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Background and Objectives The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. Research Design and Methods A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. Results Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. Discussion and Implications There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time. [ABSTRACT FROM AUTHOR]

Acceptance and commitment therapy (ACT) is a relatively new type of psychotherapy effective for treating depression and anxiety amongst family care partners of persons living with dementia [PLWD]. However, care partner engagement in mental health services is low and specific guidelines for designing ACT programs for care partners of PLWD do not exist. The purpose of this scoping review was to examine patterns in care partner engagement in ACT programs to identify program factors potentially influencing engagement. A comprehensive scoping review according to Arksey and O'Malley's framework was followed. Databases and grey literature were searched for primary studies of ACT programs with care partners of PLWD. Data were charted and synthesized. Ten studies met inclusion criteria and were analyzed. Amongst these, engagement was highest in three ACT programs that were delivered individually, remotely and were therapist-led or supported. Conversely, engagement was the lowest in two ACT programs that were self-directed, web-based and had minimal or no care partner-therapist interaction. Program factors perceived as influencing engagement included tailoring and personalization, mode of delivery and format, therapeutic support and connectedness, program duration and pace. Findings from this review suggest that care partners engagement may be promoted by designing ACT programs that focus on the therapeutic client-therapist relationship, are delivered remotely and individually. Future research should focus on evaluation of best implementation practices for engagement and effectiveness. [ABSTRACT FROM AUTHOR]

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice. Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research. [ABSTRACT FROM AUTHOR]

Reflecting on sustained calls for patient-centredness and culture change in long-term care, we evaluated the relative importance of personal and organisational predictors of palliative care, hypothesising the former as weaker predictors than the latter. Health-care employees (N = 184) from four Canadian long-term care homes completed a survey of person-centred care, self-efficacy, employee wellbeing and occupational characteristics. Using backward stepwise regression models, we examined the relative contributions of these variables to person-centred palliative care. Specifically, blocks of variables representing personal, organisational and occupational characteristics; palliative care self-efficacy; and employee wellbeing were simultaneously regressed on variables representing aspects of person-centred care. The change in R 2 associated with the removal of each block was examined to determine each block's overall contribution to the model. We found that occupational characteristics (involvement in care planning), employee wellbeing (compassion satisfaction) and self-efficacy were reliably associated with person-centred palliative care (p < 0.05). Facility size was not associated, and facility profit status was less consistently associated. Demographic characteristics (gender, work experience, education level) and some aspects of employee wellbeing (burnout, secondary trauma) were also not reliably associated. Overall, these results raise the possibility that humanistic care is less related to intrinsic characteristics of employees, and more related to workplace factors, or to personal qualities that can be cultivated in the workplace, including meaningful role engagement, compassion and self-efficacy. [ABSTRACT FROM AUTHOR]

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. Research Design and Objective: 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. Findings: 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. Discussion and Implications: 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. Patient or Public Contribution: 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. [ABSTRACT FROM AUTHOR]

Background and Objectives Strategies to manage the coronavirus disease 2019 (COVID-19) pandemic included widespread use of physical distancing measures. These well-intended strategies adversely affected long-term care (LTC) residents' socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and their caregivers. This study aimed to understand how these measures affected informal caregivers of people living in LTC homes in Ontario. Strategies to increase socialization and promote social connection during and post-COVID-19 were also explored. Research Design and Methods This qualitative study used descriptive and photovoice approaches. Of the 9 potential caregivers identified, 6 participated in the study and shared their experiences and photographic reflections in virtual focus group sessions. Results Findings highlighted the increased social isolation experienced by people living in LTC and their caregivers during COVID-19. Caregivers reported pronounced declines in residents' well-being and were frustrated by challenges connecting with their family members during quarantine. Attempts made by LTC homes to maintain social connections, such as window visits and video calls, did not fulfill the social needs of residents and their caregivers. Discussion and Implications Findings underscore a need for better social support and resources for both LTC residents and their caregivers going forward to prevent further isolation and disengagement. Even in times of lockdown, LTC homes must implement policies, services, and programs that promote meaningful engagement for older adults and their families. [ABSTRACT FROM AUTHOR]