4: Timeliness of dementia diagnosis
Dementia is often diagnosed months or years after initial symptoms present. Early symptoms of dementia may not be recognised or are 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.
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 2023). An initial misdiagnosis of depression, bipolar disorder or schizophrenia may occur for those with younger onset dementia and 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) Clinical Quality Registry Annual Report publishes on average times from general practitioner (GP) referral to a memory clinic to a dementia diagnosis, 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 2022).
Proposed data improvement activities
There are 2 main activities proposed to improve available data on timeliness diagnosis. These include activities to:
- collect data on the experiences of people with dementia and their carers (Activity 2c described already under Dementia awareness and stigma)
- link dementia onset data (collected through lived experience data collection) to clinical records containing dementia diagnosis data information to calculate timeliness of diagnosis.
Each activity description provides information on the intended outcome, priority rating, level of investment required, timeframe for completion of the activity and who is responsible for undertaking the activity.
This activity involves the linkage of data on dementia onset (collected through lived experience data collection) to clinical records that contain date of dementia diagnosis, and subsequent analysis of the linked data to estimate timeliness of diagnosis. Initial linkage will not be nationally representative as there are no comprehensive national data containing date of dementia diagnosis. Consideration should be made over time on whether the lived experience data collection could be incorporated into enduring data linkages planned under Activity 3a.
Outcome: Data available on time between onset of dementia symptoms and diagnosis made; subsequent data collections and linkages would allow examination of trends in time to diagnosis, over time.
|Priority Group Data
- Alignment: high importance for multiple areas of National Dementia Action Plan (NDAP) objective 3
- Foundational data: method development
- Dependencies: dependent on the collection of dementia onset data
- Priority group reporting: likely – if sufficient data on priority groups in both data collections
Level of investment: Low
Timeframe: Medium term (2–6 years) for incorporation of single data set and analysis; Long term (6+ years) for subsequent analysis of changes in timeliness of diagnosis over time
Responsible stakeholder: Academic researchers; AIHW National Centre for Monitoring Dementia (for data linkage).
AIHW (Australian Institute of Health and Welfare) (2023) Dementia in Australia, AIHW, Australian Government, accessed 23 February 2023.
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, e5859, doi:10.1002/gps.5859.
Dementia Australia (2022) Mild cognitive impairment, accessed 2 February 2023.
Draper B, Cations M, White F et al. (2016) 'Time to diagnosis in young‐onset dementia and its determinants: the INSPIRED study', International Journal of Geriatric Psychiatry, 1217‐1224, doi:10.1002/gps.4430.
WHO (World Health Organization) (2022) A blueprint for dementia research, WHO, accessed 9 November 2022.