Mapping advance care planning and advance directives in Latin America.

Background/aims: The extent to which low- and middle-income countries have implemented Advance Care Planning (ACP) and Advance Directives (AD) remains unclear. We aimed to map the current status of ACP/AD in Latin America.

Methods: This cross-sectional, mixed-methods survey of ACP/AD in LA comprised interviews with 18 key informants from 18 out of 20 countries, most of whom were appointed by national Palliative Care Associations.

Advance care planning with people living with dementia: ethical considerations of physicians in the United States and the Netherlands.

Objectives: Advance care planning (ACP) is important but complex with people living with dementia. This study aims to explore ethical considerations of physicians around ACP for dementia in two high-income countries (United States and the Netherlands).

Methods: In this qualitative study, semi-structured interviews were conducted with Dutch and American physicians from specialties that provide end-of-life care for people with living dementia.

Identifying instruments for measuring agitation and other non-cognitive symptoms in people with advanced dementia in residential settings: a scoping review protocol.

Introduction: Various instruments exist for assessing agitation and broader non-cognitive symptoms in dementia (NCSD). However, the feasibility and practicality of using these instruments in residential settings with people with advanced dementia have not been evaluated. The aim of our review is to identify the available evidence regarding tools for measuring (1) Agitation and (2) NCSD in people with advanced dementia in residential settings, in terms of use (feasibility and psychometric properties) in this population.

Measuring and monitoring the quality of dying in the UN Decade of Healthy Ageing.

WHO aims to identify metrics to monitor the quality of dying, complementing those indicators proposed under the UN Decade of Healthy Ageing. However, the proposed criteria for a good death are contentious. Needs and priorities vary between individuals and their carers, across conditions, over time, and across communities and cultures.

Namaste Care Family for people with dementia and family-A randomized controlled trial.

Introduction: Few evidence-based psychosocial interventions target people with advanced dementia.

Methods: Namaste Care Family is a daily multi-dimensional care program to improve quality of life (QoL) of people with dementia and their family caregivers. In this cluster-randomized controlled trial, adjusted linear mixed models were used to analyze effects at 1, 3, 6, and 12 months follow-up.

Impact of the DEDICATED approach to optimizing palliative care for people with dementia: a multi-method study.

Background: Palliative care can improve the quality of life of people with dementia. However, nurses and other healthcare professionals often lack the confidence and skills to provide palliative care and struggle to initiate timely conversations about wishes and needs for palliative care. The DEDICATED approach aims to enhance the quality of palliative dementia care by improving knowledge, competencies, and interprofessional collaboration of healthcare professionals.

Referral Criteria for Specialist Palliative Care for Patients With Dementia.

Importance: Patients with dementia have considerable supportive care needs. Specialist palliative care may be beneficial, but it is unclear which patients are most appropriate for referral and when they should be referred.

Objective: To identify a set of consensus referral criteria for specialist palliative care for patients with dementia.

Supporting Family Caregivers of Nursing Home Residents with Dementia in Their Last Week of Life: A Survey Among Bereaved Family Caregivers.

Background: Family caregivers of people with dementia in nursing homes may need support from healthcare providers, especially when death is approaching.

Objective: To increase our understanding of family caregivers' experiences in their relative's last week of life before and during the pandemic, their needs for emotional, practical, and spiritual support, and the extent to which those needs are accommodated by healthcare providers.

Design: Survey among bereaved family caregivers of people with dementia recruited from six nursing homes in the Netherlands in 2018-2019 and 2020-2022.

Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers.

Background: The importance of palliative care and advance care planning in dementia is increasingly recognized. However, little is known about the distinct needs and preferences of people with young-onset dementia.

Aim: To explore how people with young-onset dementia and their family caregivers experience quality of life, and how these experiences shape their views on the future, palliative care needs, and advance care planning.

Music-based therapeutic interventions for people with dementia.

Background: Dementia is a clinical syndrome with a number of different causes. It is characterised by deterioration in cognitive, behavioural, social and emotional functioning. Pharmacological interventions are available but have limited effect on many of the syndrome's features.

Optimizing Advance Care Planning in Dementia: Recommendations From a 33-Country Delphi Study.

Context: Advance care planning (ACP) is relevant yet challenging with cognitive decline.

Objective: To provide evidence and consensus-based clinical recommendations for how to conduct ACP in dementia.

Methods: International Delphi study conducted by the European Association for Palliative Care 'ACP in dementia' taskforce with four online surveys (September 2021-June 2022).

Development and Validation of a Short Version (PAIC6) of the Pain Assessment in Impaired Cognition Scale.

Background: Observer pain scales are commonly used to assess pain in individuals with impaired cognition. However, nursing staff have highlighted that extremely tight time schedules and increasing workload demands prevent regular use. With the development of a short version of the Pain Assessment in Impaired Cognition (PAIC15), we aimed to reduce implementation barriers in everyday clinical practice.

User-friendliness of the pain assessment in impaired cognition (PAIC15) in persons with aphasia: a pilot study.

Background: Persons with aphasia have difficulties communicating pain symptoms.

Methods: Thirteen observers performed multiple observations using the Pain Assessment in Impaired Cognition (PAIC15) scale for persons with aphasia during rest and transfer in persons with aphasia. This pilot study examined the user-friendliness of PAIC15 and preference for type of self-report pain scales with a questionnaire.

Decisions, Decisions, Decisions: An Ethnographic Study of Researcher Discretion in Practice.

This paper is a study of the decisions that researchers take during the execution of a research plan: their researcher discretion. Flexible research methods are generally seen as undesirable, and many methodologists urge to eliminate these so-called 'researcher degrees of freedom' from the research practice. However, what this looks like in practice is unclear.

Acceptability of bispectral Index monitoring in end-of-life care for dementia.

Background: Assessing consciousness might benefit the care for people with Alzheimer's disease and other types of dementia at the end of life by indicating distressing symptoms and moments of awareness. This could guide symptom control and increase interaction with the person with dementia.

Objective: This study aims to investigate the acceptability of a biosignal measurement of consciousness, the Bispectral Index monitoring (BIS), for persons with dementia at the end of life.

"Are you listening?": Experiences shared online by family caregivers of patients in the palliative phase during the Covid-19-pandemic.

Objectives: In palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online.

Understanding mealtime behavioral problems in nursing home residents living with dementia: a group concept mapping approach.

Background: Persons with dementia frequently experience mealtime behavioral problems that can result in reduced or lack of intake of food or fluids. Multiple underlying causes and expressions of mealtime behavioral problems complicate its interpretation and intervention, because problems originating from cognitive and functional decline and behavioral changes may interact. Healthcare professionals and family caregivers may encounter a variety of practical and moral dilemmas in dealing with these problems.

What do family caregivers of patients with life-threatening diseases need from healthcare professionals? A qualitative study.

Objectives: To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient's partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories.

Design: Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed.