Autism,dementia,and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia

Abstract

Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults—many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues—and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population.

Lay Abstract

Autistic adults who develop dementia often experience challenges that are not well addressed by current dementia care systems. After a dementia diagnosis, people may need help with memory, communication, behavior changes, and daily living. For autistic adults, these supports must be adapted to their individual sensory sensitivities, communication styles, and social differences. This article reports on the work of an international group of researchers, clinicians, and advocates who met during the Second International Summit on Intellectual Disability and Dementia. The group examined how post-diagnostic support for autistic adults with dementia could be improved. They reviewed existing evidence, identified key barriers to care, and proposed strategies to strengthen services in areas such as medication use, environmental design, caregiver training, and personalized care planning. The report emphasizes that many autistic adults also have intellectual disabilities, mental health conditions, or long-term physical health issues, which can make care more complex. Current dementia care frameworks often overlook these overlapping needs, resulting in limited or unsuitable supports. The authors call for more research, workforce training, and autism-informed policy changes to ensure that post-diagnostic care is equitable, individualized, and responsive. Enhancing understanding and adapting support can help autistic adults with dementia maintain dignity, comfort, and quality of life.