Strengthening health-care pathways for people with Down syndrome

People with Down syndrome are living longer than ever before because of improved management of concomitant health conditions. However, they continue to experience health inequalities across the life course, and health systems remain poorly equipped to meet the evolving and complex needs of adults with Down syndrome. Fragmented services, diagnostic overshadowing, absence of reasonable adjustments, and insufficient professional training about disability undermine health access, quality, outcomes, and autonomy. Families and caregivers of people with Down syndrome often bear a high burden of care, with inadequate support from health systems. This Review presents evidence that many of the health gaps encountered by adults with Down syndrome are avoidable through improvements in health systems. We propose practical, life-course principles for health-care professionals to strengthen health-care pathways for people with Down syndrome, informed by lived experience, policy guidance, and case studies. Promising practices include structured health-care transition from paediatric to adult care services, annual health checks, inclusive healthy lifestyle and rehabilitation programmes, workforce training, and supported decision-making approaches. Inclusive and adapted approaches are also required in specific specialities, such as sexual and reproductive health care, dementia care, and end-of-life planning, to meet the needs of people with Down syndrome. Strengthening health-care pathways to deliver person-centred, rights-based care for adults with Down syndrome is essential to optimise their health, wellbeing, and quality of life across the life course.