Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia

Philip McCallion1 | Mary Hogan2 | Flavia H Santos3 | Mary McCarron4 | Kathryn Service5 | Sandy Stemp6 | Seth Keller7 | Juan Fortea8 | Kathleen Bishop9 | Karen Watchman10 | Matthew P Janicki11 | and the Working Group of the International Summit on Intellectual Disability and Dementia

End-of-life (McCallion et al 2017) J Appl Res Intellect Disabil. 2017;1–5.

ABSTRACT

Background: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. Methods: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. Results: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. Conclusions: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

1. University at Albany, Albany, NY, USA
2. National Task Group on Intellectual Disabilities and Dememtia Practices, Eliot, ME, USA
3. University of Minho, Braga, Portugal
4. Trinity College Dublin, Dublin, Ireland
5. Nurse Practitioner Consultant, Northampton, MA, USA
6. Reena Foundation, Toronto, ON, Canada
7. American Academy of Developmental Medicine and Dentistry, Lumberton, NJ, USA
8. Catalan Foundation for Down Syndrome, Barcelona, Spain
9. Geriatrics Consultant, Lee Center, NY, USA
10. University of Stirling, Stirling, Scotland
11. University of Illinois at Chicago, Chicago, IL, USA

Correspondence Philip McCallion, Center for Excellence in Aging Services, University at Albany, Albany, NY, USA. Email: pmccallion@albany.edu