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

被引：0
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作者：
Suzanne M. Nevin
Brittany C. McGill
Lauren Kelada
Gail Hilton
Megan Maack
Kristina L. Elvidge
Michelle A. Farrar
Gareth Baynam
Naomi T. Katz
Leigh Donovan
Sarah Grattan
Christina Signorelli
Kaustuv Bhattacharya
Kenneth Nunn
Claire E. Wakefield
机构：
[1] UNSW Medicine and Health,School of Clinical Medicine
[2] Discipline of Paediatrics and Child Health,Behavioral Sciences Unit, Kids Cancer Centre
[3] Sydney Children’s Hospital,Department of Neurology
[4] Childhood Dementia Initiative,Faculty of Health and Medical Sciences, Division of Paediatrics
[5] Sydney Children’s Hospital,Rare Care Centre
[6] University of Western Australia,Victorian Paediatric Palliative Care Program
[7] Perth Children’s Hospital,Genetic Metabolic Disorders Service
[8] Telethon Kids Institute,Faculty of Medicine and Health, Discipline of Genomics
[9] Royal Children’s Hospital,Department of Psychological Medicine
[10] Sydney Children’s Hospitals’ Network,undefined
[11] Sydney University,undefined
[12] Children’s Hospital at Westmead,undefined
来源：
Orphanet Journal of Rare Diseases | / 18卷
关键词：
Child; Neurodegeneration; Dementia; Psychosocial; Healthcare; Parent;
D O I：
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摘要：
A synthesis of the shared psychosocial experiences and impacts of conditions causing childhood dementia is warranted.Parents share a tranche of overlapping challenges owing to limited access to psychosocial resources for their child’s dementia condition.Severe neurocognitive decline is associated with higher parent psychological distress and isolation.Coordinated psychosocial interventions are required to improve outcomes for the family unit.Growing childhood dementia public awareness may activate earlier access to coordinated, sustainable and integrated supports.
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