The Dementia Data Dilemma

Dementia is one of the major chronic conditions of this century. 

Some important dementia data we know and use every day includes statistics like, 353,800 Australians are currently living with dementia, and without a medical breakthrough this number is expected to be almost 900,000 by 20501.

We know there are approximately 25,100 people in Australia under the age of 65 with younger onset dementia. There are an estimated 1.2 million people involved in the care of a person with dementia.2 We also know dementia is the second leading cause of death3 in Australia and there is no cure and on average symptoms of dementia are noticed by families three years before a diagnosis is made.4 

Dementia DataIt is important that we constantly update dementia data to ensure our policy and planning work is well informed. Currently there are some gaps and limitations in data collection, especially in relation to dementia prevalence and burden of the disease, risk factors, diagnosis and treatment, and service delivery supply and demand, which need to be addressed. 

Dementia Australia welcomed the opportunity to respond to the Productivity Commission’s April 2016 Issues Paper, Data Availability and Use to highlight the need for high quality, relevant data to be made available to help inform policy and enable service planning in Australia, in order to better assist those living with dementia, and their carers. 

Australia lacks national epidemiological data that could be used to derive more reliable estimates about the number of people with dementia. While the Australian Institute of Health and Welfare has invested significant effort in the development of dementia prevalence estimates, there are still some gaps and limitations in the data. 

The Australian Institute of Health and Welfare has put forward a number of options, to develop improved dementia data in Australia, which Dementia Australia strongly supports. The Australian Government could explore how more robust prevalence estimates might be obtained, through the use of existing data sources, or the creation of new ones. A dementia registry for example and a multi-stage population survey, in which participants are systematically assessed for dementia using both screening tools and clinical diagnostic assessments. 

The Australian Institute of Health and Welfare has been at the forefront of processing data on dementia and presenting it in a way that gives it meaning. Dementia Australia strongly recommends that the Australian Institute of Health and Welfare is resourced to continue to focus on the improvement of data and the development of better information about dementia prevalence and service use by people with dementia, to ensure there is an adequate evidence base on which to build policy and important dementia programs in Australia.

A substantial amount of information on people with dementia is collected in the aged care system, but there is considerable inconsistency in the type of data collected and the definitions used.  

The way dementia is recorded in the aged care and health sectors needs to be standardised. The way dementia is currently captured and recorded varies greatly, which makes the data much harder to convert into meaningful information. Transparency about datasets is also important, particularly in relation to service planning and policy development.

The aged care system is undergoing a significant reform process, including a move to consumer-directed care, which gives consumers more choice in the services they receive.  However, this will only be effective if consumers and carers have access to adequate information about service performance and quality, to enable them to engage in informed decision-making.  

A voluntary quality-indicator program has commenced within the aged care sector. The program is in the very early stages with data not yet publicly available. The initial indicators included as part of this program are clinically focused and feedback from consumers indicates that there is a need for publicly available indicators that capture consumer experience and quality of life within aged care services, to assist consumers in making informed choices in regard to the services they receive. Dementia Australia supports this type of data being routinely collected, analysed, and made publicly available, in the hope that consumers will be empowered to make informed decisions, and service competition will drive quality improvement. 

Finally and very importantly, Dementia Australia recommends that researchers should have appropriate access to public datasets in cases where research and analysis of this data could promote better understanding and knowledge to support efforts to tackle dementia.

There is currently no cure for dementia, and we lack effective therapies which significantly alter the disease trajectory. Sustained investment in dementia research is needed, encompassing risk reduction, care at all stages of the disease, and the search for effective curative treatments. The investment must support the translation of research into practice, to ensure that people with dementia and their families benefit through improved care and services. 

With the ageing of the Australian population, the care and support of people with dementia is one of the largest healthcare challenges facing Australia, and the challenge is growing. It is critical moving forward that we have good data on prevalence and burden of disease, on risk factors, on diagnosis and treatment, and on service supply and demand. 

Dementia Australia hopes these matters raised with the Productivity Commission will help to improve dementia data, its availability and its use.

1 Australian Institute of Health and Welfare (2012) Dementia in Australia
2 Dementia Australia, (2011) Pfizer Health Report Issue #45 – Dementia, Pfizer Australia
3 Australian Bureau of Statistics (2015) Causes of Death, Australia, 2013: Cat no. 3303.0
4 Phillips, J., Pond, D., Goode, S (2011) Timely Diagnosis of Dementia: Can we do better?