5: Dementia type
People with dementia should be informed about their type of dementia so that they and their family and carers better know the prognosis and appropriate treatment options. However, it can be challenging to correctly diagnose the type of dementia based on a person’s symptoms (AIHW 2023), and a confirmation of diagnosis may require post-mortem assessment (Love 2005). A reliable classification of dementia type can also be difficult when a person has more than one type of dementia.
There is a lack of reliable information on dementia type in health and aged care data collections, and those that do collect information on dementia type use different classification systems (AIHW 2020), which is an interoperability issue that can lead to inconsistencies in how dementia data are recorded and reported. The AIHW Dementia in Australia report currently reports data on dementia type where national data permit.
Addressing the data gap and improving data
Dementia type data will help understand which dementia types need more research, policy development or services. This may lead to different prevention, treatment and service recommendations and planning for those types.
Work has already commenced to harmonise the collection of data on dementia (including by dementia type) in national data collections. The Dementia National Best Practice Data Set (NBPDS) was endorsed for national use in October 2022. A NBPDS is one of several types of metadata sets (known as data set specifications), that provides recommendations on data collection by organisations. The Dementia NBPDS provides recommendations on how to classify and collect data on dementia type.
Proposed data improvement activity
The main activity proposed to improve data on dementia type in national data collections is to work towards ensuring data are collected in a consistent manner in different national data sets used for dementia monitoring. Information on the intended outcome, priority rating, level of investment required, timeframe for completion and who is responsible for undertaking this activity is detailed below.
This activity would work towards the collection of complete and harmonised dementia national data, including but not exclusive to data on dementia type. There are several components to this activity which would be undertaken sequentially. This includes:
- supporting organisations to transition their data to align with the Dementia NBPDS
- evaluating and refining the Dementia NBPDS based on consultation with organisations who have either attempted to, or have, incorporated recommendations in the Dementia NBPDS in their data collections
- progress to develop a Dementia National Best Endeavours Data Set (NBEDS) or National Minimum Data Set (NMDS). A NBEDS is a metadata set of health data which Australian jurisdictions agree they will make their best effort to collect, while a NMDS is the minimum set of data elements that is mandatory for all Australian jurisdictions to follow when collecting and reporting national data.
The progression to a NMDS would help maximise the use of consistent dementia metadata in key national collections, increasing the quality and consistency of dementia data and facilitating data linkage activities.
In parallel, the National Centre for Monitoring Dementia (NCMD) could promote approaches to include dementia data within sector-specific data sets such as the Aged Care NMDS and other NMDSs.
Outcome: Dementia data collected consistently and more broadly across sectors
Priority: High
| Alignment | Foundational | Dependency | Priority Group Data | Priority score (Maximum 10) |
|---|---|---|---|---|
| 4 | 3 | 0 | 1 | 8 |
- Alignment: critical importance
- Foundational data: provides greater interoperability
- Dependencies: high, requires uptake of recommendations in the Dementia NBPDS by organisations; progression to a NBPEDS or NMDS require extensive consultation, agreement by federal, state and territory jurisdictions, and endorsement by relevant committees
- Priority group reporting: likely – the current Dementia NBPDS recommends collecting data on First Nations status, veteran status, and culturally and linguistically diverse (CALD) information (country of birth, main language other than English spoken at home, proficiency in spoken English, and year of first arrival in Australia)
Level of investment: Medium–High
As there are several components to this activity, investment is required over the long term. However, significant investment may be required by organisations to change current data collection practices to align to the data developed from this activity.
Timeframe: Long term
Responsible stakeholder: AIHW NCMD.
AIHW (Australian Institute of Health and Welfare) (2020) Dementia data gaps and opportunities, AIHW, Australian Government, accessed 4 April 2022.
AIHW (2023) Dementia in Australia, AIHW, Australian Government, accessed 23 February 2023.
Love S (2005) ‘Neuropathological investigation of dementia: a guide for neurologists’, Journal of Neurology, Neurosurgery & Psychiatry, 76:v8–v14, doi:10.1136/jnnp.2005.080754.