The Alzheimer's Australia NSW blog *Younger Onset Dementia and ME*

*The Alzheimer's Australia NSW blog *Younger Onset Dementia and ME* is a place for people to connect with others, to get information and helpful suggestions.

A diagnosis of younger onset dementia can be very isolating. You may have received a diagnosis, be someone who is caring for a family member, or you may have a mum or dad with younger onset dementia. You are not alone. The National Younger Onset Dementia Key Worker Program provides individualised information and support to improve the quality of life for people with younger onset dementia and also see NSW - Younger Onset Dementia . For more information contact the National Dementia Helpline on 1800 100 500.

Monday, 5 May 2014

new article - The emotional well-being of young people having a parent with younger onset dementia

Abstract
Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.

By Karen Hutchinson -  Cognitive Decline Partnership Centre, University of Sydney, Australia
Chris Roberts - Northern Clinical School – Hornsby, University of Sydney, Australia
Susan Kurrle - Cognitive Decline Partnership Centre, University of Sydney, Australia; Hornsby Ku-ring-gai Hospital, Australia
Michele Daly - Northern Clinical School – Hornsby, University of Sydney, Australia
Karen Hutchinson - Northern Clinical School – Hornsby, University of Sydney, Hornsby Ku-ring-gai Hospital, Bldg 3, Palmerston Road, Hornsby, Australia.
 

ALZ NSW members - the full text article please email nsw.library@alzheimers.org.au

Kind regards Michelle