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Caring for people with dementia

Mapping the experience and journey from diagnosis

Published Date: 13.2.2025

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Theme: Specific groups of carers

Sub-theme: Caring for someone with dementia

Dementia Home care Support services

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 Dementia Home care Support services

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.

 

Caring for people with dementia

Mapping the experience and journey from diagnosis

Published Date: 13.2.2025

  • Author/ Authors

    Ruth Brookman, Ruby Lipson-Smith, Olivia Maurice, Nina Mcllwain, Lukas Hofstaetter, Michelle DiGiacomo, Danielle Ni Chróinín, Madeleine J Cannings, Celia B Harris

  • Suggested citation (APA 7th edition)

    Brookman, R., Lipson-Smith, R., Maurice, O., Mcllwain, N., Hofstaetter, L., DiGiacomo, M., Chróinín, D. N., Cannings, M. J., & Harris, C. B. (2025). Caring for people with dementia: Mapping the experience and journey from diagnosis. The Gerontologist. https://doi.org/10.1093/geront/gnaf053

Long Summary

This study explores the experiences of family care partners of people with dementia, highlighting their unmet needs and barriers to support within healthcare and aged care systems. Over six months, 15 care partners recorded their interactions with services, with findings revealing three key periods of heightened need: dementia diagnosis, in-home care, and transition to residential care. Thematic analysis identified corresponding risks: psychological distress, social isolation, and disempowerment due to lack of knowledge. The study underscores the importance of timely, stage-specific support and suggests that education and training can help address foreseeable gaps in care partners’ needs.

    Key Messages for Carers


  • This study highlights the challenges family carers face at key stages of the dementia journey during diagnosis, in-home care, and when moving into residential care. It shows how carers often experience stress, isolation, and a lack of information during these times. Knowing about these stages can help carers better understand their own needs and seek the right support at the right time.

  • Key Messages for Policy Makers


  • This study shows that family carers of people with dementia face the most challenges at three key stages: diagnosis, in-home care, and moving into residential care. During these times, carers often feel stressed, isolated, and unsure about what to do. The findings highlight the need for better support at each stage to improve wellbeing for both carers and the people they support.

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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.