Supporting persons with Down syndrome and advanced dementia

Abstract

Aim: To understand staff perceptions of critical issues in caring for persons with intellectual disability (ID) and advanced dementia. Background: There has been growing interest in addressing resource, training, and service redesign issues including an increase in collaborative practices in response to the growing incidence of dementia among persons with ID. Most recently this has included consideration of the specific issues in advanced dementia. Method: Thirteen focus group interviews were held involving staff in six ID services and one specialist palliative care provider in Ireland. A qualitative descriptive approach was taken to analysis. Results: Staff identified three key themes: (1) readiness to respond to end of life needs, (2) the fear of swallowing difficulties, and (3) environmental concerns and ageing in place. Discussion: Four underlying issues that emerged in this study offer clues to solutions: (a) differences in staff preparation associated with settings, (b) lack of understanding and lack of collaboration with palliative care services, (c) uncertainties about the ability to transfer existing palliative care models to persons with ID and dementia and (d) the need to develop training on end stage dementia and related care approaches.