Alzheimers NSW research - invitation to participate

Older people with Down syndrome are one of the groups identified as being at higher risk of developing Younger Onset Dementia. AlzNSW has asked us let our members, families and carers know about this important research study - people with Down syndrome and their carers are welcome to participate.

Research Project on Service and Support Requirements for People with Younger Onset Dementia and their Families

Are you or your family member living with a diagnosis of younger onset dementia?Would you like to participate in a valuable research project?

Alzheimer’s Australia NSW (AlzNSW) is conducting research with the Social Policy Research Centre at the University of NSW and UnitingCare Ageing for the NSW Government.
The research is about the experiences and needs of people with younger onset dementia and their families and understanding how these are different or unique compared to those of people with dementia at later ages.

'Younger onset dementia' is dementia which occurs before the age of 65 years.

The research aims to understand:
• Your experiences of accessing services and supports
• What your service and support needs are
• How services and supports can best meet those needs

How can you help?
We are looking for people with younger onset dementia and their family members/carers to interview.

We will ask you about:
• Diagnosis and living with younger onset dementia
• Your experiences with dementia services
• The types of support and assistance you need and would like to receive

Interviews will take no more than one hour and at a location convenient for you.
Participation in this research project is voluntary.  Your decision to participate or not will not affect your relationship with Alzheimer’s Australia NSW or any other services. 

All participants will be given a gift voucher to thank them for their time.
Your views are valuable and will be used to inform recommendations to government and service providers about improving younger onset dementia services and supports.
If you would like to participate or want to know more, please contact the Alzheimer’s Australia NSW researchers:

Jo-Ann Brown - Email jbrown@alznsw.asn.au or 02 8875 4636
Kylie Sait - Email ksait@alznsw.asn.au or 02 8875 4641

Download this information as a .pdf file to print.

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Alzheimer's Australia offers support, information, education and counselling. Contact the National Dementia Helpline on 1800 100 500.

The Growing older with Down syndrome pages on the Down Syndrome NSW website include information about Down sydnrome and dementia, and links to relevant services and supports.