C53 Research and support for young caregivers in families with ALS



Session 5B Carer and family support

Melinda Kavanaugh

Background: The caregiving experience in ALS/MND is complex and can lead to heavy caregiver burden. Yet, little research has focused on the most vulnerable and isolated population of caregivers; children and youth caregivers, or “young caregivers”. This, despite evidence of the adult ALS/MND caregiver experience, highlighting depression, physical toll, and isolation. Young caregivers, between the ages of 5–19, participate in all aspects of daily care, from feeding and bathing, to toileting and transferring, all in relative isolation. A growing body of international young caregiver research highlights the emotional and social impacts, underscoring gaps in evidence-based programming across countries. Yet, the literature has limited information on complex neurological disorders including ALS/MND. A survey of U.S. families in ALS found almost 1/3 of families have a child or youth under age 18 providing care, data reflected in a similar study in South Africa. Recent data suggests sleep disruption and minimal caregiving training is common, increasing anxiety and setting up the potential for long-term health effects in young caregivers. With the lack of treatment or cure, and the potential for earlier age of onset with ALS, attention to the experiences and needs of young caregivers is an important inclusion to the broader study of ALS/MND. This plenary will provide a discussion of current research on children and youth caregivers in ALS/MND, perspectives of the person with ALS, how research has been used to inform evidence-based interventions and supports, and a roadmap for future inclusion of children and youth in caregiving research, programming, and support across the globe.


Source: Abstract Book symposium Perth