Understanding how people with dementia use health services in their last year of life

NOTE: Australian Institute of Health and Welfare (AIHW) staff are assisting other Government agencies, including the Department of Health, to monitor the COVID–19 (coronavirus) pandemic.

This is our top priority and some of the work we had planned for 2020 will have to be delayed. We are still releasing some reports and other data products, especially those which were close to completion prior to the pandemic or contain information which is time-sensitive for policy-makers and service-providers.

In one of the first studies of its kind in Australia, the use of health services by people with dementia in their last year of life has been examined in a new report from the Australian Institute of Health and Welfare (AIHW).

The report, Patterns of health service use by people with dementia in their last year of life, brings together de-identified data on public hospital admissions, GP and specialist visits, emergency department care, and dispensing of prescription medications. The linked database used in this study did not contain aged care data.

‘By bringing together different sources of data to tell a more complete story, the study demonstrates the potential for integrated health data to address gaps in our current understanding of a range of health issues, in this case dementia,’ said AIHW spokesperson Dr. Fleur de Crespigny.

The study examined health service use in New South Wales and Victoria by more than 70,000 people in the 12 months prior to their death in 2013, and sought to describe the patterns of health service use by people with and without dementia.

Of these, 19,222 (27%) were identified as having dementia and 50,928 (73%) had no record of dementia.

‘All Australians deserve appropriate care in their final years of life, and examining how health services are used by people with and without dementia in their last year of life is important for policy development and health service planning,’ Dr. de Crespigny said.

The report showed that people with dementia who died aged 65 and over used health services less than people without dementia in their last year of life, with the exception of GP services.

The use of health services decreased with increasing age at death, regardless of whether they had dementia or not.

‘There was also a notable difference in health services used by people who died with younger-onset dementia compared to those with dementia who died aged 65 or over—almost half of people with younger-onset dementia were admitted to hospital or presented to the emergency department in their final month of life, compared with just over one-third of people with dementia who died aged 65 and over,’ Dr. de Crespigny said.

‘It is important to note that how a person with dementia uses health services in their final year of life is likely to be influenced by a number of factors, including the impact of these services on their quality of life, personal views, family views and medical opinions.’

Dementia is a collection of symptoms—usually progressive in nature—caused by a range of disorders affecting the brain. The prevalence of dementia increases with age, mainly occurring among those aged 65 and over, and often co-exists with other age-related conditions.

The number of Australians with dementia is projected to more than double between 2020 and 2050—without a significant breakthrough in prevention or treatment, dementia will have an increasingly major impact on Australia’s health and aged care systems.

The study examined data in the National Data Linkage Demonstration Project, which contained de-identified hospitals data from New South Wales and Victoria linked to data from the Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and the National Death Index between 2010-11 and 2015. The AIHW also examined dementia-specific hospitalisations and dispensing of dementia-specific medications for the reports: Hospital care for people with dementia 2016-17 and Dispensing patterns for anti-dementia medications 2016-17.

Today’s report was unable to look closely at the interrelationship between health care service use in the last year of life and use of aged care services, nor in depth at the role of palliative care. These issues have been of considerable interest to the Royal Commission into the Quality and Safety of Aged Care and will be explored further using more comprehensive linked data assets.

‘The use of linked data in this study highlights its importance in providing a more complete picture of dementia in Australia. We will be undertaking further work to provide updated information on dementia in Australia and its impact on Australia’s health and aged care system,’ Dr. de Crespigny said.  

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