Research Library
The Carer Knowledge Exchange Research Library is a collection of recent Australian publications and other resources that contain reliable research about family and friend carers. It is constantly being added to, and you can suggest research to be included here.
There are two main ways to use the Research Library. The first is to search using the fields below. The second is to browse by category lower down the page.
For help using the Research Library, click here.
Please also see our Frequently asked questions page.
The publications in this research library may contain references to sensitive issues and cause distress. If you or someone you are with is in immediate danger, please call 000. If you feel upset or are in distress, you can contact Lifeline, 24 hours a day, 7 days a week by phoning 13 11 14 or texting 0477 13 11 14. For other information on support for carers please visit our support for carers page.
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Is something important missing from the Research Library? Share your research or suggest research by another author using our submission form. For more information about how to create an account click here and for more information about how to upload a publication to the research library click here.
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Your search has returned 54 results
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24.3.2025
Structural stigma
Déborah Oliveira, Christine Musyimi , International Journal of care and caring
This article explores how deeply ingrained stigma in laws, policies, and systems creates unfair disadvantages for people caring for loved ones with dementia. It highlights that simply focusing on individual carers' wellbeing isn't enough.
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18.11.2022
iSupport for Young Carers
Patricia Masterson-Algar, Kieren Egan, Greg Flynn, Gwenllian Hughes, Aimee Spector, Joshua Stott, Gill Windle
This paper highlights the creation of iSupport for Young Carers, an online training program designed to help young people caring for family members with dementia.
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1.3.2019
Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis:
Åke Grundberg, Jonas Sandberg, Åsa G Craftman
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.
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15.5.2025
LGBTQ+ identity, social support and care access among LGBTQ+ caregivers of individuals living with mild cognitive impairment, Alzheimer’s disease, and related dementias
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This American study examines the associations of the caring role with lesbian, gay, bisexual, transgender, and queer (LGBTQ+) identity, social support, relationships, and care outcomes among LGBTQ+ older adults.
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26.4.2024
Tailored videoconferencing counselling program to support family carers of people living with dementia during the transition to permanent residential care
Nancy A. Pachana, Elizabeth Beattie,
This mixed methods study aimed to test the feasibility, acceptability, and potential benefits of providing a tailored, individual counselling program (the Residential Care Transition Module), delivered via videoconferencing, to Australian family carers of a relative with dementia during the transition to permanent residential care.
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1.1.2020
The experiences of grandchildren who provide care for a grandparent with dementia
Sophie Venters, Christina J Jones , University of Surrey, Guildford, UK - Department of Psychology, Faculty of Health and Medical Sciences
This paper explores the unique experiences of grandchildren as caregivers. Through a systematic review of 12 studies, it highlights the emotional and relational impacts of caregiving, including stress, changes in family dynamics, and personal growth.
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10.11.2021
The experiences of those affected by parental young onset dementia
Anna V Cartwright, Charlotte R Stoner, Richard D Pione, Aimee Spector , University College London (UCL), UK - Department of Clinical, Educational and Health Psychology
This article explores the unique challenges faced by individuals whose parents are diagnosed with Young Onset Dementia (YOD). The review highlights the profound emotional, social, and practical impacts on these individuals, including feelings of loss, changes in family dynamics, and increased caregiving responsibilities.
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30.5.2025
Type and efficacy of online training for informal carers:
This narrative literature review was conducted to explore recent evidence of informal carer eLearning education and training programs, and to guide the design of an online training program for Australian carers, including those living in rural and geographically remote settings.
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17.10.2024
Sleepiness, sleep time, and depression of caregivers are linked with sleep and behaviors of their paired partners with dementia
Carol A Manning, Anna Youngkin, Mark Quigg
This pilot study examined sleep patterns in people with dementia and their carers. While daily activity levels were similar, sleep studies showed that carers had shorter total sleep time, lower sleep efficiency, and longer sleep onset compared to people with dementia.