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.

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.

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.

Aim To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care to other populations and disease conditions and to better understand the timing and role of palliative care delivery. Methods Thirteen focus group interviews were held involving staff in six intellectual disability services and one specialist palliative care provider in Ireland. A qualitative descriptive approach was taken to analysis. Results Specialist palliative care staff recognized that person-centred care delivered in intellectual disability services was consistent with palliative approaches, but staff in intellectual disability services did not consider advanced dementia care as 'palliative care'. Both groups were unsure about the role of palliative care at early stage of dementia but appreciated specialist palliative care contributions in addressing pain and symptom management challenges. Conclusions Successful extension of palliative care principles, philosophy and services to persons with intellectual disabilities and AD will require in-depth understanding of prevailing care philosophies and agreement regarding timing and the unique contributions of specialist palliative care services.

This study performed a systems analysis of the process by which patients under the care of a specialist palliative home care obtained medications, and highlighted factors that delay this process. Systems analysis is the science dealing with analysis of complex, large-scale systems and the interactions within those systems. This study used a mixed-methods approach of questionnaires of general practitioners, pharmacists and patients, and a prospective observational study of delays experienced by patients referred to the home care team over a three-month period. This study found the main factors causing delay to be: medications not being in stock in pharmacies, medications not being available on state reimbursed schemes and inability of patients and carers to courier medications.