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.