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Empowerment of young people who have a parent living with dementia: a social model perspective

Published online by Cambridge University Press:  13 November 2015

Karen Hutchinson ,
Chris Roberts Open the ORCID record for Chris Roberts [Opens in a new window] ,
Michele Daly Open the ORCID record for Michele Daly [Opens in a new window] ,
Caroline Bulsara Open the ORCID record for Caroline Bulsara [Opens in a new window]  and
Susan Kurrle Open the ORCID record for Susan Kurrle [Opens in a new window]
Karen Hutchinson*
Affiliation:
NHMRC Cognitive Decline Partnership Centre, Old Leighton Lodge (Building 8), Hornsby Ku-ring-gai Hospital, Hornsby NSW 2077, Australia
Chris Roberts
Affiliation:
Northern Clinical School-Hornsby, Building 3, Hornsby Ku-ring-gai Hospital, Hornsby NSW 2077, Australia
Michele Daly
Affiliation:
Northern Clinical School-Hornsby, Building 3, Hornsby Ku-ring-gai Hospital, Hornsby NSW 2077, Australia
Caroline Bulsara
Affiliation:
The University of Notre Dame Australia, 19 Mouat Street (PO Box 1225), Fremantle, Western Australia 6959, Australia
Susan Kurrle
Affiliation:
NHMRC Cognitive Decline Partnership Centre, Old Leighton Lodge (Building 8), Hornsby Ku-ring-gai Hospital, Hornsby NSW 2077, Australia
*
Correspondence should be addressed to: Karen Hutchinson, Northern clinical school-Hornsby, Building 3, Hornsby Ku-ring-gai hospital, Palmerston Rd, Hornsby NSW 2077, Australia. Phone: +612-9477-9127; Fax: +612-9482-1642. Email: karen.hutchinson@sydney.edu.au.
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Abstract

Background:

Socially constructed disablement has marginalized young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper, we explored the young people's lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community.

Methods:

In this qualitative research study, the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants.

Results:

Three themes emerged; invisibility highlighting the issues of marginalization; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed.

Conclusion:

The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members.

Keywords

young peopleparents with younger onset dementialived experiencessocial model of disabilitymarginalizationcollaboration
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 4 , April 2016 , pp. 657 - 668
Copyright
Copyright © International Psychogeriatric Association 2015 

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