Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Nature-based social interventions to address loneliness among vulnerable populations: a common study protocol for three related randomized controlled trials in Barcelona, Helsinki, and Prague within the RECETAS European project.

BACKGROUND: The negative effects of loneliness on population health and wellbeing requires interventions that transcend the medical system and leverage social, cultural, and public health system resources. Group-based social interventions are a potential method to alleviate loneliness. Moreover, nature, as part of our social and health infrastructure, may be an important part of the solutions that are needed to address loneliness. The RECETAS European project H2020 (Re-imagining Environments for Connection and Engagement: Testing Actions for Social Prescribing in Natural Spaces) is an international research project aiming to develop and test the effectiveness of nature-based social interventions to reduce loneliness and increase health-related quality of life. METHODS: This article describes the three related randomized controlled trials (RCTs) that will be implemented: the RECETAS-BCN Trial in Barcelona (Spain) is targeting people 18+ from low socio-economic urban areas; the RECETAS-PRG Trial in Prague (Czech Republic) is addressing community-dwelling older adults over 60 years of age, and the RECETAS-HLSNK trial is reaching older people in assisted living facilities. Each trial will recruit 316 adults suffering from loneliness at least sometimes and randomize them to nature-based social interventions called "Friends in Nature" or to the control group. "Friends in Nature" uses modifications of the "Circle of Friends" methodology based on group processes of peer support and empowerment but including activities in nature. Participants will be assessed at baseline, at post-intervention (3 months), and at 6- and 12-month follow-up after baseline. Primary outcomes are the health-related quality-of-life according to 15D measure and The De Jong Gierveld 11-item loneliness scale. Secondary outcomes are health and psychosocial variables tailored to the specific target population. Nature exposure will be collected throughout the intervention period. Process evaluation will explore context, implementation, and mechanism of impact. Additionally, health economic evaluations will be performed. DISCUSSION: The three RECETAS trials will explore the effectiveness of nature-based social interventions among lonely people from various ages, social, economic, and cultural backgrounds. RECETAS meets the growing need of solid evidence for programs addressing loneliness by harnessing the beneficial impact of nature on enhancing wellbeing and social connections. TRIAL REGISTRATION: Barcelona (Spain) trial: ClinicalTrials.gov, ID: NCT05488496. Registered 29 July 2022. Prague (Czech Republic) trial: ClinicalTrials.gov, ID: NCT05522140. Registered August 25, 2022. Helsinki (Finland) trial: ClinicalTrials.gov, ID: NCT05507684. Registered August 12, 2022.

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

COVID-19 pandemic and mortality in nursing homes across USA and Europe up to October 2021.

PURPOSE: We compared the prevalence of COVID-19 and related mortality in nursing homes (NHs) in 14 countries until October 2021. We explored the relationship between COVID-19 mortality in NHs with the average size of NHs and with the COVID-19 deaths at a population level. METHODS: The total number of COVID-19 cases and COVID-19-related deaths in all NHs as well as the total number of NHs and NH beds were provided by representatives of 14 countries. The population level respective figures in each country were provided up to October 2021. RESULTS: There was a wide variation in prevalence of COVID-19 cases and deaths between countries. We observed a significant correlation between COVID-19 deaths in NHs and that of the total population and between the mean size of NHs and COVID-19 deaths. CONCLUSION: Side-by-side comparisons between countries allow international sharing of good practice to better enable future pandemic preparedness.

The experiences and needs of frail older people receiving home health care: A qualitative study.

BACKGROUND: Due to the rapid ageing of the population, there is increasing demand for long-term care in the people's home environment. Such care aims to allow the people to stay at home and avoid hospitalisation or other institutional care. In home health care, care must be provided at the highest possible quality, with the focus on the people's needs and experiences. OBJECTIVES: This study explores the experiences and needs of frail older people receiving home health care. DESIGN AND METHODS: An exploratory descriptive qualitative approach was chosen. Audio-taped semi-structured interviews were conducted with fifteen older people receiving home health care. A content analysis was used to analyse the data collected. RESULTS: The content analysis identified one main theme, three categories and seven subcategories related to frail older people's needs and experiences of home health care. The main theme was quality of care. The first category, Safe and Secure Care, consisted of three subcategories: Education and Experience of Nurses, Information, and Continuity of Care in terms of personnel continuity and regular care. The second category, Autonomy, contained two subcategories: Decision-making and Self-sufficiency. The last category, Relationship with Professionals, consisted of two subcategories: Personality of Nurse and Partnerships. CONCLUSION: Older people are able to express their satisfaction or dissatisfaction with home health care. The results of this study revealed that the quality of care is crucial for frail older people. IMPLICATION FOR PRACTICE: The provision of home health care is inherently highly specific; home care nurses should work to provide the highest possible quality of care. In particular, nurses should focus on ensuring that the care they provide is safe, effective, timely, efficient and person-centred.

Geriatric Depression and Inappropriate Medication: Benefits of Interprofessional Team Cooperation in Nursing Homes.

An investigation of inappropriate medication use in treatment of depressivity in institutionalized older adults, based on a nurse-led evaluation of functional status and depressive symptoms in nursing home residents. Methods: A cross-sectional multicenter study was performed using records from 1087 residents cared for in fifteen nursing homes (NHs) in the Czech Republic. Inclusion criteria were being a permanent resident of one of the facilities, being 60 years of age or older, having a Geriatric Depression Scale score of 6 or more, and having a Mini Mental State examination score 10 or more. The final sample for analysis included 317 depressed NH residents. Results: 52 percent of NH residents with depressivity had no antidepressant treatment. Benzodiazepines were the only medication in 16 percent of depressed residents, and were added to antidepressant treatment in 18 percent of residents. Benzodiazepine users had significantly higher GDS scores compared to non-users (p = 0.007). Conclusion: More than half of depressed NH residents remained without antidepressant treatment. Residents inappropriately treated with benzodiazepines were more depressed than residents treated with antidepressants only, or even not treated at all. Cooperation of the interprofessional team in the screening of depressive symptoms has the potential to improve the quality of care.

Financial balance of home nursing care providers in the Czech Republic.

BACKGROUND: To enable people to live in old age in their own homes often requires specialised home care services. Despite the high importance of these services, the finance of home nursing care (HNC) is still under-investigated in many countries. The aim of this paper was to describe the finance of HNC in the Czech Republic. METHODS: Balancing of revenues and costs was done using structured questionnaires from the closed accounting year 2018 as a monthly average. Nonparametric Kruskal-Wallis and Wilcoxon signed ranks tests were used to test hypotheses. RESULTS: Data from 62 providers were analysed. The data included information from a total of 2297 patients and 995 employees. The average of total costs were € 17,591.7 (95% CI 14,175.3 - 21,008.1) and average of total revenues were € 17,276.5 (95% CI 13,923.5 - 20,629.5). The average cost per a patient was € 516.0 (95% CI 465.9-566.1) and the average revenues were € 500.1 (95% CI 457.0-543.3). CONCLUSIONS: The overall financial balance of HNC providers seems to be balanced in the Czech Republic. Nevertheless, insurance, although it should, did not cover all the costs. Micro- providers tended to be cheaper regarding the hours worked by nurses.

The Integration of Psychosocial Care into National Dementia Strategies across Europe: Evidence from the Skills in DEmentia Care (SiDECar) Project.

There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were found. They were analyzed by content analysis to identify the main pillars associated with the topic of psychosocial care and interventions. Specifically, three categories emerged: (1) Treatment, (2) Education, and (3) Research. The first one was further divided into three subcategories: (1) Person-centred conceptual framework, (2) Psychosocial interventions, and (3) Health and social services networks. Overall, the topic of psychosocial care and interventions has been addressed in all the country policies. However, the amount of information provided differs across the documents, with only the category of 'Treatment' covering all of them. Furthermore, on the basis of the existing policies, how the provision of psychosocial care and interventions would be enabled, and how it would be assessed are not fully apparent yet. Findings highlight the importance of policies based on a comprehensive and well-integrated system of care, where the issue of psychosocial care and interventions is fully embedded.

The needs of older people receiving home care: a scoping review.

BACKGROUND: Most people in a state of illness or reduced self-sufficiency wish to remain in their home environment. Their physiological needs, and their psychological, social, and environmental needs, must be fully met when providing care in their home environment. The aim of this study is to provide an overview of the self-perceived needs of older people living with illness or reduced self-sufficiency and receiving professional home care. METHODS: A scoping review of articles published between 2009 and 2018 was conducted by searching six databases and Google Scholar. Inductive thematic analysis was used to analyze data from the articles retrieved. RESULTS: 15 articles were included in the analysis. Inductive thematic analysis identified six themes: coping with illness; autonomy; relationship with professionals; quality, safe and secure care; role in society; environment. CONCLUSION/DISCUSSION: Older home care patients living with chronic illness and reduced self-sufficiency are able to express their needs and wishes. Care must, therefore, be planned in line with recipients' needs and wishes, which requires a holistic approach.

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto.

OBJECTIVE: To provide a new perspective on integrated biomedical and psychosocial dementia research. BACKGROUND: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. HYPOTHESES: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. MANIFESTO: We provide a Manifesto on how to significantly move forward the dementia research agenda.

Regulated upon activation, normal T cell expressed and secreted (RANTES) levels in the peripheral blood of patients with Alzheimer's disease.

Alzheimer's disease (AD) is the most common type of dementia, but it is very difficult to diagnose with certainty, so many AD studies have attempted to find early and relevant diagnostic markers. Regulated upon activation, normal T cell expressed and secreted (RANTES, also known as C-C chemokine ligand) is a chemokine involved in the migration of T cells and other lymphoid cells. Changes in RANTES levels and its expression in blood or in cerebrospinal fluid have been reported in some neurodegenerative diseases, such as Parkinson's disease and multiple sclerosis, but also in metabolic diseases in which inflammation plays a role. The aim of this observational study was to assess RANTES levels in peripheral blood as clinical indicators of AD. Plasma levels of RANTES were investigated in 85 AD patients in a relatively early phase of AD (median 8.5 months after diagnosis; 39 men and 46 women; average age 75.7 years), and in 78 control subjects (24 men and 54 women; average age 66 years). We found much higher plasma levels of RANTES in AD patients compared to controls. A negative correlation of RANTES levels with age, disease duration, Fazekas scale score, and the medial temporal lobe atrophy (MTA) score (Scheltens's scale) was found in AD patients, i.e., the higher levels corresponded to earlier stages of the disease. Plasma RANTES levels were not correlated with cognitive scores. In AD patients, RANTES levels were positively correlated with the levels of pro-inflammatory cytokines interleukin-6 and tumor necrosis factor-α, which is consistent with the well-known fact that AD is associated with inflammatory processes. RANTES levels were also positively correlated with insulin levels in AD patients, with insulin resistance (HOMA-R) and pancreatic beta cell function (HOMA-F). This study evaluated several clinical and metabolic factors that may affect plasma levels of RANTES, but these factors could not explain the increases in RANTES levels observed in AD patients. Plasma levels of RANTES appear to be an interesting peripheral marker for early stages of AD. The study was approved by the Ethics Committee of Institute of Endocrinology, Prague, Czech Republic on July 22, 2011.

The needs of older patients in hospital care: a scoping review.

BACKGROUND: Research into care for older patients in the hospital environment has become an increasingly valuable source of information, as it gives feedback on the quality of hospital care provided. The aim of this study is to provide a comprehensive overview of the self-reported needs of older people in hospital care. METHODS: The scoping review was conducted by searching the following databases: Medline, Web of Science, ProQuest Central, Scopus, Cinahl, PsycINFO and Summon. RESULTS: The search identified articles focusing on older people in hospital care. The majority of these articles address the system and quality of care for seniors at a somewhat general and theoretical level. Met and unmet needs were assessed by a variety of test methods focusing mainly on medical issues (e.g., Mini-Nutritional Assessment, ADLs-activities of daily living, Abbey Pain Scale) and mostly from the perspective of hospital staff, carers and relatives. Only 15 articles used assessments based on information and opinions obtained from the seniors themseAbstract_Paralves (self-reported needs). A thematic analysis revealed seven main themes: conduct and care in emergency departments, dignity, nutritional care, satisfaction of patients' needs, pain, caring with respect, decision-making and spiritual needs. CONCLUSION/DISCUSSION: The results of this scoping review suggest that more attention should be focused on information acquired from the patients themselves, as it is only the patient, however, old or frail, who can offer an accurate perspective on met or unmet needs and the quality of care provided.

Staff perspectives on the usability of electronic patient records for planning and delivering dementia care in nursing homes: a multiple case study.

BACKGROUND: The electronic patient record (EPR) has been introduced into nursing homes in order to facilitate documentation practices such as assessment and care planning, which play an integral role in the provision of dementia care. However, little is known about how the EPR facilitates or hinders these practices from the end-user's perspective. Therefore, the objective of this qualitative study was to explore the usability issues associated with the EPR for assessment and care planning for people with dementia in nursing homes from a staff perspective. METHODS: An exploratory, qualitative research design with a multiple case study approach was used. Contextual Inquiry was carried out with a variety of staff members (n = 21) who used the EPR in three nursing homes situated in Belgium, Czech Republic and Spain. Thematic analysis was used to code interview data, with codes then sorted into a priori components of the Health Information Technology Evaluation Framework: device, software functionality, organisational support. Two additional themes, structure and content, were also added. RESULTS: Staff provided numerous examples of the ways in which EPR systems are facilitating and hindering assessment and care planning under each component, particularly for people with dementia, who may have more complex needs in comparison to other residents. The way in which EPR systems were not customisable was a common theme across all three homes. A comparison of organisational policies and practices revealed the importance of training, system support, and access, which may be linked with the successful adoption of the EPR system in nursing homes. CONCLUSIONS: EPR systems introduced into the nursing home environment should be customisable and reflect best practice guidelines for dementia care, which may lead to improved outcomes and quality of life for people with dementia living in nursing homes. All levels of nursing home staff should be consulted during the development, implementation and evaluation of EPR systems as part of an iterative, user-centred design process.

COVID-19 highlights the need for universal adoption of standards of medical care for physicians in nursing homes in Europe.

The nursing home sector has seen a disproportionately high number of deaths as part of the COVID-19 pandemic. This reflects, in part, the frailty and vulnerability of older people living in care homes but has also, in part, been a consequence of the failure to include care homes in the systematic planning of a response to COVID, as well as a measure of neglect of standards and quality improvement in the sector. In response, the EUGMS published a set of medical standards of care developed in consultation with experts across its member national societies in 2015. The standards consisted of seven core principles of medical care for physicians working in nursing homes as a first step in developing a programme of clinical, academic and policy engagement in improving medical care for older people who are living and frequently also dying as residents in nursing homes. The gravity of the concerns arising for nursing home care from the COVID-19 pandemic, as well as emerging insights on care improvement in nursing homes indicate that an update of these medical standards is timely. This was performed by the writing group from the original 2015 guidelines and is intended as an interim measure pending a more formal review incorporating a systematic review of emerging literature and a Delphi process.

Self-reported needs and experiences of people with dementia living in nursing homes: a scoping review.

Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have frequently been shown to be unreliable. Therefore, this literature review aims to explore the self-reported needs and experiences of people with dementia in nursing homes.Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences.Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care.Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribution towards guiding evidence-based practice that is tailored to the needs of nursing home residents with dementia.

Demographic and Lifestyle Factors and Memory in European Older People.

OBJECTIVES: To investigate associations between demographic and lifestyle factors and memory performance in European people aged ≥60 years. METHODS: Data from 23,641 people with a mean age of 70.2 (95 % CI 70.1-70.3) were analyzed and drawn from the fourth wave of the Survey of Health, Ageing, and Retirement in Europe (SHARE). Generalized linear models were carried out to estimate the associations for both men and women. Memory performance was tested using two word-list learning tests with immediate and delayed recall in SHARE. RESULTS: age, severe limitations in physical activities, and any past alcohol problem were all negatively associated with memory performance. Contrarily, education level, higher nonalcoholic fluid intake, and engagement in sports activities more than once a week and in activities requiring a moderate level of energy were all positively associated with memory performance. Smoking showed a significant negative association only in the immediate recall test for both men and women together, whilst long-term illness showed association only in the delayed recall. Alcohol consumption was positively associated with memory performance in women, but in men, it depended on the drinking frequency. CONCLUSIONS: Demographic and lifestyle factors are associated with memory performance in the older population.

Dementia care in the Danube Region. A multi-national expert survey.

BACKGROUND: Dementia is a particularly severe societal challenge in several countries of the Danube Region due to higher-than-average increment in population longevity, disproportionate increase of the old-age dependency ratio, and selective outward migration of health care professionals. A survey was conducted among dementia experts to obtain a deeper understanding of the dementia care structures and services in this geographical area, and to identify the educational needs of health care professionals, and the availability of assistive technology. SUBJECTS AND METHODS: A standardized questionnaire was sent out to 15 leading dementia experts/clinicians in 10 Danube Region countries inquiring about professional groups involved in dementia care, availability and reimbursement of services, inclusion of dementia in professional education and training, acceptability of Internet-based education, and availability of assistive technology. The authors are the survey respondents. RESULTS: The majority of individuals with dementia receive care in the community rather than in institutions. The roles of medical specialties are disparate. General practitioners usually identify dementia symptoms while specialists contribute most to clinical diagnosis and treatment. Health care professionals, particularly those who work closely with patients and carers, have limited access to dementia-specific education and training. The greatest need for dementia-specific education is seen for general practitioners and nurses. An Internet-based education and skill-building program is considered to be equivalent to traditional face-to-face but offer advantages in terms of convenience of access. Assistive technology is available in countries of the Danube Region but is significantly underused. CONCLUSION: Dementia care in the Danube Region can be improved by an educational and skill-building program for health care professionals who work in the frontline of dementia care. Such a program should also attempt to enhance interdisciplinary and intersectorial collaboration, to intensify the interaction between primary care and specialists, and to promote the implementation of assistive technology.

Data of a sub-analysis of the DEMDATA study: characteristics of Austrian and Czech nursing homes residents.

OBJECTIVES: The aim of this data paper is to provide the data set of a sub-analysis of the DEMDATA study data. In the DEMDATA study, epidemiological data on the prevalence and severity of dementia, as well as functioning, behavioral problems and other health related factors in residents living in Austrian and Czech nursing homes were collected. The DEMDATA project further provides information on relatives' perception of the life Quality of residents, care team burden as well as environmental factors. Participating nursing homes were randomly drawn and stratified. Inclusion criteria for participation were that the resident was living permanently in the institution and that he/she and/or a legal representative (where relevant) had signed an informed consent. DATA DESCRIPTION: This paper provides data of cognitive, functional and behavioral assessments as well as other health related information of 1085 residents living in Austrian and Czech nursing homes. For each resident, several measurements on his or her cognitive, functional, and behavioral status are available. Also further health-related factors such as quality of life, pain, numbers of falls and hospital stays are provided.

Case Management for People with Dementia and its Translations: A Discussion Paper.

Case management is generally seen as a way to provide efficient, cost-saving person-centred care for people with dementia by connecting together fragmented services, but the available evidence in favour of its merits is often considered inconclusive, unclear and sketchy. This discussion paper investigates the evidence of the benefit of case management for people with dementia and explores the complexity of the concept and the experiences of its implementation. It offers a comprehensive framework for conceptualising various types of case management and asks the question: who can be a case manager? Building on examples from three European countries it addresses the problem of the expansion and adoption of the case management method. It compares the conventional model of diffusion of innovation with the ideas of interessement and co-constitution and envisions a successful model of case management as a fluid technology that is both friendly and flexible, allowing it to adapt to different settings and systems.

Electronic patient records as a tool to facilitate care provision in nursing homes: an integrative review.

Objective: The electronic patient record (EPR) has been introduced into nursing homes with the aim of reducing time spent on documentation, improving documentation quality and increasing transferability of information, all of which should facilitate care provision. However, previous research has shown that EPR may be creating new burdens for staff. The purpose of this literature review is to explore how EPR is facilitating or hindering care provision in nursing homes. Methods: An integrative literature review was carried out using four electronic databases to search for relevant articles. After screening, 22 articles were included for thematic synthesis. Results: Thematic synthesis resulted in six analytical themes linked to care provision: time for direct care; accountability; assessment and care planning; exchange of information; risk awareness; and person-centered care. Conclusion: For EPR to facilitate care provision in nursing homes, consideration should be given to the type of device used for documentation, as well as the types of applications, the functionality, content, and structure of EPR. Further research exploring the experiences of end users is required to identify the optimal characteristics of an EPR system specifically for use in nursing homes.