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

Citation

Janicki MP, McCallion P, Jokinen N, Larsen FK, Mughal DT, Service KP, Gomiero T, Marsack-Topolewski CN, Watchman K, Santos FH, Keller SM, Shooshtari S, Thakur A & Palanisamy V (2026) Autism, dementia, and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia. Autism. https://doi.org/10.1177/13623613261416670

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.

Keywords
ASD; autism; dementia; environmental adaptations; long-term care; non-pharmacological interventions; post-diagnostic supports

Journal
Autism