International Intellectual Disabilities & Dementia Summit Secretariat

This page is dedicated to news and announcements from the Secretariat of the International Intellectual Disability & Dementia Summits

Secretariat of the International Summits on Intellectual Disability and Dementia

About Us...

Our mission is to serve as a coordinating body for past and successive International Summits on Intellectual Disability and Dementia.

Organizing Members of the Secretariat:

Matthew P. Janicki, Ph.D. (University of Illinois Chicago, USA)

Nancy Jokinen, Ph.D. (University of Northern British Columbia, Canada)

Frode Kibsgaard Larsen, Ph.D.(c) (Norwegian National Centre for Ageing and Health, Norway)

Philip McCallion, PhD. (Temple University, USA)

Eimear McGlinchey, Ph.D. (Trinity College Dublin, Ireland)

Alyt Oppewal, Ph.D. (Erasmus University Medical Center, the Netherlands)

Karen Watchman, Ph.D. (University of Stirling, Scotland)

In 2016, an informal group of researchers met and organized the initial International Summit on Intellectual Disabilities and Dementia in Glasgow Scotland. Information about the initial Summit and its work and outputs can be found here. The group's planning for subsequent Summits was interrupted by the global shut-down stemming from the COVID-19 pandemic. In 2023 it was decided to reinvigorate the Summits as the result of an exceptionally kind offer by the Reena Organization in Toronto, Canada, which wanted to hold a significant scientific meeting on older age issues and intellectual disability in association with their celebration of 50 years of service to the Metropolitan Toronto community. This resulted in the 2nd International Summit on Intellectual Disabilities and Dementia. For more information on this Summit.

Thus was born the impetus for formalizing planning and oversight of subsequent Summits. The organizing participants opted to formalize a Secretariat to undertake that role and serve a point of contact and coordination. The Summit Secretariat was formally organized on October 25, 2023 in Toronto, Ontario Canada.

The Secretariat is currently engaged in producing a report from the Summit, which will be posted shortly.

The virtual Secretariat can be contacted via this page, or by email to Dr. Nancy Jokinen, Secretariat Correspondence Official. Our postal address is Summit Secretariat, PO Box 862, Rockport, ME 04856 USA.

Mail

Transcript - Day 1

Transcript - Day 2

Summit Secretariat issues report on autism and dementia

Autism, aging, and dementia: A consensus report of the Autism/Dementia Work Group of the 2nd International Summit on Intellectual Disabilities and Dementia.

This summative 112-page report synthesizes what is known about the nature of autism (or ‘autism spectrum disorder’) and inherent later-age neuropathologies, particularly dementia, and explores potential genetic, neurobiological, and environmental factors associated with dementia and their effects on the lifespan and lived experience of older adults with autism. Covered are various factors that influence the onset of dementia, diagnostics, and a range of post-diagnostic supports.

To read the Executive Summary

To read the Norwegian language version

Statement on Autism and Dementia

The prevailing viewpoint, derived from current research, is that there is no overarching basis or foundation supporting a notable increased risk for any specific form of dementia in individuals with autism. As individuals with autism age, akin to the general population, some may undergo assessments and receive dementia diagnoses; however, such cases do not seem inherently predisposed to any specific brain disease genetically or otherwise. It is worth noting that adults with co-occurring conditions, such as Down syndrome and some intellectual disabilities, exhibit elevated risk markers, potentially leading to higher rates of clinical dementia in older age. In acknowledging this, the 2nd International Summit on Intellectual Disability and Dementia underscores the impact of social determinants of health, adverse life experiences, and stressors in compromising cognitive health during later stages of life potentially influencing cognitive decline and premature mortality. However, the research is still incipient and inconclusive regarding whether such factors determine early, faster, or worse dementia outcomes in autistic adults in comparison to the general population. The Summit supports evidence-based practices to enhance social competencies, commitment to healthy lifestyles, and provide living supports that enhance personal capabilities, whenever consent and choices are sought, minimizing exposure to unsafe environments and risk-heightening behaviors, and encouraging adherence to life practices that promote mental and physical health wellness.