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Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis:

A scoping review

Published Date: 1.3.2019

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Theme: Specific groups of carers

Sub-theme: Young carers

Children and young people Carer needs Carer support

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Theme: Specific groups of carers

Sub-theme: Young carers

View Publication Children and young people Carer needs Carer support

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis:

A scoping review

Published Date: 1.3.2019

  • Author/ Authors

    Åke Grundberg, Jonas Sandberg, Åsa G Craftman

  • Suggested citation (APA 7th edition)

    Grundberg, Å., Sandberg, J., & Craftman, Å. G. (2021). Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis: A scoping review. Dementia, 20(8), 2933–2956. https://doi.org/10.1177/14713012211023653

Long Summary

This article examines the experiences of young individuals with a parent diagnosed with dementia, highlighting significant behavioural and personality changes in their parents, altered family roles, and the emotional challenges they face. It reveals that these young caregivers often cope with uncertainty and mixed emotions, including sadness and frustration, while also dealing with inadequate support systems. The findings stress the need for health and social care systems to recognise and address the support needs of these young carers, as their caregiving responsibilities can significantly affect their wellbeing, education, work, and relationships.

    Key Messages for Carers


  • Many carers experience the significant impact of their responsibilities, from emotional strain to shifting family roles. This research underscores the importance of seeking support and reinforces that carers’ wellbeing is just as important as the wellbeing of the person they care for.

  • Key Messages for Policy Makers


  • Young people who care for a parent with dementia face significant emotional, social, and practical challenges, yet they remain largely invisible in health and social care systems, targeted policies and tailored support services are urgently needed to protect their wellbeing, education, and future opportunities.

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.