Clinical expressions, characteristics and treatments of confirmed COVID-19 in nursing home residents: a systematic review.

BACKGROUND: The coronavirus 2019 (COVID-19) pandemic has led to a high rate of infections, frequent outbreaks, and high mortality rates in nursing homes (NH) worldwide. To protect and improve the treatment and care of the vulnerable NH population, it is pivotal to systematise and synthesise data from cases of COVID-19 among NH residents. In our systematic review, we therefore aimed to describe the clinical expressions, characteristics, and treatments of NH residents confirmed to have COVID-19. METHODS: We conducted two comprehensive literature searches in several electronic databases: (1) PubMed, (2) CINAHL, (3) AgeLine, (4) Embase, and (5) PsycINFO in April and July 2021. Of the 438 articles screened, 19 were included in our sample, and we used the Newcastle-Ottawa Assessment Scale to assess the quality of the reported studies. A weighted mean (Mweighted), was calculated to account for the large variation in sample sizes of the studies, and due to heterogeneity among the studies, we report our findings in a narrative synthesis. RESULTS: According to the mean weights (Mweighted), common symptoms and signs in NH residents confirmed to have COVID-19 were fever (53.7%), cough (56.5%), hypoxia (32.3%), and delirium or confusion (31.2%). Common comorbidities were hypertension (78.6%), dementia or cognitive impairment (55.3%), and cardiovascular diseases (52.0%). Six studies presented data concerning medical and pharmacological treatments, such as inhalers, oxygen supplementation, anticoagulation, and parenteral/enteral fluids or nutrition. The treatments were used to improve outcomes, as part of palliative care, or as end-of-life treatment. Transfers to hospital for NH residents with confirmed COVID-19 were reported in six of the included studies, and the rate of hospital transfers ranged from 6.9% to 50% in this population. In the 17 studies reporting mortality, 40.2% of the NH residents died during the studies' observation periods. CONCLUSIONS: Our systematic review allowed us to summarise important clinical findings about COVID-19 among NH residents and to identify the population's risk factors for serious illness and death caused by the disease. However, the treatment and care of NH residents with severe COVID-19 warrant further investigation.

Lifeworld perspectives of people with dementia: a meta-aggregation of qualitative studies.

OBJECTIVES: This meta-aggregation aims to interpret and synthesize present knowledge on the lifeworld perspectives of people with dementia and develop a model for guidance in clinical practice. METHOD: The data consist of four meta-syntheses describing different lifeworld perspectives in accordance with van Manen's existentials: lived relations, lived space, lived time and lived body. The meta-aggregation summarizes a range of views expressed by people with dementia in qualitative, interview-based studies, with the aim of generating a reliable model based on the studies' findings. RESULTS: In total, 88 studies among 1,191 persons with dementia were included. Sixteen areas of focus were found, representing four perspectives: (a) lived relations, consisting of connectedness, independence, equality and competence; (b) lived space, consisting of belonging, meaningfulness, safety and security, and autonomy; (c) lived time, consisting of being rooted in the past, being in the present, viewing the future and being in process; and (d) lived body, consisting of being functional, trustworthy, adaptable and presentable. A model shaped as a tree trunk captures the lifeworld perspectives of people with dementia. CONCLUSION: Sixteen areas were revealed from this meta-aggregation and form the basis of a model. This model may be used as a guide for health care personnel to ensure the overall lifeworld-perspectives of people with dementia in care for the target group and conduct lifeworld-preserving care with a person-centred approach.

Fun and a meaningful routine: the experience of physical activity in people with dementia.

BACKGROUND: Physical activity is important to health and wellbeing. People with dementia are less physically active than their cognitively healthy counterparts. Reasons for this are multifaceted, and are thought to be social, psychological, and physiological. People with dementia often use services such as home care, day care centres and nursing home, and according to the stage of disease they are less or more dependent on other people to take part in activities. To develop appropriate services to this patient group, their needs and preferences regarding physical activity must be recognized. The aim of the study was therefore to provide insight into experiences with physical activity in people with dementia. METHODS: The current study is part of a larger research project on needs in people with dementia. The main project included qualitative semi-structured interviews with 35 persons with dementia. 27 of the participants talked about their experience with physical activity. In the current study, the relevant findings on this theme were analysed separately. A phenomenological hermeneutic research design was applied. RESULTS: The analysis revealed three main categories regarding experiences with physical activity. To be physically active provided positive experiences such as feelings of mastering and post-exercise euphoria. To be physically active was meaningful. The daily walk was an important routine to many, and it gave meaningful content to the day. Keeping up with activities confirmed identity. Lastly, to be active was perceived as challenging. Participants described different barriers to being physically active such as a decline of physical function, lack of motivation and being dependent on others to go out. CONCLUSIONS: Many of the participants expressed that being physically active was important to them. It is essential that informal and formal carers are aware of the role physical activity plays in the lives of many people with dementia, so that appropriate measures can be taken to assure continued active living in order to preserve health and quality of life.

The facilitation of user-involvement for people with dementia as experienced by health care professionals: A qualitative study using focus groups.

OBJECTIVE: The main objective of this study was to explore how health care professionals experience adaptation of user-involvement for people with dementia receiving health and social care. METHOD: A qualitative explorative design was used with eight focus groups as the method of data collection. A total of 49 health care professionals were included representing a variety of professions, municipal and specialized health services, and all health regions of Norway. The transcribed focus group interviews were analyzed using qualitative content analysis following six steps to identify categories and the overall theme. RESULTS: Six main categories were identified: 1) facilitation of self-determination, 2) challenges of reduced or lack of awareness, 3) family caregivers' concern and protection, 4) open communication, 5) establishing a trustworthy relationship, and 6) clarifying expectations. To maintain independent lives for people with dementia, health care professionals must facilitate and support shared decision-making using an open and trustworthy communication. CONCLUSION: To facilitate user-involvement, health care professionals need to develop and implement strategies that consider the perspectives of people with dementia and support the relationship between people with dementia and their informal caregivers.

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia - a qualitative study.

BACKGROUND: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. METHODS: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. RESULTS: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. CONCLUSIONS: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis.

INTRODUCTION: For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia. METHOD: This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis. RESULTS: Four categories were revealed: (1) rooted in the past - "I am the same as before"; (2) focussing on the present - "Nobody has tomorrow"; (3) thinking about the future - "What is going to happen to me?"; and (4) changes in the experience of self over time - "I used to…." The latent overall meaning was expressed as "being engaged with the dimensions of time." DISCUSSION/CONCLUSION: The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.

Balancing the struggle to live with dementia: a systematic meta-synthesis of coping.

BACKGROUND: People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia's experience of coping. METHODS: We conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses. RESULTS: This interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia. CONCLUSION: This meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.

The experience of lived space in persons with dementia: a systematic meta-synthesis.

BACKGROUND: Identifying how persons with dementia experience lived space is important for enabling supportive living environments and creating communities that compensate for the fading capabilities of these persons. Several single studies have explored this topic; however, few studies have attempted to explicitly review and synthesize this research literature. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding persons with dementia's experience of space. METHODS: A systematic, computerized search of AgeLine, CINAHL Complete, Embase, Medline and PsycINFO was conducted using a search strategy that combined MeSH terms and text words for different types of dementia with different descriptions of experience. Studies with 1) a sample of persons with dementia, 2) qualitative interviews as a research method and 3) a description of experiences of lived space were included. The search resulted in 1386 articles, of which 136 were identified as eligible and were read and assessed using the CASP criteria. The analysis was inspired by qualitative content analyses. RESULTS: This interpretative qualitative meta-synthesis included 45 articles encompassing interviews with 672 persons with dementia. The analysis showed that living in one's own home and living in long-term care established different settings and posed diverse challenges for the experience of lived space in persons with dementia. The material revealed four main categories that described the experience of lived space: (1) belonging; (2) meaningfulness; (3) safety and security; and (4) autonomy. It showed how persons with dementia experienced a reduction in their lived space due to the progression of dementia. A comprehensive understanding of the categories led to the latent theme: "Living with dementia is like living in a space where the walls keep closing in". CONCLUSION: This meta-synthesis reveals a process whereby lived space gradually becomes smaller for persons with dementia. This underscores the importance of being aware of the experiences of persons with dementia and the spatial dimensions of their life-world. To sustain person-centred care and support the preservation of continuity and identity, one must acknowledge not only the physical and social environment but also space as an existential experience for persons with dementia.

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries.

BACKGROUND: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. METHOD: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. RESULTS: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. CONCLUSION: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries.

BACKGROUND: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. METHODS: Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. RESULTS: The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. CONCLUSIONS: Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.

The Experience of Relations in Persons with Dementia: A Systematic Meta-Synthesis.

BACKGROUND: Dementia influences a person's experience of social relationships, as described in several studies. In this systematic meta-synthesis of qualitative studies, we aim to interpret and synthesize the experiences of persons with dementias and their relations with others. SUMMARY: Living with dementia changes life, leading to new social roles and different social statuses. Persons with dementia experience being disconnected and dependent on others, feeling like being a burden, and being a person who is treated in paternalistic ways. Family, friends and others with dementia might play significant roles in their ability to maintain a meaningful life. Key Messages: Three categories emerged from the data, change in life, change in relations, and maintenance of meaningful aspects in life; these categories are intertwined and essential in sustaining a lifeline for persons with dementia. The comprehensive meaning of the material is understood as the expression: Living a meaningful life in relational changes.

Palliative treatment and care for dying nursing home patients with COVID-19. / Behandling, omsorg og pleie for døende sykehjemspasienter med covid-19.

Frail elderly patients with multimorbidity are at high risk of serious illness and death in cases of corona virus infection. Unlike 'normal deaths' in nursing homes with time to prepare, the condition can change rapidly and cause organ failure. In this article we describe palliative non-invasive and invasive interventions for frail elderly patients in nursing homes who are dying due to COVID-19.

Treatment and Care for Nursing Home Residents with COVID-19: A Qualitative Study.

Purpose: Coronavirus disease 2019 (COVID-19) placed a significant strain on nursing homes, leading to numerous outbreaks and high mortality rates. This situation created considerable stress and challenges for residents, their physicians and nurses, as well as family caregivers. By understanding these challenges, we can gain new insights and learn valuable lessons. Thus, the purpose of this study is to examine the treatment and care provided to nursing home residents with COVID-19, as experienced by physicians, nurses, and family caregivers. Participants and Methods: This study is a secondary analysis of 35 interviews with physicians, nurses, and family caregivers, each with personal experience caring for nursing home residents diagnosed with COVID-19. The interviews took place from December 2020 to April 2021. We analyzed the transcriptions based on Braun and Clarke's reflexive thematic analysis model and followed a qualitative descriptive design as outlined by Sandelowski. Findings: The analysis produced three themes: 1) Balancing medical treatment, 2) The need for increased systematic monitoring of vital functions, and 3) Determining the treatment level for nursing home residents. These themes were explored through the unique perspectives of the three participant groups: physicians, nurses, and family caregivers. The findings revealed several challenges related to treatment and care for nursing home residents diagnosed with COVID-19. This applied both to relief of symptoms, monitoring of vital functions, assessment of treatment level and use of advance care planning. Conclusion: Drawing from the experiences of physicians, nurses, and family caregivers, there should be a unified plan at the municipal or national level for competency development in nursing homes to prepare for future crises like pandemics or epidemics. Additionally, the safe engagement of family caregivers and relatives should be given priority.

The transition of care from farm-based daycare for people with dementia: The perspective of next of kin.

PURPOSE: The aim of the present study was to explore the next of kin's experiences with the transition for people with dementia from a farm-based daycare (FDC) to another service in the municipality. METHODS: The study has a qualitative, descriptive design. Eight semi-structured interviews with next of kin were conducted. The data were analysed in accordance with content analysis. RESULTS: Through the analysis three main categories were developed: (1) Bearing the burden, (2) Being in transition, and (3) Feeling supported. The transition period was highly stressful for next of kin due to the exacerbation of their relatives' dementia symptoms. The next of kin focussed on optimizing the everyday lives of their relatives with dementia, even at the expense of their own well-being. Most participants experienced support from FDC, healthcare services and their informal network. CONCLUSIONS: The study contributes important insights into the next of kin's experiences. Good quality service, close dialog, information, and support between the different part in the transition process, can be useful for the further development of services with good quality and to reduce the negative effects of care on next of kin.

Interdisciplinary Research: An Important Contribution to Dementia Care.

Authorities and research institutions emphasise and encourage interdisciplinary research to meet complex societal health challenges as dementia. However, studies that describe an interdisciplinary approach for dementia research are limited. What does it take for research to become interdisciplinary? Is it enough to include researchers from different disciplines? This paper reflects on an interdisciplinary approach to dementia research. Based on existing literature and theories, we elaborate the concept of interdisciplinarity, and how the perspective can contribute and improve dementia care.

Process of pain assessment in people with dementia living in nursing homes: a scoping review protocol.

INTRODUCTION: Pain is a common symptom in people with dementia; untreated, it reduces quality of life and causes suffering. People with dementia living in nursing homes most often have dementia in moderate to severe stages. The cognitive impairment, including language and communication difficulties, challenges pain assessment. Since pain is a subjective experience, self-reporting is the gold standard of assessment methods. Healthcare professionals are advised to help people with dementia communicate about their pain. The proposed scoping review is the first step in the development of a systematic pain assessment model for people with dementia living in nursing homes. The scoping review aims to identify, categorise and summarise knowledge on how pain assessment processes in this population are described in the literature, with a special focus on self-reporting. METHODS AND ANALYSIS: The scoping review will be conducted following the six-stage framework developed by Arksey and O'Malley, in addition to recent methodological developments. Systematic searches in CINAHL, Embase, Medline and PsycInfo will be conducted. The protocol follows the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P) and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklists, and the scoping review will adhere to the PRISMA-ScR checklist. The review will include research that concerns assessment of pain in people with dementia living in nursing homes. Studies will be evaluated for quality and ethical standards. The analysis process will follow Bradbury-Jones et al's PAGER framework. Patterns will be formed using thematic analysis. An overview of advances, gaps, evidence for practice and research recommendations associated with each pattern will be prepared. The research questions and results will be presented to and discussed in a reference group comprising nursing home residents, relatives, healthcare professionals and nursing home managers. ETHICS AND DISSEMINATION: The scoping review aims to collect and summarise data from available publications and does not require ethical approval. The final manuscript will be submitted to a peer-reviewed, open-access journal. REGISTRATION IN OPEN SCIENCE FRAMEWORK: https://osf.io/8kaf5/.

Emotional well-being in people with dementia - A comparative study of farm-based and regular day care services in Norway.

There is a focus on how to provide care for the increasing number of people with dementia, and day care services have been highlighted as an important service. The present study aims to provide an in-depth comparison of the emotional well-being of participants at farm-based and regular day care services related to different aspects of the care environments. We used the Maastricht Electronic Daily Life Observation-tool to observe and register aspects of the care environment at the services. Observations took place at ten farm-based day care services, with 42 participants, and seven regular day care centres, with 46 participants. Observed mood was considered an indicator for the emotional well-being of the participants and used as the primary outcome. The analyses showed a general positive mood for all participants, regardless of type of day care service. The unadjusted analyses showed more emotional well-being for the participants at farm-based day care across a range of factors compared to regular day care. The linear mixed model found that regardless of service type the activities (1) exercise and dancing, and (2) quiz, music and spiritual activities were associated with emotional well-being. In addition, social interaction, either with one person or two or more people, were also associated with emotional well-being regardless of service type. The mixed model further demonstrated an association between attending farm-based day care services and positive mood compared to regular day care services. Based on the findings social interaction and social activities seem important to emotional well-being. This highlights the social aspect of the day care services and future research should investigate how one can facilitate good social interactions at day care services. The positive association between farm-based day care services and emotional well-being may potentially reflect a positive influence of the farm setting and the farm service providers.

The experience of lived body as expressed by people with dementia: A systematic meta-synthesis.

INTRODUCTION: People with dementia undergo extensive bodily changes during the course of dementia. Even though this is largely unrecognised in the literature, these changes greatly impact on the persons' experiences of living with dementia. Consequently, health care professionals and family caregivers need to be aware of the implications this has for delivering care to people with dementia. Hence, a systematic review that synthesises the knowledge on this topic is called for. METHOD: This article presents a qualitative systematic meta-synthesis of interview studies with people with dementia. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Program criteria for qualitative studies were used to appraise the studies. Thirty-nine qualitative research studies were included in the review. The analysis followed the principles of interpretive synthesis. FINDINGS: When exploring people's experiences of their body when living with dementia, four categories emerge: (1) My body works; (2) My body betrays me; (3) Understanding and adapting to my body's changes; and (4) My body in relation to others. DISCUSSION/CONCLUSION: Every individual has their own personal experience of living with dementia; however, if health professionals fail to regard the body as more than an object, this may lead to the person's alienation both from the relation and from the body. The lived body experience has relational aspects as people with dementia are aware that others observe them, and they also observe others. Others' behaviour may affect the person's experience of body; one can perceive oneself as approved or denounced. People with dementia describe that a body that is capable and strong gives access to the world and to participation.

The experience of attending a farm-based day care service from the perspective of people with dementia: A qualitative study.

People with dementia have different needs, and it is important to have variation in the services that are offered for this population. Farm-based day care aims to meet this diversity in need, but research on such services is lacking. The present study provides knowledge about how people with dementia experience attending farm-based day care services in Norway. Ten semi-structured interviews were conducted for five different services, while the participants were at the farm. The interviews were analysed in accordance with the content analysis of Graneheim, U., & Lundman, B. (2004) [Nurse Education Today, 24(2), 105-112] and revealed three main categories that included (1) social relations, (2) being occupied at the farm, and (3) individually tailored service. The findings were summarised in the overall theme that attending day care at a farm makes me feel like a real participant. Our findings indicate that the farm-based day cares in the present study provide person-centred care. The farm setting facilitates services that are tailored to the individual, where the participants get to use their remaining resources and spend time outdoors. Further, farm-based day care was described as being suitable for people with or without farm experience and must be seen as an important supplement to regular day care for those who could benefit from a more active service.