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. 2023 Sep 7;18(1):277.
doi: 10.1186/s13023-023-02859-3.

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

Suzanne M Nevin  1   2 , Brittany C McGill  3   4 , Lauren Kelada  3   4 , Gail Hilton  5 , Megan Maack  5 , Kristina L Elvidge  5 , Michelle A Farrar  3   6 , Gareth Baynam  7   8   9 , Naomi T Katz  10 , Leigh Donovan  3   4 , Sarah Grattan  3 , Christina Signorelli  3   4 , Kaustuv Bhattacharya  11   12 , Kenneth Nunn  13 , Claire E Wakefield  3   4
Affiliations

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

Suzanne M Nevin et al. Orphanet J Rare Dis. .

Abstract

Background: 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.

Methods: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs.

Results: Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. 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.

Conclusion: This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

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

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Conflict of interest statement

Gail Hilton is the Head of Programs at the Childhood Dementia Initiative Foundation. Megan Maack is the Chief Executive Officer at the Childhood Dementia Initiative Foundation. Kris Elvidge is the Head of Research at the Childhood Dementia Initiative Foundation.

Figures

Fig. 1
Fig. 1
PRISMA diagram
Fig. 2
Fig. 2
Thematic categories of parents experiences
Fig. 3
Fig. 3
Trajectory of psychosocial needs
See this image and copyright information in PMC

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