BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.
UNASSIGNED: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.
RESULTS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers\' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.
CONCLUSIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.
UNASSIGNED: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

There are 24 regional pediatric palliative care resource teams (ERSP) in metropolitan and overseas France. An initial review of the ERSPs was carried out in 2015. The ERSP commission of the Société française de soins palliatifs pédiatriques (French Society for Pediatric Palliative Care) wanted to review the situation again, ten years after the creation of these teams. This article presents the main findings.

Person-centredness is a cornerstone to a palliative approach to care. However, there is a risk that a person-centred perspective is lost in how a palliative approach is evaluated. We explored the extent to which evaluations of a palliative approach are consistent with its person-centred ethical stance. Using a narrative review approach, we critically reflected on how the experiences, priorities and concerns of patients and family are represented, or not represented, in evaluations of a palliative approach. We were guided by the following questions: (1) What types of outcomes and indicators are commonly used to evaluate a palliative approach? (2) Whose perspectives are represented in current evaluations of a palliative approach? And (3) What are the foci of evaluation in this body of research? We observed that the evaluations of a palliative approach are commonly based on indicators of its implementation and predominantly reflect the perspectives of healthcare providers and healthcare systems, rather than patients or family. Although evaluations focused on healthcare providers and systems are important for integrating a palliative approach, there is concern that the essence of person-centredness is lost when the perspectives of patients and families about their healthcare needs, outcomes and experiences are not consistently measured as the ultimate goal of care. There is a need for more emphasis on evaluation practices that value person-centred outcomes, in addition to outcomes oriented to the needs of healthcare providers and systems.

End-of-life support and the implementation of a palliative approach require specific skills deployed in multidisciplinary teams. The same is true for professionals in the disability sector who accompany the life projects of people living in specialized facilities. This article proposes, based on a clinical situation at the end of life, a reflection on the acculturation of practices between the health, social and medico-social fields in favor of better end-of-life support for people with disabilities.

BACKGROUND: Residents living in long-term care homes (LTCH) have complex care needs, multiple chronic conditions, increasing frailty and cognitive impairment. A palliative approach that incorporates advance care planning (ACP) should be integrated with chronic disease management, yet it is not a norm in most LTCHs. Despite its growing need, there remains a lack of staff engagement in the ACP process.
OBJECTIVE: The aim of this study was to explore the perceptions and experiences of interdisciplinary staff related to the practice of ACP in LTCHs.
METHODS: This study is part of a larger Canadian project, iCAN ACP, that aims to increase uptake, and access to ACP for older Canadians living with frailty. An exploratory qualitative design using an interpretive descriptive approach was employed utilizing focus groups and semi-structured interviews with staff from four LTCHs in Ontario, Canada.
RESULTS: There were 98 participants, including nurses (n = 36), physicians (n = 4), personal support workers (n = 34), support staff (n = 23), and a public guardian (n = 1). Three common themes and nine subthemes were derived: a) ongoing nature of ACP; b) complexities around ACP conversations; and c) aspirations for ACP becoming a standard of care in LTCHs.
CONCLUSIONS: The findings of this study provide important contributions to our understanding of the complexities surrounding ACP implementation as a standard of practice in LTCHs. One of the critical findings relates to a lack of ACP conversations prior to admission in the LTCHs, by which time many residents may have already lost cognitive abilities to engage in these discussions. The hierarchical nature of LTCH staffing also serves as a barrier to the interdisciplinary collaboration required for a successful implementation of ACP initiatives. Participants within our study expressed support for ACP communication and the need for open lines of formal and informal interdisciplinary communication. There is a need for revitalizing care in LTCHs through interdisciplinary care practices, clarification of role descriptions, optimized staffing, capacity building of each category of staff and commitment from the LTCH leadership for such care.
CONCLUSIONS: The findings build on a growing body of research illustrating the need to improve staff engagement in ACP communication in LTCHs.

Interprofessional collaboration is needed in palliative care and many other areas in health care. Pallium Canada\'s two-day interprofessional Learning Essential Approaches to Palliative care Core courses aim to equip primary care providers from different professions with core palliative care skills.
Explore the learning experience of learners from different professions who participated in Learning Essential Approaches to Palliative care Core courses from April 2015 to March 2017.
This mixed methods study was designed as a secondary analysis of existing data. Learners had completed a standardized course evaluation survey online immediately post-course. The survey explored the learning experience across several domains and consisted of seven closed ended (Likert Scales; 1 = \"Total Disagree\", 5 = \"Totally Agree\") and three open-ended questions. Quantitative data were analyzed using descriptive statistics and Kruskal-Wallis non-parametric test tests, and qualitative data underwent thematic analysis.
During the study period, 244 courses were delivered; 3045 of 4636 participants responded (response rate 66%); physicians (662), nurses (1973), pharmacists (74), social workers (80), and other professions (256). Overall, a large majority of learners (96%) selected \"Totally Agree\" or \"Agree\" for the statement \"the course was relevant to my practice\". A significant difference was noted across profession groups; X2 (4) = 138; p < 0.001. Post-hoc analysis found the differences to exist between physicians and pharmacists (X2 = -4.75; p < 0.001), and physicians and social workers (X2 = -6.63; p < 0.001). No significant differences were found between physicians and nurses (X2 = 1.31; p = 1.00), and pharmacists and social workers (X2 = -1.25; p = 1.00). Similar results were noted for five of the other statements.
Learners from across profession groups reported this interprofessional course highly across several learning experience parameters, including relevancy for their respective professions. Ongoing curriculum design is needed to fully accommodate the specific learning needs of some of the professions.

UNASSIGNED: Advance care planning can improve the quality of life for residents in long-term care homes and reduce stress for families. However, care home staff and families often lack knowledge about advance care planning, making it especially difficult for residents with dementia to communicate their care plan wishes. A Conversation Starter Kit may increase advance care planning awareness among staff and families.
UNASSIGNED: This study evaluated an advance care planning intervention, the Conversation Starter Kit booklet, for use in long term care homes.
UNASSIGNED: Data were collected at three long-term care homes in southern Ontario. We collected data from 55 residents who were able to make decisions on their own paired with 11 family members of these residents. We also collected data from 24 family members of residents who were unable to make decisions on their own. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a three-month advance care planning intervention. An additional structured interview was completed at the end of the intervention period, which included both closed and open-ended questions to assess perceptions about the booklet\'s use or non-use.
UNASSIGNED: Residents reported more engagement in advance care planning after completing the Conversation Starter Kit booklet, particularly related to asking questions to health care providers about health care decisions. Family members reported feeling very certain that they would be able to make decisions on behalf of the resident but felt less certain after completing the booklet, implying the booklet raised their awareness of the types of decisions they might need to make, hopefully prompting them to be more prepared for decisions in the future.
UNASSIGNED: An advance care planning intervention - The Conversation Starter Kit booklet - appears acceptable and easy to use for residents and family members/friends in long-term care and can improve resident engagement in advance care planning. Although using the booklet may decrease efficacy for decision making among family members of long-term care residents, it may highlight the importance of more actionable engagement in advance care planning among residents, their families/friends, and staff.

A palliative approach to care aims to meet the needs of patients and caregivers throughout a chronic disease trajectory and can be delivered by non-palliative specialists. There is an important gap in understanding the perspectives and experiences of primary care providers on an integrated palliative approach in dementia care and the impact of existing programs and models to this end. To address these, we undertook a scoping review. We searched five databases; and used descriptive numerical summary and narrative synthesizing approaches for data analysis. We found that: (1) difficulty with prognostication and a lack of interdisciplinary and intersectoral collaboration are obstacles to using a palliative approach in primary care; and (2) a palliative approach results in statistically and clinically significant impacts on community-dwelling individuals, specifically those with later stages of dementia. There is a need for high-quality research studies examining the integrated palliative approach models and initiation of these models sooner in the care trajectory for persons living with mild and moderate stages of dementia in the community.

COVID-19 pandemic has resulted in a significant increase in deaths in long-term care homes (LTCH). People with dementia living in LTCHs represent one of the most frail and marginalized populations in Canada. The surge of COVID-19 cases in LTCHs and rationing of health-care resources during the pandemic have amplified the pre-existing need for improvements in palliative and end-of-life care in LTCHs. This position statement, created by a task force commissioned by the Alzheimer Society of Canada, provides recommendations for a multipronged coordinated approach to improving palliative and end-of-life care of people with dementia living in LTCHs during the COVID-19 pandemic and beyond.

Accompanying a person at the end of life at home requires skills to alleviate symptoms and the availability to take care of the person and his or her loved ones. Interdisciplinary teamwork helps to give meaning to the care project and to cross the views on complex issues.