International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD1, Matthew P. Janicki, PhD2, Michael Splaine, MA3, Frode K. Larsen4, Tiziano Gomiero, PhD5 and Ronald Lucchino, PhD6

1 University of Stirling, Scotland, UK
2 University of Illinois at Chicago, USA
3 Splaine Consulting, Columbia, Maryland USA
4 Norwegian National Advisory Unit on Ageing and Health, Oslo, Norway
5 ANFFAS Trentino Onlus, Trento, Italy
6 Utica College, Sarasota, Florida USA



The WHO has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia in Scotland reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that their carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes and greater advocacy is required from national organisations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

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