Aim: To explore the experiences of staff in intellectual disability and specialist palliative care services in supporting persons with intellectual disability and advanced dementia.

Background: Many intellectual disability services are reported to be not prepared to meet and respond to increasing care needs at end-stage dementia. Palliative care specialists may also lack the knowledge and skills necessary to communicate effectively with persons with intellectual disability and often have limited experience in working with persons with dementia.

Method: A total of thirteen focus group interviews were conducted in six ID services and one specialist palliative care provider. The data captured the experiences of the staff who were currently delivering or had delivered care to persons with intellectual disability and advanced dementia across a variety of care type settings. Demographic information was collected on all research participants. Initially, analysis of the focus group data was undertaken manually, followed by the use of a computer-assisted qualitative data analysis software (QAQDAS), NVivo 7. Additional data was collected from the participants who undertook the educational intervention. This data included their daily evaluations of the intervention and the findings from pre and post-training questionnaires.

Results: Two core themes emerged from the focus group data: (1) Building Upon Services’ History and Personal Caring: Offering Quality and Sensitive Care and (2) Supporting Comfort and Optimal Death in Persons with Intellectual Disability and Advanced Dementia. A multi-component 20 session educational intervention was then developed and implemented by a multi-disciplinary team of trainers drawn from intellectual disability and specialist palliative care services. The intervention responded to the training needs identified within the two core themes. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns.

Conclusions: This project benefited from the honest expression of caring concerns by staff. This work offers a picture of their experiences and a respectful intervention to respond to their concerns.