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.

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. OBJECTIVE: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. DESIGN: Scoping review. METHODS: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. RESULTS: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. CONCLUSIONS: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.

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.

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.