Hélène Ouellette-Kuntz1, Lynn Martin2, Eilish Burke3, Philip McCallion3,4, Mary McCarron5, Eimear McGlinchey3, Magnus Sandberg6, Josje Schoufour7, Shahin Shooshtari8, Bev Temple9. 1. Department of Public Health Sciences, Queen's University, Kingston, ON, Canada. 2. Department of Health Sciences, Lakehead University, Thunder Bay, ON, Canada. 3. School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland. 4. School of Social Work, Temple University, Philadelphia, Pennsylvania. 5. Faculty of Health Sciences, Trinity College Dublin, Dublin, Ireland. 6. Department of Health Sciences, Lund University, Lund, Sweden. 7. Department of Epidemiology, Erasmus MC, University Medical Centre, Rotterdam, The Netherlands. 8. Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, Canada. 9. Department of Nursing, University of Manitoba, Winnipeg, MB, Canada.
Abstract
BACKGROUND: While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. METHOD: An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. RESULTS: There is agreement that person-centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. CONCLUSION: The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised.
BACKGROUND: While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. METHOD: An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. RESULTS: There is agreement that person-centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. CONCLUSION: The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised.