklists. Sixteen checklists met inclusion criteria. Items within these checklists were mapped against the domains in the DSM-5.
After further review, the project team agreed that the Alzheimer’s Society (UK) checklist was the most comprehensive, however, it needed adaptation to the Australian context. Health professionals specialising in dementia care reviewed this checklist, suggesting modifications including changing items and revising language and tone. The checklist was then assessed using SHeLL Editor and modified to improve readability.
Consumer testing resulted in further minor modifications. The consumer group agreed that the content of this checklist was consistent with their own early concerns and would have assisted them with seeking a timely diagnosis.
The final checklist is being distributed as a printed resource to complement community interactions during the public health campaign and can also be downloaded from the Face Dementia website. Between Sept 2023 and April 2024, there has been >2500 website downloads in Australia, confirming its utility.