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,' said AIHW spokesperson Dr. Fleur de Crespigny (PhD).
'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.