Younger onset dementia has a devastating impact on people diagnosed and their families, with new research showing more Australians will be affected.

The number of people living with the neurological disorder is set to increase from 28,000 in 2021 to 39,000 by 2050, according to a study by the Australian Institute of Health and Welfare.

Dementia is an umbrella term for various diseases affecting memory, other cognitive abilities and behaviour.

It was the third-leading cause of burden of disease and injury in 2018 and the second-leading cause of death in 2019.

‘Younger onset’ refers to dementia that begins before the age of 65.

“The experiences and needs of Australians living with younger onset dementia (and their carers) are often different from those of older people,” Institute spokesperson Fleur de Crespigny said.

“People with younger onset dementia often retain good physical health, which can affect the suitability of dementia services that are targeted at older people.”

Those with younger onset dementia develop complex care needs as their illness progresses, which can place severe strain on families, relationships and finances.

In 2016, people living with younger onset dementia were six times less likely to be employed than all Australians of the same age. 

Additionally, roughly 21 per cent of people with the condition were born in a non-English speaking country, most commonly southern and eastern European countries.

Dementia Australia chief executive Maree McCabe believes discrimination is a main issue for people with younger onset dementia.

“This can impact on timely diagnosis as health care professionals don’t associate the symptoms with younger people,” she said.

“It can also impact on people with younger onset dementia accessing appropriate health care as many services are tailored towards older people with different medical and social needs.”

In a study of 5400 people with younger onset dementia, more than half (58 per cent) lived in permanent residential aged care, often due to a lack of age-appropriate options.

Respite residential aged care, which is temporary care to assist caregivers, is used in about one-third of cases before entering permanent care, Dr de Crespigny said.

“Other research shows 45 per cent 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,” she said.

The federal government previously committed to minimising the need for younger people to live in aged care facilities in response to the 2019 Royal Commission into Aged Care Quality and Safety.

The Department of Health and Aged Care said the government has established a range of support programs including the National Dementia Support Program and the National Dementia Helpline.

It has also committed to more than $101.3 million in funding for the support program between 2022 and 2025.

An additional $10 million was allocated to developing health “pathways” to documenting local dementia services for general practitioners and their patients.

“Together, these measures will ensure people living with dementia, including those with younger onset dementia, are connected with the support they need after diagnosis,” a department spokesperson said.

The measures will also connect them with support to live at home and in their communities for longer with access to high-quality aged care services that are informed about dementia, they said.