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Feeling invisible and ignored

Families' experiences of marginalisation living with younger onset dementia

Published Date: 1.10.2018

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Theme: Specific groups of carers

Sub-theme: Caring for someone with dementia

Young carers Younger onset dementia Qualitative data Lived experience Open access

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: Caring for someone with dementia

View Publication Young carers Younger onset dementia Qualitative data Lived experience Open access

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.

 

Feeling invisible and ignored

Families' experiences of marginalisation living with younger onset dementia

Published Date: 1.10.2018

  • Author/ Authors

    Karen Hutchinson, Chris Roberts, Pamela Roach

  • Suggested citation (APA 7th edition)

    Hutchinson, K., Roberts, C., & Roach, P. (2018). Feeling invisible and ignored: Families’ experiences of marginalisation living with younger onset dementia. In Dementia as Social Experience (1st ed., Vol. 1, pp. 46–66). Routledge. https://doi.org/10.4324/9781351241816-4

Long Summary

This article analyses the effects that younger onset dementia has on the whole family, drawing on insights from interviews with impacted individuals. The study poignantly records the in-depth experiences of carers and people living with dementia through highlighting both high points and low points. Using this data, the article reflects on ways to improve support services for these families.

    Key Messages for Carers


  • Demonstrates the use of carers' lived experiences to inform service development
  • Collates stories of people impacted by younger onset dementia
  • Promotes a holistic approach to care

  • Key Messages for Policy Makers


  • Provides suggestions for the development of support services
  • Discusses the experiences of people impacted by younger onset dementia
  • Highlights the importance of considering the wider societal context when dealing with dementia

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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.