Families' lived experiences
Childhood Dementia Family Experiences in Western Australia, 2024
This report explores experiences of children with dementia and their families in Western Australia (WA). In 2023, Childhood Dementia Initiative conducted a participatory research event in Perth, WA. The consultation used an adaptation of The Long Table method. Parents of children with dementia discussed their experiences with health systems in WA, while stakeholders from related systems and services listened. This report provides a thematic analysis of the discussion, with the intent that it be used as a basis for future improvements.
The key findings included the following themes:
- Profound ongoing loss and anticipatory grief
- Lack of information and support
- Isolation and loneliness
- Challenges with health systems and services
- Fighting and Advocating
- Inequity and difficulties accessing clinical trials
- Turning Pain into Purpose
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
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
State of Childhood Dementia in Australia 2024
This report unveiled the devastating reality faced by Australia’s children with dementia. It highlighted the urgent need for a coordinated national approach to improve survivorship and quality of life for children with dementia.
The report revealed that, despite childhood dementia’s severe impacts, it remains a largely overlooked and underfunded issue. Key findings include:
- That there are no treatments and no cure, and there has been no notable improvement in survival rates for children with dementia.
- Children’s health care and support needs aren’t being met in Australia.
- The psychosocial impacts of childhood dementia on Australian families are severe.
- A coordinated national approach is required to address these significant issues.
Childhood Dementia Family Experiences in Western Australia, 2024
This report explores experiences of children with dementia and their families in Western Australia (WA). In 2023, Childhood Dementia Initiative conducted a participatory research event in Perth, WA. The consultation used an adaptation of The Long Table method. Parents of children with dementia discussed their experiences with health systems in WA, while stakeholders from related systems and services listened. This report provides a thematic analysis of the discussion, with the intent that it be used as a basis for future improvements.
The key findings included the following themes:
- Profound ongoing loss and anticipatory grief
- Lack of information and support
- Isolation and loneliness
- Challenges with health systems and services
- Fighting and Advocating
- Inequity and difficulties accessing clinical trials
- Turning Pain into Purpose
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
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.
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.
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.
‘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.
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.
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).
Newborn screening and childhood dementia, June 2023
This outlines Childhood Dementia Initiative's position on newborn screening.
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.
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.
Presentations and Posters
Webinar recording: Sharing Childhood Dementia Data and Patient Samples to Accelerate Research Nov 2024
This webinar was held on 13 November 2024 and explored approaches to accelerate childhood dementia research through the sharing of patient samples and data. A distinguished panel of experts discussed the crucial role of patient samples, brain banks, and virtual registries to advance research.
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.
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.
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.
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.
Watch the webinar
Poster: Alzheimer's Association International Conference
Presented at the AAIC in July 2023.
Poster: International Congress of Genetics
This poster was presented at the International Congress of Genetics (ICG) in July 2023.
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.
