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.

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).

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.

The economic costs of disease related malnutrition.

BACKGROUND & AIMS: Disease related malnutrition (under-nutrition caused by illness) is a worldwide problem in all health care settings with potentially serious consequences on a physical as well as a psycho-social level. In the European Union countries about 20 million patients are affected by disease related malnutrition, costing EU governments up to € 120 billion annually. The aim of this study is to calculate the total additional costs of disease related malnutrition in The Netherlands. METHODS: A cost-of-illness analysis was used to calculate the additional total costs of disease related malnutrition in adults (>18 years of age) for The Netherlands in 2011 in the hospital, nursing- and residential home and home care setting, expressed as an absolute monetary value as well as a percentage of the total Dutch national health expenditure and as a percentage of the total costs of the studied health care sectors in The Netherlands. RESULTS: The total additional costs of managing adult patients with disease related malnutrition were estimated to be € 1.9 billion in 2011 which equals 2.1% of the total Dutch national health expenditure and 4.9% of the total costs of the health care sectors analyzed in this study. CONCLUSIONS: The results of this study show that the additional costs of disease related malnutrition in adults in The Netherlands are considerable.

Malnutrition prevalence in The Netherlands: results of the annual dutch national prevalence measurement of care problems.

The objective of this study was to provide data on malnutrition prevalence in hospitals, nursing homes and home-care organisations in The Netherlands in a nationally representative sample, and to assess the factors such as age, sex, time since admission, ward type and disease for identifying patients at high risk of malnutrition. A cross-sectional, multi-centre design with a standardised questionnaire was used to measure the prevalence of malnutrition. Nutritional status was assessed by BMI, undesired weight loss and nutritional intake. In this study, 12 883 patients were included. The prevalence of malnutrition was the highest in hospitals (23.8 %), followed by home-care organisations (21.7 %) and nursing homes (19.2 %). Logistic regression analysis revealed no association with age, time since admission and ward type. Being female was associated with malnutrition only in nursing homes. Blood diseases, gastrointestinal tract diseases, infection, chronic obstructive pulmonary disease, dementia and cancer were the factors associated with malnutrition in hospitals. Dementia was associated with malnutrition in nursing homes, while gastrointestinal tract diseases, diabetes mellitus and cancer were the associated factors in home care. This study shows that malnutrition is still a substantial problem in hospitals, nursing homes and home care in The Netherlands. Malnutrition is a problem for more than one in five patients. Despite growing attention to the problem, more continued alertness is required.

Differences in nutritional care in pressure ulcer patients whether or not using nutritional guidelines.

OBJECTIVE: Malnutrition, characterized by a loss of lean body mass, enhances the risk of pressure ulcers (PUs). Because the intrinsic risk factor nutritional status in PU development can be influenced by practitioners' interventions, the use of clinical guidelines might be a satisfactory management approach. This study investigated the influence of using nutritional guidelines in daily practice on the actual nutritional care that PU (prone) patients receive, and barriers with regard to providing nutritional support were also explored. METHODS: A cross-sectional study was carried out in 1087 hospitals, nursing homes, and home care organizations in the Netherlands, Germany, and the United Kingdom. Because this study focused on comparing nutritional care in daily practice in PU (prone) patients using and not using nutritional guidelines, for the analyses two groups (health care organizations with and without guidelines) were identified. Differences between groups were tested using chi-square test and by analysis of variance. RESULTS: Respondents from 363 organizations participated in the study, of which 66.1% used nutritional guidelines for PU care in practice. Significant differences between organizations with nutritional guidelines versus organizations without guidelines were mostly on nutritional screening (P = 0.001) and the extent of nutritional assessments that included significantly more weight history recalls, weight measurements, and body mass index measurements (all P < 0.05). The most important barrier to providing nutritional support for PU (prone) patients in both groups was knowledge and skills. CONCLUSION: Using a nutritional guideline in PU care contributes to the amount of nutritional screening conducted in daily practice and to the content and extent of the assessment.