People with early onset dementia wanted

Researchers are recruiting for people with younger onset dementia, their family members and carers for a study looking at the prevalence of the condition and services required to assist.

Professor Brian Draper from the University of New South Wales School of Psychiatry is recruting people for the INSPIRED study, which is investigating younger onset dementia.

By Natasha Egan

People in New South Wales living with early onset dementia, along with their family members, supporters and carers, are needed for research investigating the increasing prevalence of the condition.

Researchers from the University of New South Wales also want to learn about the experiences and service requirements of people with younger onset memory disorders, which is defined by symptoms that occur before the age of 65 years.

The first-of-its-kind study in Australia aims to establish how common younger onset dementia is in Australia, said lead investigator, Conjoint Professor Brian Draper from UNSW School of Psychiatry.

“There’s no Australian data that looks at this,” Prof Draper said. 

Currently, when a report is released information is based on the extrapolation of data of English people, he said.

“We’re also looking at pathways to care and the stresses people with younger onset dementia and their families face,” he said.

“There are a lot of different concerns. Some are being met by government but most agree that younger people with dementia don’t quite fit the pattern of services needed as those older.”

There’s a lack of age specific services, which are generally set up for people in their 80s, not their 50s, and there are different pressures on families, such as having to retire from the workforce and coping with young children, he said.

Prof Draper and his team are about a year and a half into the National Health and Medical Research Council funded study, known as INSPIRED. 

Preliminary results

The pilot phase research, covering the eastern suburbs of Sydney, identified 141 people with early onset dementia.

The cause of their dementia varied and included illnesses such as Alzheimer’s disease, frontotemporal dementia, brain infections, head injuries, problems with alcohol, Parkinson’s disease and Multiple Sclerosis.

Alzheimer’s disease is the major cause of dementia in older people, and while still prominent in those with younger onset dementia, people aged 50 to 70 are more likely to be affected by alcohol-related dementia or frontotemporal dementia, Prof Draper said.

Based on those preliminary findings, up to one in 750 Australians may be affected, the study has found. International estimates put the number of affected people at one in a 1000.

The increase in prevalence and incidence of younger onset dementia is a direct result of the baby boomer effect, Prof Draper said.

“There is a much higher number of people in that age group of 50- to- 70 year-olds.”

However, whether there is actually any increase in risk for any individual in unknown because there is no research, he said.

“We don’t know if a 55-year-old is at more risk now than a 55-year-old was in 1962.

“This is one of the dilemmas.”

The pilot data was too small for the numbers to be relied upon, so the next phase of the study will increase the sample size to extend from south-east Sydney down to the Illawarra to determine how common the condition is.

The part of the study investigating the experiences and service requirements of people with younger onset dementia, their family members, supporters and carers is being opened to include all people affected across the state.

Get involved

Researchers will be recruiting up until mid-way through 2013.

Consultations may take place via questionnaires, in the home, at the university, or over the telephone depending on a person’s location, Prof Draper said.

There will also be focus groups with health and service providers down the track for to get involved in, he said.

While they would prefer a person with dementia and their supporters to take part in each aspect of the study, researchers will accommodate participants for as little or as much as they are able to be involved.

And all participants will receive a $25 gift card for their support.

People seeking more information or wishing to express their interest in participating can contact the study coordinator, Nicole Denham, by calling 02 9385 2617, emailing nicole.denham@unsw.edu.au or visiting the INSPIRED study’s website.

Tags: brian-draper, dementia, inspired, unsw, younger-onset-dementia,

3 thoughts on “People with early onset dementia wanted

  1. One tiny enclave in Sydney and 141 people are reported to have dementia and they are aged under sixty five. Hope the federal government throws buckets of money into research and reviews care packages for this group.

  2. Ihave a son and daughter who have dementia since their teen age years, my daughter is in residntial care and very happy there, however now I need an urgent placement there is nowhere for him to go, all the assesments have been done but am being told there is no placement for him.
    There are 16,000 young people waiting for a placement but nowhere for them to go. I wonder what the government are ging to do for those aged parents trying to cope with what is placed before them

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