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.

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.

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/.

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 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.

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.

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 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.

Being sheltered from a demanding everyday life: experiences of the next of kin to people with dementia attending farm-based daycare.

PURPOSE: Farm-based daycare (FDC) is a type of daycare service for people with dementia. The aim of the present study was to explore the next of kin's experiences with FDC and how the service may affect their daily life. 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: We identified three main categories: (1) I am fine when you are fine, (2) Significant aspects of the service at the farm, and (3) FDC as a part of the dementia trajectory. The findings were summarized in one overarching, latent theme: "Being sheltered from a demanding everyday life". CONCLUSIONS: The findings indicate that next of kin's experience of respite is closely connected to the well-being of their relatives at the FDC and the quality of the service. FDC provides significant support through a part of the trajectory of dementia. Despite experiencing respite and support, next of kin continue to struggle with ethical and moral decisions about the futures of their relatives with dementia.

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.

Characteristics, Burden of Care and Quality of Life of Next of Kin of People with Dementia Attending Farm-Based Day Care in Norway: A Descriptive Cross-Sectional Study.

PURPOSE: Caring for people with dementia is often associated with burden of care and may influence the quality of life of the next of kin. The aim of this study was to describe the characteristics of the next of kin to people with dementia attending farm-based day care service (FDC) and identify characteristics associated with burden of care and quality of life (QoL) of next of kin. PARTICIPANTS AND METHODS: Ninety-four dyads of people with dementia and their next of kin were included from 25 FDCs in Norway in this descriptive cross-sectional study. The Relative Stress Scale (RSS) and the QoL-Alzheimer's Disease Scale (QoL-AD) were used as outcomes measures. RESULTS: The participants consisted of those who lived with a person with dementia (spouse/partner, 62%) and those who did not (children), with significant differences in age, education level, work employment, perceived social support, depression symptoms, burden of care, and QoL. In multiple regression models, RSS and QoL were associated with living with the person with dementia, anxiety symptoms and perceived social support. In addition, RSS was associated with neuropsychiatric symptoms (NPS) in the people with dementia. CONCLUSION: Our findings underline the importance of obtaining knowledge about the next of kin's burden of care and QoL, of people with dementia attending an FDC. This knowledge is essential for those responsible for providing the best possible services for the next of kin and for developing targeted interventions to support the next of kin.

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.

I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway.

OBJECTIVE: Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers' assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services. METHODS: An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis. RESULTS: Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am. CONCLUSIONS: People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.

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.

Care Farming for People with Dementia; What Can Healthcare Leaders Learn from This Innovative Care Concept?

There is growing recognition that traditional dementia care models fall short for people with dementia and their family caregivers. This has led to a call for new dementia care approaches. In response to this call, innovations in long-term dementia care are taking place both in the community and in residential care. One of these innovations is the care concept called "care farming." Care farms are farms that combine agricultural activities with care and support services for a variety of client groups, including people with dementia. Although the concept is being implemented in an increasing number of countries, the Netherlands and Norway are still front-runners in providing and researching this innovative dementia care approach. Over the last couple of years, several research projects have been carried out in these countries addressing a wide range of issues related to dementia care provision at care farms and using a wide range of research methods. This paper synthesizes the knowledge that has been generated in these research projects. By sharing the knowledge obtained in the Netherlands and Norway, we hope to inspire leaders in healthcare undertaking similar efforts to innovate care for the increasing number of people with dementia. By providing starting-points for future research, we additionally hope to contribute to a research agenda to further advance the field.

People with dementia attending farm-based day care in Norway - Individual and farm characteristics associated with participants' quality of life.

Farm-based day care for people with dementia is supposed to improve the participants quality of life by using activities and resources of the farm environment to promote mental and physical health. In this paper, we describe the characteristics of those attending farm-based day care services in Norway and explore the association between individual and farm characteristics and the quality of life. A sample of 94 people with dementia who attended farm-based day care was recruited from 25 farms between January 2017 and January 2018. The data collection was performed using standardized instruments. Information about the farms was retrieved from a former study. The association between the participants' quality of life and their individual and/or farm characteristics was examined with a linear multilevel regression model. The participants had a mean age of 76 years, 62% were men, and 68% had additional education after primary school. Most of them had mild (54.3%) or questionable dementia (18.3%). A few participants used antipsychotics (3.7%), tranquilizers (9.9%) and painkillers (13.6%), while a higher number used antidepressants (30.9%). Quality of life was associated with the experience of having social support (p = .023), a low score on depressive symptoms (p < .001), and spending time outdoors at the farm (p < .001). The variation between the farm-based day care services in the participants' reported quality of life was related to time spent outdoors at the farm. In light of the present study, it seems as farm-based day care is addressing people with dementia in an early stage, dominated by men, with quite good physical and medical condition. The strong association between quality of life and spending time outdoors underscores that facilitation for outdoor activity should be prioritized in all types of dementia care.

The experiences of dealing with consequences of an avalanche - surviving soldiers' perspectives.

Purpose: The aim of the study was to explore and describe experiences of daily life after having experienced an avalanche three decades ago.Method: This paper presents a qualitative study of 12 male survivors of an avalanche during their military service, interviewed 30 years post-disaster.Findings: A comprehensive understanding of the categories led to the latent theme "Finding my own way of managing and dealing with life". Findings revealed three categories describing experiences of daily living: (i) A comfortable life; (ii) A challenging, yet accomplished life; (iii) A demanding life. The first category represents a greater degree of using adaptive coping strategies for managing everyday life compared to the other two categories. The third category represents the group having the most challenging consequences. Among the three, the latter category conveys the most maladaptive coping strategies.Conclusions:The participants had different experiences with regards to their health and how they coped with their everyday life after the avalanche disaster. Insights into coping strategies may provide a guide for appropriate interventions for survivors dealing with traumatic events.