BackgroundWhen entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.MethodsIn 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development.Results(1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient.ConclusionA mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.

The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

Our findings are consistent with others in indicating problems with transition to palliative care for U.S. nursing home residents with dementia.

PURPOSEWe wanted to explore factors that infl uence Dutch and US physician treatment decisions when nursing home patients with dementia become acutely ill with pneumonia.METHODS Using a qualitative semistructured interview study design, we collected data from 12 physicians in the Netherlands and 12 physicians in North Carolina who care for nursing home patients. Our main outcome measures were perceptions of infl uential factors that determine physician treatment decisions regarding care of demented patients who develop pneumonia. RESULTSSeveral themes emerged from the study. First, physicians viewed their patient care roles differently. Dutch physicians assumed active, primary responsibility for treatment decisions, whereas US physicians were more passive and deferential to family preferences, even in cases when they considered families' wishes for care as inappropriate. These family wishes were a second theme. US physicians reported a perceived sense of threat from families as infl uencing the decision to treat more aggressively, whereas Dutch physicians revealed a predisposition to treat based on what they perceived was in the best interest of the patient. The third theme was the process of decision making whereby Dutch physicians based decisions on an intimate knowledge of the patient, and American physicians reported limited knowledge of their nursing home patients as a result of lack of contact time.CONCLUSION Physician-perceived care roles regarding treatment decisions are infl uenced by contextual differences in physician training and health care delivery in the United States and the Netherlands. These results are relevant to the debate about optimal care for patients with poor quality of life who lack decision-making capacity.

Cognitively impaired residents comprise a heterogeneous group with a wide variety of function. Restriction with respect to ADL dependency allows for distinction between moderate and severe dementia. We propose the following MDS-based definition of severe dementia: a CPS score of 5 or 6 with a minimum score of at least 10 points on the MDS ADL-Short Form.

Objective(s): To examine the perspectives of staff, and family caregivers (i.e., family, friends, and volunteers) on the impact of the Namaste Care Family program on all involved. The Namaste Care Family program is a structured program for people with advanced dementia based on a palliative care approach in which family caregivers provide daily sessions together with staff with the aim to increase residents’ quality of life. Methods: In this descriptive qualitative study, we interviewed 12 family caregivers, and 31 staff members from 10 nursing homes. Data was analyzed thematically. Results: A perceived impact of the program was identified for the residents, staff, and family caregivers. For residents, this included well-being, more engagement, enhanced interactions, changes in energy level, and weight gain. The impact on family caregivers included a more positive view of people with dementia, changes in family visits, mixed feelings during sessions, and mixed changes in relations with all involved. For staff, this included diverse work experiences, shift to more person-centered care (more time and attention for residents, and more awareness), and developing relationships with residents and colleagues. Conclusions: The Namaste Care Family program was valued for its observed benefits and shift towards a person-centered care culture.

Increasing life span and lack of medication for prevention or treatment of progressive dementias will significantly increase the number of individuals with advanced dementia worldwide. Providing optimal care for them will stretch health care resources and will require evaluation of different treatment strategies. This paper is presenting measures that may be used in this patient population. Evaluation of global goals of palliative care may include measuring quality of life by QUALID scale, comfort by DS-DAT scale, and engagement by MPES scale. Symptom control may be achieved by measuring pain by PAINAD or PACSLAC scales, by evaluating behavioral symptoms and their management (agitation by SOAPD scale, apathy by AES scale and rejection of care by RTC-DAT scale), and by monitoring patients for dyspnea using RDOS scale. Outcomes of palliative care at the end of life may be evaluated by EOLD-CAD scale and by determining family satisfaction with care (EOLD-SWC). Items included in these scales, psychometric properties, and research use of these scales are described. It is hoped that information in this paper will stimulate research interest in this important area.

Background Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. Trial registration The Graduate School and Faculty of Medicine Kyoto University (R1924–1).