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 formul...

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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.

Background The transition from home to a nursing home is a common care process experienced by older persons with dementia and their informal caregivers. This transition process is often experienced as fragmented and is paired with negative outcomes for both older persons (e.g. mortality) and informal caregivers (e.g. grief). Due to the central role that informal caregivers play, it is crucial to capture their experiences throughout all phases of the transition. Methods A secondary data analysis was conducted using an interpretative phenomenological design. A total of 24 informal caregivers of older persons with dementia, moving to a nursing home, participated in in-depth interviews. Data were collected between February 2018 and July 2018 in the Netherlands. Data were analysed using Interpretative Phenomenological Analysis. Results The transition experiences are characterised by three paradoxes: (i) contradicting emotions during the transition process; (ii) the need for a timely transition versus the need to postpone the transition process and (iii) the need for involvement versus the need for distance. All paradoxes are influenced by the healthcare system. Conclusions The identified paradoxes show the impact of the healthcare system and the importance of timely planning/preparing for this transition on the experiences of informal caregivers. In addition, it provides healthcare professionals insight into the thought processes of informal caregivers. Future research can use these paradoxes as a foundation to develop innovations aiming to improve the transition process from home to a nursing home for informal caregivers and, consequently, older persons.

Nursing staff play a central role in the palliative care for people with dementia. Development of their palliative care competences may support timely recognition and addressing of individual needs of persons with dementia and their family caregivers in long term care. In the DEDICATED (Desired Dementia Care Towards End of Life) project, we aim to develop materials to support nursing staff in providing palliative dementia care. The first step of the project concerned a needs assessment, mapping the perspectives of nursing staff, family caregivers and people with dementia (scoping review, surveys and semi-structured interviews). Using these studies’ results as a starting point, an intervention (the DEDICATED approach) was built, using an iterative co-creation approach involving nursing staff and educators (N=12). These ‘ambassadors’ were also trained to disseminate the approach within their care teams and nursing curricula. First reactions from the pilot study regarding the DEDICATED-materials are positive and nurses and nurse educators are eager to use the materials (www.dedicatedwerkwijze.nl). Currently the DEDICATED-approach is being evaluated using a mixed methods pretest-posttest controlled design comparing three groups: a design group (12 wards), a test group (28 wards, 28 new-trained ambassadors) and a control group (12 wards). The main outcomes of study are e.g. self-efficacy, empowerment and engagement in providing palliative care for people with dementia. A secondary outcome involves longitudinal trends of the quality of dying of persons with dementia within the group.