Developing an Education Intervention for Staff Supporting Persons With an Intellectual Disability and Advanced Dementia

Generally, staff working in settings that provide care for adults with intellectual disabilities (ID) have not received specific education with respect to extended care for terminal illnesses or late-stage dementia. Equally, staff working in specialist palliative care often are not familiar with the unique issues of supporting persons with intellectual disabilities affected by dementia. To understand care concerns with respect to supporting persons with ID and advanced dementia, and to develop, deliver, and evaluate an educational intervention with staff in ID settings and specialist palliative care services, 14 focus group interviews were conducted with staff across six ID services and one specialist palliative care provider in the greater Dublin (Ireland) area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "aging in place," and the preparation for a "good death" including support for staff, peers, and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in persons with ID.