Support needed for younger onset dementia families who may be facing aggression and compulsive behaviours

The estimated 28,000 Australian families who face the stress of caring for someone with younger onset dementia urgently need more tailored support.

Dr Claire O'ConnorThe estimated 28,000 Australian families – often with dependent children – who face the stress of caring for someone with younger onset dementia urgently need more tailored support, new research has revealed.

Younger onset dementia, defined as onset before the age of 65, strikes people in the prime of their lives and leaves families coping with behaviour changes as well as loss of employment and financial disadvantage.

New published research in the journal Ageing & Mental Health based on the personal experiences of 71 Australian families has produced new insights into what they face caring for someone with younger onset dementia. The families caring for a loved one with average ages ranging from 50-54.

The research, “Supporting behaviour change in younger-onset dementia: mapping the needs of family carers in the community”, found 90% of the families surveyed reported behaviours including verbal and physical aggression, compulsive behaviours, disinhibition and inappropriate social behaviour, and apathy.

A majority (57%) of family carers of people with frontotemporal dementia (a form of younger onset dementia) reported experiencing aggressive behaviours, followed by 41% in semantic dementia and 22% in Alzheimer’s disease.

The research authors Dr Claire O’Connor, Dr Alinka Fisher, Dr Sau Chi Cheung, Dr Jashelle Caga and Prof Olivier Piguet, explored the specific behaviour support needs of families caring for someone living with younger onset dementia.

Dr O’Connor, from HammondCare’s Centre for Positive Ageing, said that while some families expressed confidence in managing these behaviours, many others struggled to identify best support strategies or even how to access services. “Younger onset dementia accounts for about one in 10 of all cases of dementia and the majority live in the community supported by family members in their homes.

“Of particular concern, between 20-40% of these carers did not report accessing any formal support services.”

The research, funded by The University of Sydney Charles Perkins Centre Active Ageing Research Node, found families used a range of strategies for dealing with difficult behaviours, including de-escalation methods like walking away from the family member or trying to distract them.

On other occasions, there was need to defuse a situation by explaining to those around them that their family member has dementia. Turning to family and friends for help was common.

The carers often avoided behaviour triggers by, for example, doing the shopping without their family member with dementia or limiting choice of clothes for their family member to choose from.

Almost a third of family carers reported strategies specific to supporting their own wellbeing or ability to care for their family member, such as improving their own confidence in caring through seeking dementia education.

Dr O’Connor said the research showed that family carers of people living with younger onset dementia already have an existing set of skills that should be recognised, but there is a need to increase support to improve their confidence and skills for providing behaviour support.

“Availability of appropriate services to support people living with dementia in Australia is lacking and there is a specific lack of services that meet the precise needs of people with younger onset dementia,” Dr O’Connor said.

The Australian Institute of Health and Welfare report, Dementia in Australia, released this week estimates 27,800 people are living with younger onset dementia.

Read the full report