The psychosocial impact of childhood dementia on children and their parents: a systematic review

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.

Citation:
Nevin SM, McGill BC, Kelada L, ……. Baynam G, Katz NT, Donovan L, et al. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet J Rare Dis. 2023;18(1)

Keywords:
Child; Dementia; Healthcare; Neurodegeneration; Parent; Psychosocial

Abstract:
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.