Autism, Dementia, and Post-Diagnostic Support: A Consensus Report from the Second International Summit on Intellectual Disabilities and Dementia

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Bibliographic Details
Title: Autism, Dementia, and Post-Diagnostic Support: A Consensus Report from the Second International Summit on Intellectual Disabilities and Dementia
Language: English
Authors: Matthew P. Janicki (ORCID 0000-0003-1053-1748), Philip McCallion (ORCID 0000-0001-5129-6399), Nancy Jokinen (ORCID 0000-0002-4662-3049), Frode Kibsgaard Larsen (ORCID 0000-0003-4929-4137), Dawna T. Mughal (ORCID 0009-0008-7665-1519), Kathryn P. Service, Tiziano Gomiero, Christina N. Marsack-Topolewski (ORCID 0000-0002-8178-2897), Karen Watchman (ORCID 0000-0003-0000-3589), Flavia H. Santos (ORCID 0000-0003-2592-9038), Seth M. Keller, Shahin Shooshtari, Anupam Thakur, Vikram Palanisamy
Source: Autism: The International Journal of Research and Practice. 2026 30(6):1635-1653.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Peer Reviewed: Y
Page Count: 19
Publication Date: 2026
Sponsoring Agency: National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) (DHHS/CDC)
Contract Number: 1NU58DP0067820100
Document Type: Journal Articles
Reports - Research
Descriptors: Autism Spectrum Disorders, Dementia, Adults, Multiple Disabilities, Caregivers, Caregiver Training, Caregiver Role, Drug Therapy, Clinical Diagnosis, Barriers, Environmental Influences
DOI: 10.1177/13623613261416670
ISSN: 1362-3613
1461-7005
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.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1506442
Database: ERIC
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