New report provides a detailed picture of people with younger onset dementia

Younger onset dementia has a devastating impact on the lives of people diagnosed and their families, with many developing complex care needs as their illness progresses. In a new study of 5,400 people with younger onset dementia by the Australian Institute of Health and Welfare (AIHW), over half (58%) required permanent residential aged care, with 25% of these people aged under 65 at the time of entry to care.

The report, Younger onset dementia: new insights using linked data, uses linked data to build a detailed picture of people with younger onset dementia, their interactions with health and support services and pathways to using residential aged care services.

This report is timely in the context of increasing numbers of people being diagnosed with younger onset dementia as well as commitments from the Australian Government to minimise the number of younger people living in permanent residential aged care.

Younger onset dementia refers to dementia that begins before the age of 65. Although dementia is considered to be an older person’s disease, the number of Australians living with younger onset dementia is set to increase from 28,000 in 2021 to 39,000 by 2050"

Dr. Fleur de Crespigny (PhD), AIHW Spokesperson

‘The experiences and needs of Australians living with younger onset dementia (and their carers) are often different from those of older people. People with younger onset dementia often retain good physical health, which can affect the suitability of dementia services that are targeted at older people,’ Dr. de Crespigny said.

Rather than looking at all people with younger onset dementia, this study focused on 5,400 people who were at a relatively early stage of dementia – as identified by the dispensing of drugs used to treat Alzheimer’s disease – and followed them over time from a similar starting point.

In the absence of age-appropriate options, people with younger onset dementia may need to enter residential aged care. The report reveals more than half (58%) of people with younger onset dementia lived in permanent residential aged care during the study period from 2011–2017. Of these, one-quarter (25%) were aged under 65 when they first entered care.

The report has also been able to identify those with younger onset dementia using respite residential aged care, which can give people with dementia and their carers a break.

‘Residential respite care was used by a third (34%) of people with younger onset dementia who went on to enter permanent residential aged care. Other research shows 45% of people of all ages access respite care before they enter permanent care, suggesting that people with younger onset dementia may be under-using these services,’ Dr. de Crespigny said.

Entry to permanent residential aged care is often accompanied by a change in health service and medicine use, for those with younger onset dementia.

The dispensing of antipsychotic drugs increased from 44% to 63% of people in the first 6 months after entry to permanent residential aged care. The dispensing of antidepressants also increased from 56% to 62% of people.

Dr. de Crespigny noted the importance of providing accessible dementia services for Australians from culturally and linguistically diverse (CALD) backgrounds. Understanding the language background of people with dementia is particularly important, as people often use their first language more predominantly as their dementia progresses.

‘In 2016, one-quarter (26%) of people with younger onset dementia spoke a language other than English at home and 1 in 10 (9%) spoke English not well or not at all (compared with 22% and 4.4% of Australians of a similar age),’ Dr. de Crespigny said.

People who develop dementia while still working may face a sudden or early retirement.

‘In 2016, people with younger onset dementia were 6 times less likely to be employed than all Australians of the same age (7.4% compared with 46%, ages 60-64),’ Dr. de Crespigny said.

The report found a high proportion of people with younger onset dementia received Centrelink income support.

‘By the 4^th year of the study, 71% of people living with younger onset dementia received a Centrelink payment, primarily the Disability Support Pension (36%) and Age Pension (29%),’ Dr. de Crespigny said.

Given most dementia research focuses on older people, there is a need for better evidence to inform policy and service responses to support younger people with dementia.

‘Today’s study used linked data from the National Integrated Health Services Information Analysis Asset (NIHSI-AA) and the Multi-Agency Data Integration Project (MADIP).

The use of linked data in today’s report 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.

The Australian Government has committed to minimising the need for younger people to live in aged care facilities (including younger people with dementia). Progress towards the targets in the Younger People in Residential Aged Care (YPIRAC) Strategy 2020–25 is being tracked through the Younger people in residential aged care dashboard on the AIHW’s GEN aged care data website, also released today.

The Government is also undertaking significant work to reduce the use of restrictive practices. This includes implementing the recommendations of the Aged Care Clinical Advisory Committee to reduce the use of chemical restraints (such as antipsychotic medications) in aged care settings.