‘Fighting every day’: exploring caregiver quality of life and perspectives on healthcare services for children with dementia – a cross-sectional, mixed-methods study

Objective To explore quality of life outcomes for caregivers of children with childhood dementia including the positive and negative impact of caregiving. The secondary aim was to explore caregivers’ perspectives on healthcare services for children with dementia. Design Cross-sectional, mixed-methods study with analyses of quantitative and qualitative data collected via online survey. Setting Australian tertiary referral children’s hospitals, clinics and community advocacy groups. Patients 40 caregivers of children with dementia. Interventions The survey was developed by a multidisciplinary team of clinicians including paediatric neurologists and behavioural scientists with experience in caring for families with childhood dementias and mixed-methods research. Main outcome measures Surveys assessed caregiver-reported health-related quality of life, psychological distress, the impacts of caregiving and perspectives on healthcare services and how they may be improved for children with dementia. Results Psychological distress was reported by 72.5%, caregiver stress by 67%, chronic pain or discomfort by 43% and for 87.5% their child’s condition had a moderate or severe impact on their ability to do regular daily activities. Caregivers voiced a desire for more integrated care, increased general awareness and education around childhood dementia and a greater need for more trained support services. Conclusions Caregivers of children with dementia experience high levels of psychological distress, physical and social consequences. This study highlights the need for integrated care and psychosocial support to efficiently connect children and families with appropriate healthcare services and resources.