Children living with childhood dementia and their families experience broad physical and psychosocial impacts associated with the complex nature of these ultra-rare disorders. Our world-first systematic review aims to investigate the international evidence and to integrate research focusing on the collective psychosocial experiences shared by children with dementia and their families. 

We searched Medline, Embase, PsychInfo and CINAHL using keywords relating to the patient population (children with conditions that cause childhood dementia and their families) and the outcomes of interest (psychosocial, psychological, healthcare, information, support, quality of life, coping, mental health). We limited the search to peer-reviewed articles which investigated the impacts of childhood dementia as reported from the parent perspective and published in English.

Results: Our search produced 2005 peer-reviewed articles and we identified 18 articles from nine countries (Canada, Netherlands, Italy, Germany, USA, Ireland, UK, Sweeden, France) as eligible for inclusion. We extracted data from the articles into three thematic categories focusing on (1) healthcare experiences, (2) psychosocial impacts, and (3) psychoeducation needs. 

Parents highlighted extensive challenges navigating their child’s care, accessing timely therapies, and connecting with clinicians who are knowledgeable regarding their child’s diagnosis. Parents reported difficulties balancing multiple roles including managing their child’s complicated and progressive condition and caring for siblings, whilst simultaneously grieving loses associated with the child’s deterioration. Limited treatment options, combined with lack of information about their child’s prognosis, compromised parents’ coping capacity and increased social isolation. Unmet information and support needs were associated with chronic levels of stress, poorer mental health outcomes, and lower satisfaction with healthcare services. 

The integration and synthesis of research documenting the collective psychosocial needs of children and families will be crucial for developing high-quality and sensitively tailored psychosocial resources to optimise quality of life outcomes for children with dementia and their families.