Young Onset Dementia :
Carers’ needs and their quality of life
Dr. P.S.D.V.Prasadarao, Prof. Douglas Paton & Prof. Michael Lowe
School of Psychological and Clinical Science (SPACS)
Research team
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Dr. P.S.D.V. Prasadarao, SPACS, CDU
Prof. Douglas Paton, SPACS, CDU
Prof. Michael Lowe, RDH
Judy Ratajec, RDH
Stephanie Charlesworth, Alzheimer’s
NT
Research Assistance
Rachel Tumminello
What is Young Onset Dementia?
•The presence of Dementia under the
age of 65 is described as YOUNG ONSET
DEMENTIA.
•International prevalence rates : 54-200/
100,000 in the 30-64 age group.
•In Australia : 68.2 per 100,000 persons at
risk.
•Higher prevalence of YOD in Australia
compared to international rates.
(Koopmans & Rosness, 2014; Withall et al., 2014; van Vliet et al., 2010)
What prompted this study?
•Specialized health care services are
limited.
•Persons and family need special/unique
services.
•Needs of the care givers are poorly
understood.
•It is important to empower PWDs with
adaptive and resilient coping.
Specific objectives
•To investigate the functional
characteristics of the informal
carers of persons with YOD.
•To investigate the needs of the
informal carers of persons with
YOD.
•To assess the quality of life in
informal carers of persons with
YOD.
Design
•Multidisciplinary study.
•Prospective cohort study.
•Assessment of informal caregivers of persons with YOD.
Goals achieved
•Developed a multidisciplinary
team interested in YOD.
•Developed methodology for
assessment.
•Base-line data in Australia.
•Data collection to be completed
shortly.
•Two papers on perspective of YOD
are under way.
Future research
•Develop structured
questionnaires for assessment
of needs specific to YOD.
•Extend the study with
National/international
collaboration.
Acknowledgements
Our sincere thanks to
•Alzheimer’s Australia Dementia Research
Foundation
•Alzheimer’s Australia NSW, Library and
Information Service
•Alzheimer’s Australia NT
•Alzheimer’s Australia, TAS, NSW, SA, QLD
•Carers’ NT
•CDU EHSE Grants team
•CDU Human Research Ethics Committee
Acknowledgements
Our sincere thanks to
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Annette Moxey
Candy Misquitta
Connie Alomes
Daniel Jae Olsen
Dr. Bev Turnbull
Dr. Jennifer Buckley
Jenna Sherwell
Judy Ratajec
Kaitlyn O’Bryan
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Kim Formosa
Michelle de Mari
Prof. Timothy Skinner
Rachel Tumminello
Robyn Hines
Simon Blaze
Steph Charlesworth
Teresa Smithson
Thank you