International Summit on Intellectual Disability and Dementia

The International Summit on Intellectual Disability and Dementia, held at the University of the West of Scotland, Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability affected by dementia. 

A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas:  (1) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with intellectual disability), (2) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic support community, dementia-capable care practice, and end-of-life care practices), and (3) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with Intellectual disability in national plans, and family caregiver issues).  

 

Outcomes included recommendations incorporated into series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with intellectual disability affected by dementia, as well as their families. 

                                        Table 1: Key Recommendations from Summit by Area of Focus

Members of the International Summit

Cathy Asante (Scotland), Anna Berankova (Czech Republic), Kathleen Bishop (USA), Nicole Cadovius (USA), Sally-Ann Cooper (Scotland), Tonni Coppus (the Netherlands), Jim Crowe (Wales), Karen Dodd (UK), Juan Fortea (Spain), Claudia Gaertner (Germany), Kiran Haksar (Scotland), Flavia Heloisa Santos (Brazil), Mary Hogan (USA), Matthew P. Janicki (USA), Nancy Jokinen (Canada), Seth M. Keller (USA), Frode Larsen (Norway), Ronald Lucchino (USA), Philip McCallion (USA), Mary McCarron (Ireland), Peter Mittler (UK), Jim Pearson (UK), Sam Quinn (Scotland), Anne-Sophie Rebillat (France), Evelyn Reilly (Ireland), Kathy Service (USA), Michael Splaine (USA), Sandy Stemp (Canada), Andre Strydom (UK), Gomiero Tiziano (Italy), Leslie Udell (Canada), and Karen Watchman (Scotland)

Bibliography of Summit Articles

Watchman, K., Janicki, M.P., Splaine, M., Larsen, F.K., Gomiero, T., & Lucchino, R. (2017). International summit consensus statement: Intellectual disability inclusion in national dementia plans. American Journal of Alzheimer's Disease and Other Dementias, 32(4), 230-237.  doi: 10.1177/1533317517704082

Janicki, M.P., McCallion. P., Splaine, M., Santos, F.H., Keller, S.M., & Watchman, K. (2017). Consensus statement of the International Summit on Intellectual Disability and Dementia related to nomenclature.  Intellectual and Developmental Disabilities, 2017, 55(5), 338–346.  DOI: 10.1352/1934-9556-55.5.338.

McCallion, P. Hogan, M., Santos, F H., McCarron, M., Service, K., Stemp, S., Keller, S., Fortea, J., Bishop, K., Watchman, K., Janicki, M.P. and the Working Group of the International Summit on Intellectual Disability and Dementia.  (2017). Consensus statement of the international summit on intellectual disability and dementia related to end-of-life care in advanced dementia.  Journal of Applied Research in Intellectual Disability, 30(6), 977-1164; DOI: 10.1111/jar.12349.

Service KP, Watchman K, Hogan M, Cadovius N, Janicki M & Berankova A (2017). Dying well with an intellectual disability and dementia?  Journal of Dementia Care, 25(4), July/August, 28-31.  Request copy.

Watchman, K., & Janicki, M.P., and the members of the International Summit of Intellectual Disability and Dementia. (2017).  The intersection of intellectual disability and Dementia: Report of the International Summit on Intellectual Disability and Dementia.  The Gerontologist, 2019, 59(3), 411–419. https://doi.org/10.1093/geront/gnx160

Dodd, K., Watchman, K., Janicki, M.P., Coppus, A., Gaertner, C., Fortea, F., Santos, F.H., Keller, S.M., & Strydom, A. (2017). Consensus Statement of the International Summit on Intellectual Disability and Dementia related to post-diagnostic support. Aging & Mental Health, 2018 Nov;22(11):1406-1415. doi: 10.1080/13607863.2017.1373065. Epub 2017 Sep 7.

 

McCarron, M., McCallion, P., Coppus, A., Fortea, J., Stemp, S., Janicki, M.P., & Watchman, K. (2018).  Supporting advanced dementia in people with Down syndrome and other intellectual disability: Consensus Statement of the International Summit on Intellectual Disability and Dementia. Journal of Intellectual Disability Research, 62(7), 617-624. DOI:10.1111/jir.12500.

McCarron, M., McCallion, P., Watchman, K., Janicki, M.P., Coppus, A., Service, K., Fortea, J., Hogan, M., Reilly, E., & Stemp, S. (2018).  Quality care for people with intellectual disability and advanced dementia: Guidance on service provision.  Journal of Palliative Medicine, 2018, 21(9), 1344-1352, DOI: 10.1089jpm.2017.0442.

Jokinen, N., Gomiero, T., Watchman, K., Janicki, M.P., Hogan, M., Larsen, F., Berankova, A., Santos, F.H., Service, K., & Crowe, J. (2018). Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia. Journal of Gerontological Social Work, 61(4), 411-431. DOI: 10.1080/01634372.2018.1454563.

Watchman, K., Janicki, M.P., Hogan, H., Udell, L., Quinn, S., & Beránková, A. (2018).  Consensus statement of the international summit on intellectual disability and dementia on valuing the perspectives of persons with intellectual disability.  Journal of Intellectual Disabilities, 2019, 23(2), 266-280. doi: 10.1177/1744629517751817.

Janicki, M.P., Watchman, K., & Fortea, J., (2018). Principales Conclusiones Acordadas Durante La Cumbre Sobre Discapacidad Intelectual y Demencia [Main conclusions agreed during the Summit on Intellectual Disability and Dementia].  Siglo Cero, 49(2), n.º 266, abril-junio, 115-122.  DOI: http://dx.doi.org/10.14201/scero2018492115122.

Dos Santos, F. H., Janicki, M.P., & Watchman, K.  (2018).  Highlights from the International Summit on Intellectual Disability and Dementia: Implications for Brazil.  Dementia & Neuropsychologia, Oct-Dec, 12(4), 329-336.  doi: http://dx.doi.org/10.1590/1980-57642018dn12-040001.

     National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                           www.the-ntg.org                                                       Edited 12/3/20

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