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Navigating the complex landscape of childhood dementia: caregiver psychological well-being, grief, and health system challenges.

S. Nevin,L. Kelada,Kristina L. Elvidge,Megan Maack,Gail Hilton,J. Kershaw,Ellie Da Ros,Nancy Briggs,Michelle A. Farrar,Claire E. Wakefield

Published 2025 in Journal of Pediatric Psychology

ABSTRACT

OBJECTIVE This study used the Supportive Care Needs Framework (SCNF) to examine the psychological well-being of caregivers of children with dementia and their experiences navigating health and disability systems, including financial hardship. METHODS Caregivers and bereaved caregivers, whose child died from a dementia, completed an online questionnaire and semi-structured interview. We adopted a convergent, mixed-methods approach, combining quantitative and qualitative results to enhance the interpretation of caregivers' experiences and priorities. RESULTS Seventy-six caregivers completed the questionnaire, 19 of whom had more than one child affected and 15 of whom were bereaved caregivers. Eighteen caregivers (14 females/4 males; 7 bereaved/11 non-bereaved) participated in interviews. Quantitative data highlighted elevated psychological distress, with 70% scoring moderate-to-severe anxiety, 30% meeting criteria for severe pre-loss grief, and 39% of bereaved caregivers reporting severe, prolonged grief. Integrated qualitative and quantitative data underscored that insufficient psychosocial services and inadequate information navigating and accessing essential health and disability services markedly exacerbated caregiver distress, especially in the context of their child's multifaceted, complex, and progressive needs. We identified key domains evidencing caregivers' unmet needs and priorities, emphasizing the urgent need for specialized models of care and tailored family-centered psychosocial supports, responsive to the fast-changing and progressive needs of children and families. CONCLUSION Caregivers of children with dementia experience critical unmet needs and shoulder enduring burdens throughout the course of their child's progressive decline and following bereavement. Coordinated centers of expertise, equipped to deliver expert medical and integrated psychosocial support, are essential to more effectively support families affected by childhood dementia.

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