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

Experienced Quality of Post-Acute and Long-Term Care From the Care Recipient's Perspective-A Conceptual Framework

This article aims to conceptualize experienced quality of post-acute and long-term care for older people as perceived by care recipients. An iterative literature review and consultations with stakeholders led to the development of the INDividually Experienced QUAlity of Long-term care (INDEXQUAL) framework. INDEXQUAL presents the process of an individual care experience consisting of a pre (expectations), during (experiences), and post (assessment) phase. Expectations are formed prior to an experience by personal needs, past experiences, and word-of-mouth. An experience follows, which consists of interactions between the players in the caring relationships. Lastly, this experience is assessed by addressing what happened and how it happened (perceived care services), how this influenced the care recipient's health status (perceived care outcomes), and how this made the care recipient feel (satisfaction). INDEXQUAL can serve as a framework to select or develop methods to assess experienced quality of long-term care. It can provide a framework for quality monitoring, improvement, and transparency. (C) 2019 AMDA - The Society for Post-Acute and Long-Term Care Medicine

Kleinschalig wonen voor ouderen met dementie: de invloed op bewoners, mantelzorgers en medewerkers

De verpleeghuiszorg voor ouderen met dementie zet sterk in op een ontwikkeling naar kleinschalige woonvormen, zowel nationaal als internationaal. In kleinschalige woonvormen woont een beperkt aantal ouderen, in Nederland doorgaans zes tot acht personen, samen en wordt er zoveel mogelijk gestreefd naar een situatie zoals thuis. In een quasi-experimentele studie zijn de effecten van kleinschalige woonvormen onderzocht op bewoners (n = 259), mantelzorgers (n = 206) en verzorgenden (n = 305). Gedurende één jaar (nulmeting en vervolgmetingen na zes en 12 maanden) zijn hierbij twee typen verpleeghuiszorg met elkaar vergeleken: 28 kleinschalige woonvormen en 21 psychogeriatrische afdelingen in gewone verpleeghuizen. Matching werd toegepast om de vergelijkbaarheid van bewoners wat betreft cognitie en functionele status bij aanvang van de studie te vergroten. Het huidige onderzoek toont een genuanceerd beeld van kleinschalige woonvormen. Op de belangrijkste uitkomstmaten, zoals kwaliteit van leven en gedrag van bewoners en arbeidstevredenheid en –motivatie van verzorgenden, werden geen significante verschillen gevonden in vergelijking met gewone verpleegafdelingen. Deze uitkomsten geven aan dat kleinschalige woonvormen niet automatisch betere voorzieningen zijn dan gewone verpleeghuiszorg. Een volledige overgang naar kleinschalige woonvormen is daarom niet vanzelfsprekend. Gezien de heterogeniteit van de doelgroep is aanbevolen door middel van diversiteit keuzemogelijkheden te bieden voor mensen met dementie en hun naasten

Pain in older adults with dementia

Background: We aimed to explore the existing use of pain assessment tools and guidelines, and develop understanding of the practical considerations required to facilitate their use within the nursing home, hospital and community settings. Methods: A self-administered web-based survey was conducted with nurses, health and social care workers with an interest in the assessment of pain in older adults with cognitive impairment. The survey was distributed to participants in Austria, Belgium, Denmark, Germany, The Netherlands, Switzerland and United Kingdom. Results: Only a minority of staff reported use of (inter-)national or local standards or specific pain assessment tools in daily practice. A range of tools were reported as being used, which varied across country. While participants generally reported that these pain assessment tools were easy/very easy to use, many participants reported that they were difficult to interpret. Assessment is generally performed whilst providing nursing care. This was highlighted in 70–80% of all participating countries. While many of these tools rely on facial expression of pain, facial expressions were considered to be the least useful in comparison to other items. Furthermore findings showed that nurses employed in long-term care settings did not feel that they were educated enough in pain assessment and management. Conclusion: Our findings suggest that pain education is required across all countries surveyed. This should include a focus on guidelines and standards for assessment and subsequent management of pain. Findings suggest that clinical staff find interpreting facial expressions in relation to pain more difficult

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

Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study

Background: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (>= 65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. Methods: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. Results: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. Conclusions: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making