Younger Onset Dementia Study

Are you living with or caring for someone with younger onset dementia?

Who is eligible to participate?

You may be eligible to participate if you are:

  • Living with younger onset dementia
  • Caring for or supporting someone with younger onset dementia

Additional criteria:

  • The symptoms in the person with dementia must have started before the age of 65, even though the person may now be older
  • The person with dementia must be resident in New South Wales

What is expected?

You will be expected to complete a questionnaire, be interviewed (in person or by telephone) and/or attend a focus group discussion about service needs and experiences.  You get to choose how much you wish to participate.  

What is our hope?

The INSPIRED study team hopes to identify how many people are living with younger onset dementia in the area, learn about the many different types of conditions that lead to memory and related disorders, and learn about the service needs and experiences of these diverse groups.

What happens with the study results?

The information gathered in this study will be kept confidential.  It will be analysed by the study team, and will inform reports and presentations that will contribute to improved understanding and better service provision.

What is younger onset dementia?

For the purpose of this study, 'younger onset dementia' encompasses cognitive impairment/memory or related disorders that may be experienced due to a variety of conditions.  Younger people may experience memory loss and other changes not only from Alzheimer's Disease, but from conditions such as frontotemporal dementia and vascular dementia.  Additionally, HIV/AIDS related cognitive impairment, alcohol-related cognitive impairment and cognitive impairment secondary to Multiple Sclerosis or Huntington's Disease contribute to memory and related disorders among younger adults.  The INSPIRED Study aims to represent this diverse population in its research. 

For more information, please call the Study Co-ordinator, Nicole Denham on (02) 9385 2617 or email, or visit their website.

Nicole Denham is involved in the management of the INSPIRED study.  With a background in medical anthropology, Nicole's previous experience includes research into disease management, experience, and sense of place among elders with heart failure in rural Canada, and medical research in Ghana.  She has volunteered in palliative care and elder care environments. 

image - INSPIRED Team
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