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.

The value of virtual simulation in training GP residents in advance care planning conversations.

Introduction: Advance care planning (ACP) aims at empowering patients with chronic progressive disease to express and communicate their preferences for future care, but is not yet consistently applied in general practice. We explored GP residents' experiences with practicing ACP conversations through virtual simulation and its educational value.

Methods: Our study with Dutch GP residents in their first year of training used a hermeneutic phenomenological approach.

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.

Fundamentals of end-of-life communication as part of advance care planning for older people: An interview study with nursing staff.

This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication.

A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families.

This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one's euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again.

Desired dementia care towards end of life: Development and experiences of implementing a new approach to improve person-centred dementia care.

Aims: To describe the co-creation of the 'Desired Dementia Care Towards End of Life' (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation.

Methods: A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings.

Longitudinal associations between subjective cognitive impairment, pain and depressive symptoms in home-dwelling older adults: Modelling within-person effects.

Objectives: Cognitive impairment, pain and depressive symptoms are common and interrelated factors in older adults. However, the directionality and specificity of their association remains unclarified. This study explored whether these factors prospectively increase reciprocal risk and examined the longitudinal association between these factors and quality of life (QoL).

Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board.

The effects of individual music therapy in nursing home residents with dementia to improve general well-being: study protocol of a randomized controlled trial.

Background: Dementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, depression, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia.

Noninvasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: a scoping review.

Background: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort.

Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping.

Commentary: Can an effective end-of-life intervention for advanced dementia be viewed as moral?

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding.

EOLinPLACE: an international research project to reform the way dying places are classified and understood.

Background: Whenever possible, a person should die where they feel it is the right place to be. There is substantial global variation in home death percentages but it is unclear whether these differences reflect preferences, and there are major limitations in how the place of death is classified and compared across countries.

Objectives: EOLinPLACE is an international interdisciplinary research project funded by the European Research Council aiming to create a solid base for a ground-breaking international classification tool that will enable the mapping of preferred and actual places towards death.

Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study.

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.

Palliative Care in Nursing Home Residents with Young-Onset Dementia: Professional and Family Caregiver Perspectives.

Background: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD).

Objective: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes.

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review.

Objectives: This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.

Design: Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline.

Data Sources: PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023.

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

Introduction: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention.

Methods: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board.

Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review.

Background: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.