Topic guides: Childhood dementia: Content

About

What is childhood dementia by Childhood Dementia Initiative
Disorders that cause childhood dementia are neurodegenerative (debilitating and progressive) and impair mental function. They are complex disorders, with high care needs and they cause a poor quality of life that affects the whole family.

Childhood Dementia Knowledgebase, Childhood Dementia Initiative
The Childhood Dementia Knowledgebase is a relational database that provides key statistics for each of the 100+ conditions that cause childhood dementia. This includes:
Incidence, Prevalence, Life expectancy, Age of onset and diagnosis, Genetic cause, and Signs and symptoms.
Childhood dementia frequently asked questions, Childhood Dementia Initiative
- Is childhood dementia the same as childhood Alzheimer’s?
- How is childhood dementia diagnosed?
-What are the initial signs of childhood dementia?
Childhood dementia factsheet
This factsheet gives an overview of key statistics on childhood including prevalence and incidence.

Dementia Australia

Dementia Australia
Caregiver burden for childhood dementia is significant and Dementia Australia offers a range of resources which families can access including a free dementia kit and confidential support via the National Dementia Helpline 1800 100 500.
Childhood dementia
An overview of Childhood dementia.

Self-care for carers by Dementia Australia
It is important for families and carers looking after themselves while they are caring for someone with dementia. This page discusses some ways to manage stress and to ensure that support is there so that you can continue in your caring role.

Articles, Research and Reports

State of Childhood Dementia In Australia 2024
A groundbreaking new Australian report by leading non-profit Childhood Dementia Initiative, titled, ‘State of Childhood Dementia in Australia 2024’, has unveiled the devastating reality faced by Australia’s children with dementia and calls for urgent action to address systemic barriers to cures, treatments and adequate healthcare and support.

Childhood dementia: the case for urgent action by Childhood Dementia Initiative
Publication Date: 2020
This white paper highlights the size, scale and wide-reaching impacts of childhood dementia. By bringing together the many individual ‘siloed’ conditions and quantifying the associated collective economic burden, the report aims to demonstrate the real and considerable health problem that childhood dementia poses to families and society, both now and in the future to better inform decision-making, enhance collaborative efforts, and serve as a catalyst for meaningful action.
Childhood Dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society by Childhood Dementia Initiative
Publication Date: 2020
This is the first paper to quantify the burden of disease in a range of conditions that cause childhood dementia in any healthcare system worldwide. The analysis undertaken in this study defines and identifies the Australian population affected by childhood dementia and estimates the resultant direct and indirect costs incurred to the Australian economy currently and over the next decade.
Childhood Dementia Symposium 2023 Report by Childhood Dementia Initiative
Publication Date: 2023
Childhood Dementia Initiative hosted the 2nd Childhood Dementia Symposium on 14 March 2023, which was attended by 100 clinicians, researchers, industry, and patient representatives, all in person in Sydney. Three sessions of presentations inspired new ideas and provoked thoughtful discussion.
‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services by Nous Group (Nous) for the Childhood Dementia Initiative
Publication Date: 2023
A new report has revealed that families affected by childhood dementia experience significant challenges accessing appropriate care and support in Australia.

The collective burden of childhood dementia: a scoping review (2023)
Childhood dementia is a devastating and under-recognized group of disorders with a high level of unmet need. Typically monogenic in origin, this collective of individual neurodegenerative conditions are defined by a progressive impairment of neurocognitive function, presenting in childhood and adolescence. This scoping review aims to clarify definitions and conceptual boundaries of childhood dementia and quantify the collective disease burden.
Elvidge, K. L., Christodoulou, J., Farrar, M. A., Tilden, D., Maack, M., Valeri, M., Ellis, M., Smith, N. J. C., & Childhood Dementia Working Group (2023). The collective burden of childhood dementia: a scoping review. Brain : a journal of neurology, 146(11), 4446–4455. https://doi.org/10.1093/brain/awad242
The psychosocial impact of childhood dementia on children and their parents: a systematic review (2023)
Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia.
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
The Australian childhood dementia study (2002)
Nunn K., Williams K. & Ouvrier R. (2002). The Australian childhood dementia study. European Child and Adolescent Psychiatry, 11, 63-70.

Video content

Fighting the Rare (2023), Documentary on Lafora disease. Lafora Disease is a rare neurodegenerative condition affecting children. It is terminal; there is no cure. Healthy children first show symptoms in their early teens, epilepsy followed by cognitive decline (dementia). a documentary on the importance of biomedical research to find treatments for rare diseases. Fighting the Rare is a glimpse into research on Lafora disease, a rare neurodegenerative condition, through the testimonies of researchers, patients and their relatives. It is a must-watch for the rare disease and health community.

Websites

Childhood Dementia Initiative
This site is the place to join the national family network. The site includes information around what is childhood dementia along with other important information and contacts.
Dementia Support Australia (DSA)
If you are living with childhood dementia or if you are a care worker, health professional or family carer supporting a child or young person with dementia experiencing behaviours and psychological changes that are impacting their care you can contact DSA for support.
Sanfilippo Children's Foundation
Sanfilippo is a rare genetic condition that causes fatal brain damage. It is a type of childhood dementia.
Carers Australia
A comprehensive site which includes a series of fact sheets for supporting your child. These include topics such as "Sharing the diagnosis" and "Self care".
Carer Gateway
When contacting Carer Gateway, you will be connected with a Australia-wide network of Carer Gateway service providers. They will talk through what you need and help you to find local services and support to help you.
Rare Voices Australia
Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for people living with a rare disease.
Disability Gateway
The Disability Gateway has information and services to help people with disability, their family, friends and carers, to find the support they need in Australia.
NDIS
The NDIS provides funding to eligible people with disability.

Books

Max and Abby by Ineka Whiteman, illustrated by Deborah Moore
ISBN: 9780645525199
Publication Date: 2022
Max and Abby is the story of Abby and her little brother Max who lives with Batten disease. Through Abby's eyes, we see how childhood dementia influences her relationship with her brother and parents as Max requires increasing care.
The book helps explain Batten disease and childhood dementia, and the challenging cognitive and physical changes that occur in children over time. It aims to start a discussion about the very normal feelings a sibling would have in this situation.
Dementia in Children, Teenagers and Young Adults - A guide for parents, teachers and care professionals. by Jackie Imrie and others
Publication Date: 2009
This guide addresses the dementia issues that many families experience, especially those who have children with JNCL. The book explains what can cause dementia, symptoms, and different therapy interventions.

Resources for health professionals

5 requests from families: a guide on how to work together, Childhood Dementia Initiative
This information sheet summarises for you the 5 major themes collected during a series of focus groups and interviews with parents and carers. These focus groups were conducted in 2021 and 2022 to collect information on how health and care professionals can work with families.
Working with children and families, Childhood Dementia Initiative
Find resources and information to support you in your role.