A still shot from the Ronin Films documentary about dementia, ‘The Long Goodbye’. Depicted are one of three families which feature throughout the film, Michael and Jane. Michael, a criminal barrister with four teenage children was diagnosed with younger onset Alzheimer’s disease at the age of 49.
Health professionals lack an awareness and understanding of younger onset dementia and as a result, often misdiagnose people aged under 65 who have the disease instead of treating them for it, according to dementia advocates.
A series of community consultations between Alzheimer’s Australia, dementia service consumers and their carers has found that it usually takes medical professionals much longer to diagnose a younger person with dementia because they are not aware that the disease can strike anyone at any age.
Adults with the disease have told Alzheimer’s Australia that younger onset dementia may also get misdiagnosed by general practitioners because younger people usually experience the rarer forms of dementia which requires specialist attention.
The organisation has therefore called on the Commonwealth to fund an Alzheimer’s Australia national awareness program that aims to specifically focus on younger onset dementia and involve younger people with dementia sharing their stories with the medical profession and general community.
It also wants to establish a national advisory group of people with dementia of all ages to advocate on behalf of people with dementia.
Members would contribute to shaping a national awareness program, evaluate the work of the soon-to-be hired Younger Onset Dementia Key Workers, and raise the profile of people with younger onset dementia in the National Disability Insurance Scheme (NDIS).
Alzheimer’s Australia national president and Australian of the Year 2013, Ita Buttrose, stated that the issues facing people living with dementia under the age of 65 are unique.
“They don’t typically qualify for aged care and find it difficult to fit into disability services because they have to cope with a completely different set of professional and family-related issues,” Ms Buttrose said.
“They also experience difficulties accessing respite care, getting a diagnosis and dealing with stigma and isolation within the broader community.”
Glenn Rees, CEO of Alzheimer’s Australia added: “With historic changes in health policy taking place with the roll out of the National Disability Insurance Scheme (NDIS), and the federal government’s proposed aged care reforms, this is the time to make sure that people with younger onset dementia receive the support they need.
“A collaborative approach will help create solutions for improved access and choice.
“But for this to happen, consumers will need to be better informed to make choices about the services to meet their needs and service providers will need to be prepared to respond flexibly.”
A new horizon?
The views and opinions of people with younger onset dementia were collected by Alzheimer’s Australia over the last month and summarised in a new report, Younger Onset Dementia: A new horizon?, released at the organisation’s National Consumer Summit early this week.
A draft report was created just before the Alzheimer’s Australia summit and adapted to include the opinions of consumers at the summit on day one.
More than 320 service providers, stakeholders and policy makers across the aged care, disability and mental health sectors attended the summit on day two to discuss the report, the issues facing younger people with dementia and address solutions.
“Frequently individuals with younger onset dementia receive incorrect diagnoses of depression or other mental health concerns before receiving an accurate diagnosis of dementia,” the report states.
“These delays are traumatic in the lives of younger people and their families. Individuals are aware that something is wrong but are uncertain about what it could be.
“Some face difficulties in employment or in their relationships due to their unexplained symptoms.
“…There is a widespread lack of awareness regarding the availability of genetic testing and no national framework for genetic testing for younger onset dementia.
“Access to testing and the cost of testing is both variable and expensive. Most genetic tests are not listed on the Medical Benefits Scheme.”
The report also explains that those who live with younger onset dementia often face stigma, discrimination and in some cases disbelief about their condition just because most Australians – not just the medical community – are unaware that dementia can affect people at any age.
“The condition can have a devastating impact for the person with younger onset dementia, their family, children and friends.
“Relationships with loved ones change from partners to carers and people with young families often find it difficult to access services to help their family transition, such as counseling for young children.
“In order to protect the human rights and dignity of younger people with dementia and improve their quality of life, there must be a better understanding in Australian society of the condition and its impact on the lives of thousands of Australians.
“We must change community attitudes from one of avoidance to inclusion.”
Younger onset dementia is a term used to describe any form of dementia that has an onset of symptoms before the age of 65.
The Australian Institute of Health and Welfare have estimated that younger onset dementia affects around 24,000 people in Australia in 2013.