Staff Perceptions of Essential Prerequisites Underpinning End-of-Life Care for Persons With Intellectual Disability and Advanced Dementia

Authors: Mary McCarron, Philip McCallion , Elizabeth Fahey-McCarthy, and Kevin Connaire

Organisations: School of Nursing and Midwifery Studies, Trinity College Dublin, Dublin, Ireland; University at Albany, Albany, NY, USA; and St. Francis Hospice, Raheny, Ireland

Published: Journal of Policy and Practice in Intellectual Disabilities - Volume 7 Issue 2, Pages 143 - 152

Keywords: dementia • intellectual disability • palliative care • staff training

(01 Dec 2009)

To better address palliative care and end-of-life issues for persons with intellectual disability (ID) and dementia, work was undertaken to understand the perspectives of agency staff in both the ID services and specialist palliative care fields. A qualitative descriptive design composed of 13 focus group interviews involved 50 participants drawn from six ID service providers and seven participants from one specialist palliative care service. Analysis was an iterative process; codes were identified and through thematic analysis, collapsed into two core themes: building upon services' history and personal caring––offering quality and sensitive care, and supporting comfort and optimal death in persons with ID and advanced dementia. Challenges were raised for service systems in the areas of aging in place, person-centered care, and interservice collaboration. Authors recommend both more practice relationship-based and collaborative approaches to care and a stronger evidence-based research program on the timing and the efficacy of palliative care for persons with ID and dementia.

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