Families' lived experiences

Childhood Dementia: Family experiences of health systems in New South Wales, 2024

This report explores family experiences of the health system for children with dementia in New South Wales (NSW), Australia. It is intended to be used as input into further consultation and exploration by NSW Health and other bodies to improve systems of care in NSW.

Findings are based on a series of roundtable discussions and interviews and a survey with parents and caregivers. Two key issues were identified: a severe lack of knowledge and understanding, and chronic absence of expert care. This resulted in the following impacts for families:

  • increased parental burden
  • disempowerment of families
  • risk to children’s safety
  • neglect and inequity of care

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The psychosocial impact of childhood dementia on children and their parents: a systematic review, Orphanet Journal of Rare Diseases, 2023

This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia. It found psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child’s condition trajectory.

Reference: Nevin, S.M., McGill, B.C., Kelada, L. et al. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet J Rare Dis 18, 277 (2023). https://doi.org/10.1186/s13023-023-02859-3

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‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services, March 2023

Commissioned by Childhood Dementia Initiative and developed by international management consultancy, Nous Group, this report gives insight into ‘typical’ family experiences navigating care and support services in Australia. It revealed that families affected by childhood dementia experience significant challenges accessing appropriate care.

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Childhood Dementia Matters Series:

The Childhood Dementia Matters series is published by Childhood Dementia Initiative and provides insight into various aspects of the lived experience of families who have children with dementia. Learn more about this series.

Childhood Dementia Matters 1: Palliative care perspectives and experiences, November 2021

This document provides a summary of the key issues and comments that emerged from a consumer roundtable hosted by Palliative Care Australia and Childhood Dementia Initiative. The roundtable provided participants with an opportunity to discuss their perspectives on paediatric palliative care and to highlight their own experiences and challenges. Direct quotes from roundtable participants are presented throughout this summary document.

Download Childhood Dementia Matters 1

Childhood Dementia Matters 2: What families want health professionals and service providers to know, October 2022

This document summarises key themes that emerged during a series of focus groups facilitated by Childhood Dementia Initiative. The focus groups invited participants to share their insights on working with health professionals and service providers. Participants shared challenging and positive experiences and what they most wanted the professionals working with them to know.

Download Childhood Dementia Matters 2

Childhood Dementia Matters 3: Family perspectives on the term ‘childhood dementia’, August 2023

This document summarises key insights that emerged during a series of focus groups, discussion and survey responses facilitated by Childhood Dementia Initiative. Twenty-five individuals from the families of children with dementia participated in total. Family voices and experiences were heard in focus groups, interviews and a short online survey.

Download Childhood Dementia Matters 3

Publications

Childhood Dementia: Family experiences of health systems in New South Wales, 2024

This report explores family experiences of the health system for children with dementia in New South Wales (NSW), Australia. It is intended to be used as input into further consultation and exploration by NSW Health and other bodies to improve systems of care in NSW.

Findings are based on a series of roundtable discussions and interviews and a survey with parents and caregivers. Two key issues were identified: a severe lack of knowledge and understanding, and chronic absence of expert care. This resulted in the following impacts for families:

  • increased parental burden
  • disempowerment of families
  • risk to children’s safety
  • neglect and inequity of care

Read now


Childhood Dementia Global Clinical Trial Landscape Analysis 2024

This analysis covers global clinical trial activity from 2000 to 2023. Despite the huge unmet need, the analysis reveals a severe and continued lack of activity to develop treatments and cures for childhood dementia globally. Research inequity was particularly evident when comparing childhood dementia clinical trials to those for childhood cancer. Beyond this deficiency in activity, 2 additional concerning trends were identified: a slowing of clinical trial activity and trials being stifled by bureaucracy and lack of funding.

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Australian Childhood Dementia Research Funding Report 2024

We analysed the funding allocated to childhood dementia through the Australian Federal Government’s National Health and Medical Research Council (NHMRC) and Medical Research Future Fund (MRFF) from 2017 to 2023. The level of childhood dementia research funding was compared to childhood cancer, another severe group of paediatric diseases which cause a similar number of deaths each year in Australia. The analysis revealed funding inequity and opportunity to advance childhood dementia research.

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The collective burden of childhood dementia: a scoping review, Brain, 2023

This study provides data on incidence, prevalence, mortality, age of onset and diagnosis. Greater clarity on the causes of childhood dementia was also gleaned. This study defines the 145 genetic disorders that cause childhood dementia.

This study was undertaken by experts from the Childhood Dementia Initiative, the University of Adelaide, the University of New South Wales, Murdoch Children’s Research Institute, health economists and leading Australian clinicians. It was published in the international, peer reviewed journal, Brain.

Reference: Elvidge KL, Christodoulou J, Farrar MA, Tilden D, Maack M, Valeri M, Ellis M, Smith NJC; Childhood Dementia Working Group. The collective burden of childhood dementia: a scoping review. Brain. 2023 Jul 20:awad242. doi: 10.1093/brain/awad242. Epub ahead of print. PMID: 37471493.

Read the study


‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services, March 2023

Developed by international management consultancy, Nous Group, this report gives insight into ‘typical’ family experiences navigating care and support services in Australia. It revealed that families affected by childhood dementia experience significant challenges accessing appropriate care.

Learn more and download the report

State of Childhood Dementia 2022

This report explores the state of childhood dementia across policy responses, research progress and the support available for children and families. Published: September 2022.

Learn more about this important report


Childhood Dementia Global Landscape Analysis: Guiding High Value Investment in Global Childhood Dementia Research, May 2022

The Global Landscape Analysis Report prepared by Research Australia gives a global picture of childhood dementia clinical research.

Download the Landscape Analysis


Childhood Dementia: The case for urgent action, November 2020

Childhood Dementia Initiative's white paper highlights the size, scale and wide-reaching impacts of childhood dementia. Importantly, it outlines the overwhelming opportunity to act.

Learn more & download the White Paper


Childhood Dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society, November 2020

This burden of disease study was prepared by THEMA Consulting. The study quantifies for the first time the burden of childhood dementia in Australia on children, their carers, the healthcare system and society.

Download the burden of disease study


Childhood Dementia Symposium 2023 Report, May 2023

This reports on the outcomes and feedback on the 2nd Childhood Dementia Symposium held in Sydney in March 2023. The Symposium brings researchers, clinicians, industry and patient representatives together to accelerate therapeutic options for children with dementia.

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Report of the Inaugural Challenging Childhood Dementia Symposium, March 2022

This report details the outcomes of the Challenging Childhood Dementia Symposium, which was held on 1 March 2022.

Download the Symposium report

Government submissions and position statements

Submission to Inquiry into the recognition of unpaid carers

Childhood Dementia Initiative's submission to the House of Representatives Standing Committee on Social Policy and Legal Affairs inquiry on the provisions and operation of the Carer Recognition Act (2010).

View the submission


Newborn screening and childhood dementia, June 2023

This outlines Childhood Dementia Initiative's position on newborn screening.

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Childhood dementia and the National Disability Insurance Scheme (NDIS), April 2023

Families report that while the NDIS is vital, the progressive needs of their child(ren) are not understood or accommodated. Childhood dementia and the National Disability Insurance Scheme (NDIS) outlines the benefits of appointing specialist advisors, which include efficiencies for the NDIA. It also provides information on current family experiences and the need for change.

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Submission to the Public Consultation Paper for the National Dementia Action Plan, January 2023

Childhood Dementia Initiative has produced a submission in response to the draft National Dementia Action plan. The National Dementia Action Plan is a joint initiative between the Australian Government and Australia's state and territory governments. It is a 10-year plan to put people living with dementia, their families, and carers at the centre of all action on dementia.

View the submission

Presentations and Posters

Webinar recording: Global research inequity and opportunities for childhood dementia April 2024

In this webinar, a global expert panel discussed Childhood Dementia Initiative’s 2024 report which revealed ongoing, pervasive research neglect and inequity. The results of the report were presented. This was followed by a panel discussion and Q&A. 

Watch the webinar


Webinar recording: The collective burden of childhood dementia December 2023

Following the recent publication of a world-first study on the extent of childhood dementia, this webinar discussed the global opportunities, benefits and issues arising from the collective consideration of childhood dementia. A panel of experts contributed to an insightful discussion and answered questions from viewers. 

Watch the webinar


Webinar recording: Brain Organoid Models for Childhood Dementia November 2023

Understanding the mechanisms of childhood dementia conditions and developing effective treatments for them requires model systems for one of the most complex organs: the brain. Innovative solutions that could recapitulate the cellular diversity of the brain include the use of brain organoids. This webinar featured a panel speakers on different types of organoid models and the applications of brain organoids to study conditions that cause childhood dementia and to develop novel treatment options.

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Webinar recording: Unpacking the report 'We don't fit' October 2023

Developed by international management consultancy, Nous Group, for Childhood Dementia Initiative, this report gives insight into ‘typical’ family experiences navigating care and support services in Australia. It revealed that families affected by childhood dementia experience significant challenges accessing appropriate care.

In this Webinar, Gail Hilton, Head of Programs, Quality of Life, Unpacked the report. 

Watch the webinar


Webinar recording: Accessing Emerging Treatments for Childhood Dementia September 2023

With the limited number of treatment options available for childhood dementia disorders, pathways such as Australia's special access scheme (SAS) are an important means to accessing emerging treatments.

This webinar covered a case where the SAS was used to obtain an experimental treatment for a child with dementia. It featured perspectives from the involved clinician, pharmaceutical company, and the family.

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Poster: Alzheimer's Association International Conference

Presented at the AAIC in July 2023.

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Poster: International Congress of Genetics

This poster was presented at the International Congress of Genetics (ICG) in July 2023.

View the poster


Sliding Doors: What Happens When Genomics Isn’t Integrated into Healthcare

This was delivered by Childhood Dementia Initiative CEO, Megan Donnell at the HealthData21 conference in May 2021.

HealthData21 conference presentation