7: Dementia diagnosis and management

There is no single test available to diagnose dementia, and a range of cognitive and medical screening tools and assessments are used to make a diagnosis.

A lack of national data on the diagnosis and management of dementia by primary and secondary care providers (in particular, data from general practitioners (GPs) and specialists such as geriatricians) is the largest data gap affecting our understanding of dementia in Australia (AIHW 2020a). Dementia diagnostic information cannot be inferred from Medicare Benefits Schedule (MBS) data, as it is not possible to distinguish between dementia-specific services and services for the management of other health issues (AIHW 2023).

Currently, services provided under the MBS (such as GP and medical specialist consultations, diagnostic tests and some allied health care) provided to people with dementia at a national level can only be examined through linkage to data sets that include dementia diagnosis information. Important information on dementia diagnosis (such as the date of diagnosis, dementia type, the setting in which dementia is diagnosed, and who made the diagnosis) is captured in various practice management systems, but the capability to report on these for national dementia monitoring has not been determined and they are not available for linkage to other data sets (AIHW 2020b). Better diagnosis data would also allow examination of post-diagnostic care and support for people with dementia.

More secondary care providers of specialised dementia assessment (in memory clinics or other locations), are registering new dementia diagnoses with the Australian Dementia Network (ADNeT) Clinical Quality Registry, which aims to measure and drive improvement in quality of care and patient outcomes for people diagnosed with dementia or mild cognitive impairment (Ward et al. 2022).

The National Primary Health Care Data Collection (under development) will be an important initiative for improving data on the diagnosis and management of dementia in primary care. The National Primary Health Care Data Collection will fill a long-standing information gap in relation to primary health care data for population health monitoring, research, policy and planning. It will be a key future source of data on dementia that is expected to help fill a range of dementia knowledge gaps.

Importantly, dementia is usually diagnosed, treated and managed in the community, but it may be under-diagnosed in primary care due to lack of symptom recognition, documentation of dementia in medical records and cognitive testing (Ng and Ward 2019). There may also be reluctance to seek medical help due to stigma surrounding dementia or belief that there are no helpful interventions. Poor access to health care providers and a lack of confidence in GPs to diagnose dementia may also contribute to under-diagnosis. Decreasing the stigma around dementia and greater awareness of the benefits from a diagnosis are therefore required to improve diagnosis and capture of dementia in primary care settings.

Proposed data improvement activities

There are several activities proposed to improve primary and secondary care data on dementia diagnosis and management. These include activities to: 

  • conduct a dementia data demonstration project for the National Primary Health Care Data Collection
  • assess utility of future National Primary Health Care Data Collection for monitoring dementia diagnosis and management in primary health care
  • undertake a detailed exploration of GP or specialist management software to assess utility and suitability of data for dementia monitoring
  • review the MBS to include an item for dementia diagnosis and management
  • introduce a dementia measure in the Practice Incentives Program Quality Improvement initiative
  • investigate measures of quality of care and quality of life outcomes for hospital patients and aged care residents living with dementia.

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.