Childhood Dementia: The Collective Impact and the Urgent Need for Greater Awareness and Action

Elvidge KL Christodoulou J Farrar MA , et al. The collective burden of childhood dementia: A scoping review. Brain J Neurol. 2023;146:4446–4455. https://doi.org/10.1093/brain/awad242

Verity C Baker E Maunder P Pal S Winstone AM . Differential diagnosis of progressive intellectual and neurological deterioration in children. Dev Med Child Neurol. 2021;63:287–294. https://doi.org/10.1111/dmcn.14691

Warmerdam HAG Termeulen-Ferreira EA Tseng LA , et al. A scoping review of inborn errors of metabolism causing progressive intellectual and neurologic deterioration (PIND). Front Neurol. 2020;10:1369. https://doi.org/10.3389/fneur.2019.01369

Nevin SM McGill BC Kelada L , et al. The psychosocial impact of childhood dementia on children and their parents: A systematic review. Orphanet J Rare Dis. 2023;18:277. https://doi.org/10.1186/s13023-023-02859-3

Djafar JV Smith NJ Johnson AM , et al. Characterizing common phenotypes across the childhood dementia disorders: A cross-sectional study from two Australian centers. Pediatr Neurol. 2023;149:75–83. https://doi.org/10.1016/j.pediatrneurol.2023.09.006

Australian Institute of Health and Welfare. Australia’s children, cancer incidence and survival. Published 2022. Accessed September 3, 2024. https://www.aihw.gov.au/reports/children-youth/australias-children/contents/health/cancer-incidence-survival

O’Leary M Krailo M Anderson JR Reaman GH . Progress in childhood cancer: 50 years of research collaboration, A report from the Children’s Oncology Group. Semin Oncol. 2008;35:484–493. https://doi.org/10.1053/j.seminoncol.2008.07.008

Childhood cancer inequalities in the WHO European Region. n.d. Accessed September 3, 2024. https://www.who.int/europe/publications/i/item/9789289057615

Childhood Dementia Initiative. Childhood dementia global clinical trial landscape analysis. 2024. https://d1iap1m2kaw9nt.cloudfront.net/4a6ad140acea03a8b877380ea7852805.pdf

Childhood Dementia Initiative. Australian childhood dementia research funding report 2024. 2024. https://d1iap1m2kaw9nt.cloudfront.net/1b2dbceaa6229f05e0cbf529c8fe6117.pdf

Childhood Dementia Initiative. Childhood Dementia Matters: Family perspectives on the term ‘childhood dementia.’ 2023. https://d1iap1m2kaw9nt.cloudfront.net/2211193c5ccb2c0bd2896ef8734ef960.pdf

World Health Organization. Global action plan on the public health response to dementia 2017–2025. World Health Organization; 2017.

Livingston G Huntley J Liu KY , et al. Dementia prevention, intervention, and care: 2024 report of the Lancet Standing Commission. Lancet. 2024;404:572–628. https://doi.org/10.1016/S0140-6736(24)01296-0

CommonAge. Dementia in the commonwealth. 2024. https://www.commage.org/sdm_downloads/dementia-in-the-commonwealth/

Child Dementia Initiative. Research funding recipients announced. https://www.childhooddementia.org/news/research-funding-recipients-announced (accessed September 9, 2024).

Childhood Dementia Initiative. Childhood dementia information for health and care professionals. accessed November 12, 2024. https://www.childhooddementia.org/health-professionals

Atee M Whiteman I Lloyd R Morris T . Behaviours and psychological symptoms of childhood dementia: Two cases of psychosocial interventions. Palliat Care Soc Pract. 2024;18:26323524241273492. https://doi.org/10.1177/26323524241273492