A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.

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.

Burnout Among Nursing Home Care Aides and the Effects on Resident Outcomes.

While burnout among health care workers has been well studied, little is known about the extent to which burnout among health care workers impacts the outcomes of their care recipients. To test this, we used a multi-year (2014-2020) survey of care aides working in approximately 90 nursing homes (NHs); the survey focused on work-life measures, including the Maslach Burnout Inventory (MBI) and work-unit identifier. Resident Assessment Instrument Minimum Data Set (RAI-MDS 2.0) data were obtained on all residents in the sampled NHs during this time and included a unit identifier for each resident. We used multi-level models to test associations between the MBI emotional exhaustion and cynicism sub-scales reported by care aides and the resident outcomes of antipsychotics without indication, depressive symptoms, and responsive behaviors among residents on units. In 2019/2020, our sample included 3,547 care aides and 10,117 residents in 282 units. The mean frequency of emotional exhaustion and cynicism across units was 43% and 50%, respectively. While residents frequently experienced antipsychotics without indication 1,852 (18.3%), depressive symptoms 2,089 (20.7%), and responsive behaviors 3,891 (38.5%), none were found to be associated with either emotional exhaustion or cynicism among care aides.

[The tradeoff between an open or closed unit for residents with dementia: a qualitative study]. / De afweging tussen een open of gesloten afdeling voor bewoners met dementie: een kwalitatieve studie.

BACKGROUND: There is growing attention for freedom of movement as part of person-centred dementia care. Although a closed door can reduce safety risks, it also reduces quality of life. Care organization tanteLouise strives for maximum responsible freedom for residents with dementia. Nevertheless, residents are sometimes transferred from an open to a closed psychogeriatrics (PG) department. AIM: To explore healthcare professionals' considerations in transferring residents from an open to a closed psychogeriatrics [PG] ward within tanteLouise. METHOD: Semi-structured in-depth interviews with carers and nurses from open and closed PG and a multidisciplinary focus group. The data has been analyzed thematically. FINDINGS: According to the participants, both open and closed PG can provide a suitable living environment, depending on individual residents. Open PG facilitates freedom and self-direction, and closed PG offers security, structure and expert guidance. Before a transfer, the multidisciplinary team discusses possibilities and risks on open PG. Despite this, residents regularly move to closed PG without a valid reason. Participants strive for more freedom for residents with dementia, for which they believe preconditions are still lacking. CONCLUSION: The provided structure and expert guidance on closed PG must also be present on open PG to maintain freedom for residents with dementia. In addition, a culture change and preconditions from the organization are necessary.

I want to be seen as myself: needs and perspectives of persons with dementia concerning collaboration and a possible future move to the nursing home in palliative dementia care.

Introduction: Interprofessional collaboration (IPC) within and during movements between care settings is crucial for optimal palliative dementia care. The objective of this study was to explore the experiences of persons with dementia regarding collaboration with and between healthcare professionals (HCPs) and their perceptions of a possible future move to the nursing home (NH) in palliative dementia care. Method: We conducted a cross-sectional qualitative study and performed semi-structured interviews with a purposive sample of persons with dementia living at home (N = 18). Data analysis involved content analysis. Results: Our study demonstrated that even though most persons with dementia find it difficult to perceive the collaboration amongst HCPs, they could describe their perceived continuity of care (Theme 1. My perception of collaboration among HCPs). Their core needs in collaboration with HCPs were receiving information, support from informal caregivers, personal attention and tailored care (Theme 2. My needs in IPC). Regarding a possible future move to the NH, persons with dementia cope with their current decline, future decline and a possible future move to the NH (Theme 3. My coping strategies for a possible future move to the NH). They also prefer to choose the NH, and continue social life and activities in their future NH (Theme 4. My preferences when a NH becomes my possible future home). Conclusion: Persons with dementia are collaborative partners who could express their needs and preferences, if they are willing and able to communicate, in the collaboration with HCPs and a possible future move to the NH.

Nurses' support needs in providing high-quality palliative care to persons with dementia in the hospital setting: A cross-sectional survey study.

BACKGROUND: Since dementia is an irreversible progressive disease characterized by a decline in mental functions and overall health, a palliative care approach is recommended. Nevertheless, many persons with dementia experience burdensome hospitalizations in end-of-life care. Their quality of life during hospitalization can be improved by palliative nursing care that suits their fragile health. AIM: To explore hospital nurses' perceived support needs while providing high-quality palliative care for persons with dementia and to identify differences between nurses in different ward types and at different educational levels. DESIGN: Cross-sectional, multicenter survey study. METHOD: Between January 2021 and April 2021, a convenience sample of Dutch hospital nurses received a web-based questionnaire on the topics of palliative caregiving, communication, collaboration, and hospital admissions. The data were analyzed using descriptive statistics. RESULTS: The survey was completed by 235 nurses. The most frequently endorsed support needs were "communicating with persons with severe dementia" (58.3%), "appointing a permanent contact person in the care for persons with dementia" (53.6%), and "dealing with family disagreement in end-of-life care" (53.2%). If nurses had more time to provide care, 66.4% of them would prioritize providing personal attention. Most support needs identified by nurses were similar. CONCLUSION: A heterogeneous group of nurses demonstrates overall similar support needs in providing palliative care for persons with dementia and their families in the hospital setting. CLINICAL RELEVANCE: Nursing practices should implement dementia-friendly interventions to improve the quality of dementia care in the hospital.

Benefits of Structured Advance Care Plan in end-of-Life Care Planning among Older Oncology Patients: A Retrospective Pilot Study.

Objectives: Studies suggest that advance care planning (ACP) results in improved quality of life and reduced healthcare consumption. We assessed how the use of a structured advance care planning tool (ACPT) in oncology patients relates to their healthcare consumption before death, and to the match between preferred and actual place of death. Methods: We performed a pilot study at a teaching hospital in the Netherlands. Endpoints were 1) healthcare consumption at three and one month(s) before death, and 2) the match between preferred and actual place of death. Results: The study included 75 patients without an ACPT (group 1) and 59 patients with an ACPT (group 2) of whom the preferred place of care or death were documented at least three months before death in 15 patients (subgroup 2b). Compared to group 1, patients in group 2 had significantly more healthcare consumption. However, compared to group 1, patients in subgroup 2b underwent significantly less diagnostic (33.3% (n = 5) versus 69.3% (n = 52), p < 0.05) and laboratory tests (33.3% (n = 5) versus 62.7% (n = 47), p < 0.05) one month before death. Patients in subgroup 2b died at their preferred place more often (76.9%, n = 10) compared to patients in group 1 (58.3%, n = 7) (NS), which meant more deaths at home and less in-hospital-deaths. Conclusions: The results suggest that timely documentation of the preferred place of care or death in a structured ACPT may result in less healthcare consumption and a better match between the preferred and actual place of death.

End-of-life care for people with dementia on a green care farm during the COVID-19 pandemic: a qualitative study.

OBJECTIVE: Green care farms combine agriculture production with health-related, social and educational services. In the Netherlands, they form an alternative to traditional nursing homes for people with dementia. Green care farms that offer 24-hour care, also offers end-of-life care. To date, little is known about end-of-life care for people with dementia on green care farms. This study aimed to explore the experiences of healthcare workers and family caregivers with end-of-life care for people with dementia who died on a green care farm. DESIGN: An explorative, descriptive qualitative design with a phenomenological approach. SETTING AND PARTICIPANTS: A purposive sample of 15 participants - seven healthcare workers and eight family caregivers - from three green care farms in the Netherlands. METHODS: Semi-structured, in-depth interviews were conducted to explore participants' experiences with end-of-life care, including topics such as advance care planning, the influence of COVID-19, and bereavement support. Transcripts were thematically analysed using Braun and Clarke's approach. RESULTS: Four main themes were extracted: 1) tailored care and attention for the individual resident, 2) reciprocal care relationships between healthcare workers and family caregivers, 3) compassionate care and support in the dying phase, and 4) the influence of COVID-19 on end-of-life care. CONCLUSION AND IMPLICATIONS: The overall experience of the healthcare workers and family caregivers was that end-of-life care offered on green care farms is person-centred and compassionate and is tailored to the person with dementia and their family caregivers. Despite the COVID-19 pandemic, healthcare workers and family caregivers were satisfied with end-of-life care on the green care farms. Green care farms may offer a valuable alternative care setting for people with dementia in their last phase of life. More research is needed to investigate green care farms'benefits compared to other, more traditional settings.

[Using the Treatment Passport to stimulate Advance Care Planning]. / Het gebruik van het Behandelpaspoort voor het stimuleren van Proactieve Zorgplanning.

Care recipients are becoming increasingly involved in the decision-making process for suitable treatments. Advance Care Planning (ACP) enables care recipients and healthcare professionals to timely think and discuss wishes and preferences for treatments, before a care recipient becomes limited by disease, cognitive problems or age. The Treatment Passport is developed by geriatric specialist Esther Bertholet and contains supportive questions to think about treatment wishes. This study aimed to evaluate the experiences of civilians and healthcare professionals with the usage of the Treatment Passport during ACP. Involved care organisations distributed the Treatment Passports to healthcare professionals, for example dementia casemanagers. Healthcare professionals then handed the Treatment passports to civilians, for example older persons. Thereafter, healthcare professionals (N=30) and civilians (N=80) filled out a questionnaire about the experiences with usage of the Treatment Passport. 65% of the civilians had a disease and a mean age 75.3 years. The Treatment Passport was considered a helpful tool to think and talk about treatment wishes. 57% of the healthcare professionals wants to keep using the Treatment Passport and 78% of the civilians would recommend it to others. Participants who found the passport of limited added value mostly had their own methods of discussing their treatment wishes.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

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).

Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers.

A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: (1) Informal caregivers' roles in interprofessional collaboration with healthcare professionals and (2) Informal caregivers' perception of interprofessional collaboration among healthcare professionals. Informal caregivers' roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers' collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.

Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers.

BACKGROUND: Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. METHODS: We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. RESULTS: End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. DISCUSSION: Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study.

AIMS AND OBJECTIVES: To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations. BACKGROUND: Awareness about perspectives of people with dementia should decrease stigmatisation and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning. DESIGN: Qualitative descriptive design. METHODS: We performed in-depth interviews with 18 community-dwelling persons with dementia in South-Limburg, the Netherlands. Transcripts were analysed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines. RESULTS: Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings. CONCLUSIONS: Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life. RELEVANCE TO CLINICAL PRACTICE: This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families.

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

[The nurse's role in the process of advance care planning]. / De rol van de verzorgende en verpleegkundige in het advance care planning proces.

The COVID-19 pandemic and its impact on older and frail people underlines the importance of advance care planning (ACP). ACP is a dynamic communication process involving patients, families and healthcare providers, which serves to discuss and document wishes and goals for future care. Currently, ACP practice is often suboptimal. This implies that important decisions about care and treatment may need to be made acutely in crises. Many factors contribute to suboptimal ACP practice. One such factor is ambiguity regarding roles and responsibilities of different disciplines in the ACP-process. The perception that having ACP conversations is primarily a physician's task is a misconception. Specific skills that could contribute to a holistic and person-centered ACP-process are largely lacking in nursing curricula and therefore, may be insufficient and under-utilized. For instance, nursing staff could involve persons in conversations about meaning, quality of life, loss and grief as a part of ACP. Moreover, they may communicate a patient's wishes to other healthcare providers including physicians. Acknowledgement of this potential role, by physicians as well as by nursing staff themselves, is needed for ACP to become a truly interprofessional process.

Practical nursing recommendations for palliative care for people with dementia living in long-term care facilities during the COVID-19 pandemic: A rapid scoping review.

BACKGROUND: The acute nature of COVID-19 and its effects on society in terms of social distancing and quarantine regulations affect the provision of palliative care for people with dementia who live in long-term care facilities. The current COVID-19 pandemic poses a challenge to nursing staff, who are in a key position to provide high-quality palliative care for people with dementia and their families. OBJECTIVE: To formulate practice recommendations for nursing staff with regard to providing palliative dementia care in times of COVID-19. DESIGN AND METHOD: A rapid scoping review following guidelines from the Joanna Briggs Institute. Eligible papers focused on COVID-19 in combination with palliative care for older people or people with dementia and informed practical nursing recommendations for long-term care facilities. After data extraction, we formulated recommendations covering essential domains in palliative care adapted from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care. DATA SOURCES: We searched the bibliographic databases of PubMed, CINAHL and PsycINFO for academic publications. We searched for grey literature using the search engine Google. Moreover, we included relevant letters and editorials, guidelines, web articles and policy papers published by knowledge and professional institutes or associations in dementia and palliative care. RESULTS: In total, 23 documents (7 (special) articles in peer-reviewed journals, 6 guides, 4 letters to editors, 2 web articles (blogs), 2 reports, a correspondence paper and a position paper) were included. The highest number of papers informed recommendations under the domains 'advance care planning' and 'psychological aspects of care'. The lowest number of papers informed the domains 'ethical care', 'care of the dying', 'spiritual care' and 'bereavement care'. We found no papers that informed the 'cultural aspects of care' domain. CONCLUSION: Literature that focuses specifically on palliative care for people with dementia in long-term care facilities during the COVID-19 pandemic is still largely lacking. Particular challenges that need addressing involve care of the dying and the bereaved, and ethical, cultural and spiritual aspects of care. Moreover, we must acknowledge grief and moral distress among nursing staff. Nursing leadership is needed to safeguard the quality of care and nursing staff should work together within an interprofessional care team to initiate advance care planning conversations in a timely manner, to review and document advance care plans, and to adapt goals of care as they may change due to the COVID-19 situation. Tweetable abstract: The current COVID-19 pandemic affects people living with dementia, their families and their professional caregivers. This rapid scoping review searched for academic and grey literature to formulate practical recommendations for nursing staff working in long-term care facilities on how to provide palliative care for people with dementia in times of COVID-19. There is a particular need for grief and bereavement support and we must acknowledge grief and moral distress among nursing staff. This review exposes practice and knowledge gaps in the response to COVID-19 that reflect the longstanding neglect and weaknesses of palliative care in the long-term care sector. Nursing leadership is needed to safeguard the quality of palliative care, interprofessional collaboration and peer support among nursing staff.

Nursing Staff Needs in Providing Palliative Care for Persons With Dementia at Home or in Nursing Homes: A Survey.

PURPOSE: This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes. DESIGN: A cross-sectional, descriptive survey design was used. METHODS: A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis. FINDINGS: The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority. CONCLUSIONS: Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones. CLINICAL RELEVANCE: It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home.

Nursing staff needs in providing palliative care for people with dementia at home or in long-term care facilities: A scoping review.

BACKGROUND: Nursing staff caring for people with dementia have a crucial role in addressing palliative care needs and identifying changes in health status. Palliative care for people with dementia is complex and requires specific competences. A lack thereof may lead to unnecessary hospitalizations, poor symptom control and undesirable burdensome treatments. Understanding what nursing staff need to provide palliative care specifically for people with dementia facilitates the development of tailored and feasible interventions. OBJECTIVE: To investigate what is known from the literature regarding the needs in providing palliative dementia care as perceived by nursing staff working in home care or in long-term care facilities and to establish an integrated conceptualization of these needs. DESIGN: A scoping review method combined with thematic analysis methods. DATA SOURCES: Bibliographic databases of PubMed, CINAHL and PsycINFO were searched for primary research studies. REVIEW METHODS: Guidelines from the Joanna Briggs Institute were utilized as a framework for setting up and conducting the scoping review. Eligible articles considered nursing staff's perceived needs in providing palliative dementia care at home or in long-term care facilities. Two authors assessed eligibility based on title and abstract, assessed full texts for selected records and assessed the quality of included articles. Thematic analysis methods were used to identify themes from relevant study findings, which were integrated to form a conceptualization. RESULTS: Of the 15 articles that were included, most used qualitative methods (N = 13) and were conducted in long-term care facilities (N = 14). Themes reflecting nursing staff needs on a direct care-level concern recognizing and addressing palliative care needs (such as comfort), verbal and non-verbal communication, challenging behaviour and familiarity: knowing and understanding the person with dementia. On more distant levels, themes involve a need for interdisciplinary collaboration, training and education and organizational support. CONCLUSION: A comprehensive overview of nursing staff perspectives on providing palliative care for people with dementia demonstrates interdependent needs related to recognizing and addressing palliative care needs, communicating, handling challenging behaviour and building close care relationships. These care-related needs occur within workplace and organizational contexts. Organizational support is considered insufficient. Yet, healthcare organizations have the authority to fulfil a facilitating role in implementing nursing interventions tailored to nursing staff needs. Areas for further research include home care settings, the psychosocial and spiritual domains of palliative dementia care, advance care planning and family involvement.

Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia.

OBJECTIVES: To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully. DESIGN: A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010. SETTING AND PARTICIPANTS: Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia. MEASURES: The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations. RESULTS: Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making. CONCLUSIONS/IMPLICATIONS: Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.