Younger Onset Dementia

25,100 Australians under the age of 65 years are estimated to have younger onset dementia. Younger Onset Dementia has significant differences to dementia in older age.

What is Younger Onset Dementia?

The dementia experienced by people under the age of sixty-five is part of the clinical syndrome that encompasses a wide range of symptoms that result in the progressive decline in cognition. Memory, language reasoning, communication skills, capacity to organise daily life and other faculties are affected.

“25,100 Australians under the age of 65 years are estimated to have younger onset dementia.”

– Alzheimer’s Australia 2016

What we know...

Younger Onset Dementia has distinguishing characteristics and consequences:

  • Younger Onset Dementia is an umbrella term defined by age. It is not a specific condition. There are many types of dementia experienced by younger people including the common forms of Alzheimer’s disease, Vascular dementia, Lewy body dementia and Frontotemporal dementia, but also including a wide range of rarer conditions such as Posterior cortical atrophy (PCA), and many others.
  • Dementia may also be a coexisting dimension of other medical conditions including Motor neurone disease, Parkinson’s disease, Huntington’s disease, Multiple Sclerosis (MS), HIV/AIDs and others.
  • People with Younger Onset Dementia may have a very wide range of support needs arising from their different forms of dementia. It cannot be assumed that all people with Younger Onset Dementia are a homogenous population with similar needs.
  • Diagnosing dementia in younger people can be difficult and take many years before an accurate diagnosis is made. Patients are often misdiagnosed until dementia is definitively established as the cause.
  • Some people never receive a definitive dementia diagnosis, leaving families uncertain of the condition they are living with and how to best manage it.
  • The rate of progression of dementia in younger people can be faster. This requires particular care and  management strategies.
  • Younger Onset Dementia may include a higher proportion of people with familial Alzheimer’s disease resulting from an inherited genetic mutation passing through the generations. This applies to a small number of people.
  • People in their thirties, forties and fifties are at the period of family formation and development, and in their income generating prime. Most have substantial financial obligations. Dementia has significant financial and  social implications for the family members, particularly for the primary carer.
  • The lifestyle of people with Younger Onset Dementia, including their aims and aspirations, contrasts significantly to that of older people in the late stage of life.
  • For more information on Services and Support Requirements for people with Younger Onset Dementia and their families click here or visit alzheimers.org.uk

Research.

Key Younger Onset Dementia specialist organisations.

Leading organisations that provide research to people with Younger Onset Dementia include:

  • FRONTIER. Frontotemporal Dementia Research Group,  NeuRA, Randwick, NSW. Frontier investigates the neurological, psychological and biological basis of brain function in Frontotemporal dementia and healthy ageing.
    neura.edu.au/FRONTIER
  • Florey Institute of Neuroscience and Mental Health.  Largest brain research group in the Southern Hemisphere. Dementia studies focus on the genetic and environmental  factors that contribute to Alzheimer’s disease and related topics.
    florey.edu.au/dementia

Services.

Specific services to support people with Younger Onset Dementia are limited.

Some organisations that provide specialist support to people with Younger Onset Dementia include:

    • The Lovell Foundation: a voice for Younger Onset Dementia
    • Royal Melbourne Hospital Neuropsychiatry Unit:  neuropsychiatric assessment, diagnosis and advice to psychiatric, neurological and other medical and mental health services.
      neuropsychiatry.org.au
    • Eastern Cognitive Disorders Clinic: diagnostic clinic for patients with focal onset dementias and cognitive syndromes with diagnostic difficulties, Box Hill Hospital.
      ecdc.org.au
    • Alzheimer’s Australia Victoria provides education, support, information, advocacy and awareness, including a specific Younger Onset Dementia Key Worker Program throughout Victoria (and in all States)
      vic.fightdementia.org.au
    • For Planned Activity Groups for people with Younger Onset Dementia click here

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Younger Onset Dementia Toolkit for Carers and Families click here for more information

 

Connections.

There is much advice available on living with Younger Onset Dementia.

Connect with a group:

  • The Lovell Foundation: lovellfoundation.com.au
  • PCA Australia (support group for people with Posterior  cortical atrophy): pcaaustralia.org
  • Alzheimer’s Australia Victoria Younger Onset Dementia  Reference Group: vic.fightdementia.org.au
  • Eastern Younger Onset Dementia Alliance is an informal  group that links to ten organisations in the Eastern Region of Melbourne which are interested in helping or providing opportunities to people with Younger Onset Dementia: 
    eyodasite.wordpress.com
  • Link to a local Planned Activity Group (see ‘Services’ above)

Websites providing advice include:

International:

  • One of the most integrated service models for people with Younger Onset Dementia is The Florence Nightingale Centre in The Netherlands florence.nl
  • For a Younger Onset Dementia literature review developed by the Centre for Health Service Development at Wollongong University (2014) click here