4: Timeliness of dementia diagnosis
The main activity proposed to improve available data on timeliness of diagnosis is:
Another activity in this plan which may also improve data available on timeliness of diagnosis is:
- 2c: Collect data on the experiences of people with dementia and their carers (described in Dementia awareness and stigma)
Each activity description provides information on the intended outcome, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.
Activity 4a: Investigate service use and health events preceding and following a diagnosis of dementia or mild cognitive impairment (MCI)
Understanding service use and health patterns preceding and following a diagnosis of dementia is currently a key gap in Australia. This activity follows on from 3a, which aims to incorporate dementia data in enduring linked data assets to meet the needs of dementia monitoring. As part of this activity, data from the Australian Dementia Network (ADNeT) Registry can be linked to enduring linked administrative health and aged care data sets (such as the National Health Data Hub) to explore service use and health patterns preceding a diagnosis of dementia. As both data sets develop over the 10-year period, this activity could be repeated with greater data availability to explore service use and health events following a diagnosis of dementia.
| Outcome | Important insights for dementia health service and policy planning for pre- and post-diagnostic support. |
|---|---|
| Level of investment | Low |
| Timeframe | Medium |
| Responsible stakeholder | AIHW NCMD, ADNeT Registry |
| Progress | The AIHW has worked with ADNeT to link ADNeT Registry data to linked administrative health and aged care data sets in the National Health Data Hub (see activity 3a). The AIHW is using this pilot linkage to examine the patterns of service use prior to a diagnosis of dementia or mild cognitive impairment. Results are expected to be published on the AIHW website in 2027. With increasing use of genetic and biomarker testing for dementia, future work could explore emerging data sources, such as de-identified data from pathology clinics. Subject to adhering to relevant privacy provisions, such data has the potential to improve understanding of changing diagnostic pathways. |
Dementia is often diagnosed months or years after initial symptoms begin. Early symptoms of dementia may not be recognised or may be dismissed as a ‘normal’ part of ageing. The possibility of dementia may also be denied by the person experiencing symptoms or denied by their family and carers (see Dementia awareness and stigma for more detail on how these may impact timely diagnosis). Further, some people who may have symptoms do not want to be diagnosed.
When professional help is sought, obtaining an accurate dementia diagnosis involves comprehensive cognitive and medical assessments and is often a long process that can be lengthened by access issues, especially in regional and remote areas. The time taken to receive a confirmed diagnosis may vary according to the person’s symptoms and who is conducting the assessments (AIHW 2025). An initial misdiagnosis of depression, bipolar disorder or schizophrenia may occur for those with younger onset dementia and it may take a long period before a differential diagnosis of younger onset dementia is explored (Burkinshaw et al. 2022; Draper et al. 2016). In younger onset dementia, a multiyear diagnostic period has been attributed to system and policy-level barriers, including a fractured health system that is difficult to navigate and has inequitable access (Burkinshaw et al. 2022).
The Australian Dementia Network (ADNeT) Registry Annual Report publishes on average times from general practitioner (GP) referral to a memory clinic to first appointment with a diagnostic specialist service, and will collect information on when symptoms were first observed. National data are not currently available on the time taken from symptom onset to a GP presentation for investigation of cognitive impairment through to a dementia diagnosis.
Timely diagnosis of dementia is important as it may facilitate early intervention, action on modifiable risk factors, better management of symptoms, initiation of care and support services for people living with dementia and their carers, maintenance of independence, and postponement of entry into residential aged care (WHO 2022).
Timely diagnosis of mild cognitive impairment (MCI) can be challenging as it is difficult to determine how much memory impairment is ‘more than normal’ (Dementia Australia 2022) for that individual, and more difficult for those with poor support networks. MCI is usually diagnosed through similar assessments as for dementia. Studies suggest that people with MCI are more likely to develop dementia (especially Alzheimer’s disease) – but MCI does not always lead to dementia (Dementia Australia 2023).
AIHW (Australian Institute of Health and Welfare) (2025) Dementia in Australia, AIHW, Australian Government, accessed 15 October 2025.
Burkinshaw K, Tsourtos G and Cations M (2022) 'System and policy-level barriers and facilitators for timely and accurate diagnosis of young onset dementia’, International Journal of Geriatric Psychiatry, 38(1):e5859, doi:10.1002/gps.5859.
Dementia Australia (2023) Mild cognitive impairment, Dementia Australia website, accessed 2 February 2023.
Draper B, Cations M, White F, Troller J, Loy C, Brodaty H, Sachev P, Gonski P, Demirkol A, Cumming RG and Withall A (2016) 'Time to diagnosis in young‐onset dementia and its determinants: the INSPIRED study', International Journal of Geriatric Psychiatry, 31(11):1217–1224, doi:10.1002/gps.4430.
WHO (World Health Organization) (2022) A blueprint for dementia research, WHO, accessed 9 November 2022.