Interdisciplinary frontline teams in home-based healthcare services-paradoxes between organisational work structures and the trust model: a qualitative study.

BACKGROUND: Achieving access to quality healthcare services to ensure healthy lives and promote well-being for all at all ages is one of the United Nation's Sustainable Developments Goals. In view of this goal, sustainable community healthcare services in Norway need to be urgently restructured in light of demographic changes, including an increase in the percentage of older adults in the country. National healthcare policies recommend finding new ways to organise and perform services using new technology, new methods and new solutions. The goal is to ensure greater continuity in the provision of services and softer transitions that enable service users to deal with a smaller number of people. The trust model is one such suggested organisational approach. The goal of the trust model is to involve service users and their next of kin in decisions that concern them while also trusting frontline workers' professional judgement in assessing the need for services and adjusting them to address changes in the health of the users, thus making the services individually tailored and more flexible. This study aims to explore how organisational work structures influence the delivery of interdisciplinary home-based healthcare services. METHODS: Observations, individual-, and focus groups interviews were conducted within community home-based healthcare services in a large Norwegian city with managers at different levels, nurses, occupational therapists, physiotherapists, purchaser-unit employees and other healthcare workers. Data was analysed thematically. RESULTS: The results are presented in terms of themes- "Balancing on the margins: Negotiations between the time available, users' needs, unforeseen events and administrative tasks" and "One gathered unit, but with different work structures". The results identify organisational work structures that influence the performance of the trust model with regard to its intention of making flexible and individually tailored services available. However, these structures are different for the members of the interdisciplinary team, thus creating several paradoxes that need to be negotiated while fulfilling their daily responsibilities. CONCLUSION: This study suggests that it is crucial to pay attention to paradoxes and structures experienced by interdisciplinary frontline workers in home-based healthcare services, since they are unavoidable factors that need to be acknowledged when designing approaches for addressing the changes expected in community healthcare services.

In vivo effect of rFVIII and rFVIIa in hemophilia A rats evaluated by the Tail Vein Transection Bleeding Model.

BACKGROUND: Preclinical bleeding models increase current hemophilia A (HA) knowledge and aid the development of new pharmacological treatments. There are several well-established mouse bleeding models, but limited options are available for rat models despite their high resemblance to human disease process. OBJECTIVE: To provide a comprehensive description of the tail vein transection (TVT) bleeding model in HA rats and examine the correlation between in vivo pharmacological efficacy and global hemostatic assays. METHODS: The TVT bleeding model was implemented in HA rats and used to perform dose-response studies with recombinant coagulation factors VIIa (rFVIIa) and VIII (rFVIII). After the TVT bleeding model, whole blood and plasma were collected from rats and evaluated with thrombin generation test (TGT) and rotational thromboelastometry (ROTEM). RESULTS: Using the TVT bleeding model, the potency of rFVIII and rFVIIa treatments in HA rats were assessed, and the pharmacological windows established for rFVIII (≤15 U/kg) and rFVIIa (≤2.7 mg/kg). ED50 was estimated to be 1.75 U/kg for rFVIII and 0.37 mg/kg for rFVIIa, whereas complete normalization was observed with 15 U/kg and 2.7 mg/kg respectively. Furthermore, responses to rFVIII and rFVIIa in the TGT and ROTEM assays strongly correlated to in vivo pharmacological efficacy. CONCLUSION: The TVT bleeding model in HA rats is a useful tool to assess the pharmacodynamic effects of hemostatic compounds in vivo, and strongly correlates to results obtained with TGT and ROTEM in HA rats, adding further value to the HA rat model in preclinical research.

Perspectives on assistive technology among older Norwegian adults receiving community health services.

INTRODUCTION: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment. METHODS: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon. RESULTS: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic medical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care. CONCLUSIONS: This study reveals that older adults' perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical perspectives on AT implementation, is required for this group. TRIAL REGISTRATION NUMBER: The Norwegian Research Council, Number 47996, funds the Assisted Living Project (ALP).IMPLICATIONS FOR REHABILITATIONThe study was useful in order to inform the health care services about older adults "perspectives on assistive technology".This study reveals the complexity of understanding perspectives towards and the use of assistive technology among older adults with or without cognitive impairment.This study contributes to the understanding of the interactions between the four components: humans, activities, technology and the context.

The power of observation. Occupational therapists' descriptions of doing observations of people with cognitive impairments in the context of community practice.

BACKGROUND: Observation is an important method for occupational therapists (OTs) to gather information on people's occupational performance; yet, not much research has been conducted on OTs' descriptions of doing observations in their practices. AIMS: This study aimed to explore community OTs descriptions of doing observations during the assessment of persons with cognitive impairments. MATERIAL AND METHODS: Nineteen OTs participated in focus group interviews. Thematic analysis with an inductive approach was performed. RESULTS: Three themes were revealed during analysis, the value of doing unstructured observations, the importance of doing observations in familiar contexts, and the importance of experience, structure and competence when doing observation. CONCLUSIONS AND SIGNIFICANCE: This study showed that the participants regarded observation as one of OTs' core competencies, and they described doing observations in different ways. The results emphasised the importance of doing unstructured observations in persons' familiar contexts when assessing persons with cognitive impairments. However, the participants highlighted the need for increasing OTs structure and competence through implementing more occupation-based standardised assessment tools for OTs in community services to facilitate evidence-based practice.

Occupational Therapy Interventions for Persons with Cognitive Impairments Living in the Community.

This study describes interventions provided by community occupational therapists for persons with cognitive impairments. Using an online questionnaire, a cross-sectional study was conducted, collecting data from 497 of the 1367 occupational therapists in Norwegian community-based services. The most common interventions provided were environmental modifications (87%), implementation of assistive devices (85%), and training of activities of daily life (ADL) (77%). Two main reasons to carry out these interventions were identified as the initial assessment of clients (89%) and expectations of others. The most preferred interventions were ADL training (77%), cognitive training (63%), and environmental modifications (56%). Chi-squared tests identified a significant difference (p < 0.001) between interventions provided and preferred interventions on all interventions except environmental modifications. The findings provide an insight into interventions provided for persons with cognitive impairments in community services.

Localization of the neuropeptides pituitary adenylate cyclase-activating polypeptide, vasoactive intestinal peptide, and their receptors in the basal brain blood vessels and trigeminal ganglion of the mouse CNS; an immunohistochemical study.

Pituitary adenylate cyclase-activating polypeptide (PACAP) and vasoactive intestinal peptide (VIP) are structurally related neuropeptides that are widely expressed in vertebrate tissues. The two neuropeptides are pleiotropic and have been associated with migraine pathology. Three PACAP and VIP receptors have been described: PAC1, VPAC1, and VPAC2. The localization of these receptors in relation to VIP and PACAP in migraine-relevant structures has not previously been shown in mice. In the present study, we used fluorescence immunohistochemistry, well-characterized antibodies, confocal microscopy, and three-dimensional reconstruction to visualize the distribution of PACAP, VIP, and their receptors in the basal blood vessels (circle of Willis), trigeminal ganglion, and brain stem spinal trigeminal nucleus (SP5) of the mouse CNS. We demonstrated a dense network of circularly oriented VIP fibers on the basal blood vessels. PACAP nerve fibers were fewer in numbers compared to VIP fibers and ran along the long axis of the blood vessels, colocalized with calcitonin gene-related peptide (CGRP). The nerve fibers expressing CGRP are believed to be sensorial, with neuronal somas localized in the trigeminal ganglion and PACAP was found in a subpopulation of these CGRP-neurons. Immunostaining of the receptors revealed that only the VPAC1 receptor was present in the basal blood vessels, localized on the surface cell membrane of vascular smooth muscle cells and innervated by VIP fibers. No staining was seen for the PAC1, VPAC1, or VPAC2 receptor in the trigeminal ganglion. However, distinct PAC1 immunoreactivity was found in neurons innervated by PACAP nerve terminals located in the spinal trigeminal nucleus. These findings indicate that the effect of VIP is mediated via the VPAC1 receptor in the basal arteries. The role of PACAP in cerebral arteries is less clear. The localization of PACAP in a subpopulation of CGRP-expressing neurons in the trigeminal ganglion points toward a primary sensory function although a dendritic release cannot be excluded which could stimulate the VPAC1 receptor or the PAC1 and VPAC2 receptors on immune cells in the meninges, initiating neurogenic inflammation relevant for migraine pathology.

COVID-19 Vaccination Might Induce Reversible Cerebral Vasoconstriction Syndrome Attacks: A Case Report.

A 30-year-old male diagnosed three years previously with reversible cerebral vasoconstriction syndrome (RCVS) presented to the department of neurology with an accumulation of attacks mimicking previous RCVS attacks and fulfilling the diagnostic criteria for RCVS after receiving the first Pfizer COVID-19 vaccine. The neurologic exam, blood samples, electrocardiogram (ECG), and computer tomography of the head (CTC) were normal. The patient was treated with the angiotensin 2 receptor antagonist, losartan, with a good response and was discharged with a prescription for losartan lasting until three days after the second Pfizer COVID-19 vaccine. No further RCVS attacks were reported. These findings indicate that the COVID-19 vaccine might induce RCVS attacks in susceptible individuals, and targeting the angiotensin 2 receptor could be a preventive option.

Digital Assistive Technology to Support Everyday Living in Community-Dwelling Older Adults with Mild Cognitive Impairment and Dementia.

Objective: The objective of this review was to explore whether knowledge about and practice of technology for older adults with mild cognitive impairment (MCI) and dementia (D) had developed since our 2017 review. Furthermore, we wanted to explore the usability and acceptability of technology in the newer trials, and how these may impact quality of life, occupational performance and human dignity. Materials and Methods: We searched for primary studies published between 2017 and 2020 reusing medical subject heading (MeSH) terms in five databases - Medline, PsycINFO, Embase, Amed and Cinahl - and obtained 1452 titles. The titles were divided in six piles, two for each of the three authors. The titles were sorted utilizing the Rayyan web tool. Fourteen studies were included in this review. The Mixed Method Appraisal Tool (MMAT) was used to assess the quality of the studies examined. Results: This review included almost twice as many participants as in the 2007-2017 review. Since 2017, a shift seems to have occurred toward technologies that can be worn on the body to monitor body functions and report states, or imbalances. Moreover, research interest is now focused on mobile phone apps and wearables providing reminders and timely support, rather than on separate devices at home. Conclusion: The studies conducted since 2017 report on wearable and environmental digital assistive technologies and often with multiple purposes. Three strategies for support seem evident: prompting and reminding people with dementia, monitoring people with dementia at home using environmental sensors and biosensors and providing safety outdoors. Thus, there is still a need for further research on the impact of technologies promoting occupational performance, quality of life, and human dignity for independent living.

A vulnerable journey towards professional empathy and moral courage.

Background: Empathy and moral courage are important virtues in nursing and nursing ethics. Hence, it is of great importance that nursing students and nurses develop their ability to empathize and their willingness to demonstrate moral courage. Research aim: The aim of this article is to explore third-year undergraduate nursing students' perceptions and experiences in developing empathy and moral courage. Research design: This study employed a longitudinal qualitative design based on individual interviews. Participants and research context: Seven undergraduate nursing students were interviewed during or immediately following their final clinical placement. Ethical considerations: The Norwegian Social Science Data Services (NSD) approved the study. Participants were informed that their participation was voluntary and were assured confidentiality. They were informed that they could withdraw from the study at any time, without providing reasons. Findings: Affective empathy seemed to be strong among third-year undergraduate nursing students. However, they tried to handle the situations in a 'professional' way, and to balance their emotions. At the same time, they expressed how difficult it can be to show moral courage when confronted with poor patient care. In addition, they spoke about a lack of role models during clinical practice and supervision. Conclusions: Undergraduate nursing students are in a vulnerable position throughout their journey to become professional and to develop empathy and moral courage. The professional socialisation and forming of professional empathy and moral courage among nursing students, may be seen as a complex interaction of formal and hidden curriculum, where role models play an important role. We argue that the main theme 'Vulnerable students - a journey towards professional empathy and moral courage' may cover the longitudinal project as a whole. This vulnerability is something both teachers and supervisors should be aware of when following up with students in their clinical placements.

Self-reported quality of life in people with dementia attending a day-care programme in Norway: A 24-month quasi-experimental study.

The objectives of the study were (a) to compare self-reported Quality of Life (QoL) in a 24-month follow-up of people with dementia attending day care designed for people with dementia (day-care group, DC) with people with dementia who did not attend day care (control group, CG) and (b) to explore factors associated with QoL. A quasi-experimental design with a 24-month follow-up period was used. The DC group included 181 participants recruited from 53 day-care services. The CG included 76 participants recruited from 19 municipalities with no available day care designed for people with dementia. The sample covered the four health regions of Norway and inclusion period lasted from December 2013 to July 2015. The Quality of Life in Alzheimer's Disease (QoL-AD) scale was used as the outcome measure. The differences in QoL between groups and the associations between participant characteristics and QoL, such as depressive symptoms and functional dependency, were examined using a linear mixed model. In the multiple model, the overall trend in QoL did not differ significantly between the DC and CG. However, the DC group exhibited significantly higher self-reported QoL than the CG at all time points (p < 0.001 at T0, p = 0.018 at T12, and p = 0.006 at T24). Participants with shallow or no awareness who attended day care had significantly higher scores on QoL-AD than persons with full awareness (p = 0.017). More depressive symptoms (p < 0.001) and higher functional dependency (p < 0.001) were associated with lower self-reported QoL. The study revealed higher scores of self-reported QoL among people attending day care compared with those who did not attend, showing that day care might have positive impact on the lives of people with dementia.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Examining components of community psychosocial stroke interventions using concept mapping.

BACKGROUND: Stroke impacts psychosocial well-being and engagement in occupation. Psychosocial interventions reduce depression and anxiety but may not impact occupation. Knowledge of key processes and components of community psychosocial stroke interventions can inform future intervention development. AIM/OBJECTIVE(S): To determine the essential elements common to three psychosocial interventions for stroke survivors. MATERIAL(S) AND METHOD(S): Concept maps were created for three community psychosocial stroke interventions based on published literature and communication with researchers who tested the intervention with stroke survivors. The concept maps were then compared to identify common elements. Ongoing communication with researchers ensured accurate representation of each respective intervention. RESULTS: Similarities in intervention processes and components included support for autonomy; individualized information exchange; coping, life skill development and adaptation support; competence development; and the incorporation of goals. Differences included intervention delivery (individual versus group), and the avenues in which psychosocial needs are addressed (occupation versus dialogue). CONCLUSIONS: Concept mapping identified similarities among the three interventions that can be best understood using self-determination theory. Clinicians may utilize findings revealed in the process to inform evidence-based psychosocial stroke interventions. SIGNIFICANCE: Knowledge of key 'active ingredients' for psychosocial community stroke interventions, can be used to guide clinical reasoning and inform development of interventions.

Needs-led research: a way of employing user involvement when devising research questions on the trust model in community home-based health care services in Norway.

BACKGROUND: This paper presents a user involvement process, called needs-led research, conducted as a part of a doctoral degree project aiming to explore research priorities and, ultimately, to develop a final top 10 list of questions relevant to the field of research. There is evidence of a mismatch between what user groups within a research field find relevant to study and what is actually being done. User involvement is a method that can accommodate this, and there is a growing attention and amount of research in this field based on an understanding that people who receive health care services, and their next of kin and clinicians, are uniquely positioned to contribute to research in order to understand their experiences better and improve the services. This paper presents a user involvement process in a small-scale study, referred to as needs-led research, which concerns the 'performance of the trust model in community home-based health care services'. The process was conducted as part of a doctoral degree project. METHOD: The needs-led research process is inspired by the James Lind Alliance (JLA), which focuses on bringing together service users, next of kin and clinicians on equal terms to explore research priorities. The process consisted of five-steps, each of which involved representatives from service users, next of kin and clinicians: 1) narrowing down the theme; 2) steering group meeting; 3) gathering input through a survey; 4) data processing and interim priority setting; and 5) final priority setting. RESULTS: Almost 200 participants contributed during the five steps, 294 inputs were gathered, and 35 participants voted for the top 10 list. The top 10 list is presented. CONCLUSION: This paper provides an example of how user involvement can be employed to devise research questions that are relevant for clinicians, service users, next of kin and service providers concerning the 'performance of the trust model in home-based health care'. It also outlines some strengths and limitations of the process. The needs-led research process shows that user involvement in research is feasible for developing research questions in small-scale studies. We hope that the top 10 list presented will encourage future research to address issues of importance regarding the performance of the trust model in community home-based health care services.

User involvement is a topic that has received increasing attention in research aimed at ensuring relevant and needed knowledge. It can be practised in a variety of ways, and the literature claims that there is no gold standard for how it should be done. This paper presents a user involvement process conducted autumn 2019 to spring 2020, hereby referred to as needs-led research (NLR), inspired by the James Lind Alliance (JLA). The scope of the process is the 'performance of the trust model in community home-based health care services'. The trust model is a new way of organising home-based health care services where small interdisciplinary teams work with the service users and their next of kin on tailoring the services based on the users' answers to the question 'What matters to you?'Through a five-step process, in which representatives of service users, next of kin and clinicians participated in meetings and online surveys, the goal of the NLR process was to explore research priorities and, ultimately, to develop a final top 10 list of questions relevant to the field of research. This paper describes the NLR process and discusses its strengths and limitations. We found the process to be important when identifying relevant research questions concerning a topic on which little research has been conducted, and in which we as researchers have little experience. The final top 10 list is also presented.

Involving older adults in technology research and development discussions through dialogue cafés.

BACKGROUND: Citizen involvement is important for ensuring the relevance and quality of many research and innovation efforts. Literature shows that inadequate citizen involvement poses an obstacle during the research, development, and implementation of assistive technology. Previous studies have addressed the advantages and disadvantages of citizen engagement in health research and technology development, and there is concern about how to ensure valuable engagement to avoid situations where they don't have influence. Frail older adults are often excluded from being active partners in research projects. The overall objective of this commentary is to describe a case where dialogue cafés was used as a method for involving assisted living residents in technology discussions, elaborating on the following research question: In what ways are dialogue cafés useful for directing research and development and for engaging residents in assisted living facilities in assistive technology discussions? METHOD: Six dialogue cafés with assisted living residents as participants were carried out over a period of 3 years (2016-19). Reports that were written after each café by the group leaders and rapporteurs provide the material for the analyses in this paper. RESULTS: This study demonstrates an example of facilitating user involvement where the participants felt useful by contributing to research and discussions on assistive technology and where this contribution in fact directed the research and development in the overall Assisted Living Project. CONCLUSION: This study demonstrated that dialogue cafés enable older residents at an assisted living facility to contribute with opinions about their needs and perspectives on assistive technologies. This negates the view of older adults as too frail to participate and demonstrates the importance of including and collaborating with older adults in research.

Assistive technology is used to provide older adults with the opportunity to preserve their quality of life and their ability to cope in everyday life live independently longer and enhance participation in everyday life. This commentary describes dialogue cafés as a method for involving residents in an assisted living facility in discussions about assistive technology. It elaborates on how dialogue cafés are useful for directing research and development and for engaging older adults in assistive technology discussions. Six dialogue cafés were held between 2016 and 2019 with residents (aged between 65 to 92) as participants in an assisted living facility in Norway. Reports that were written after each café by the group leaders and rapporteurs provide the material for the analyses in this paper. The study demonstrated that the engagement process was found to be positive by the participants in the dialogue café groups. It also succeeded in directing the research and technology development in the project. The dialogue cafés seemed to demonstrate a two-way learning process for the researchers and the participants.

Intake of whole grain and associations with lifestyle and demographics: a cross-sectional study based on the Danish Diet, Cancer and Health-Next Generations cohort.

PURPOSE: The aim was to analyze the intake of whole grain (WG) and associations with lifestyle and demographics in a newly established cohort of Danish adults. METHODS: Between 2015 and 2019, Danes were enrolled into The Diet, Cancer and Health-Next Generations cohort. A total of 38,553 persons were included in the current cross-sectional study, where all completed a 376-item food frequency questionnaire, a lifestyle questionnaire, and a physical examination in a study center where physical measurements and biological samples were collected. RESULTS: The median intake of WG was 79 g/10 mega joule (MJ) and 54% of the participants consumed the amount of WG recommended in Denmark, which is 75 g/10 MJ. The probability of consuming the recommended amount of WG was highest among men, persons < 30 years, students, persons with body mass index (BMI) < 25 kg/m2, persons participating in sports, who did not exceed the recommended maximum intake of alcohol and did not smoke. The probability of having a low intake of WG defined as < 25 g/10 MJ was highest among persons with short education, BMI ≥ 25 kg/m2, persons not participating in sports, persons having an alcohol intake above the recommended maximum level and persons being active smokers. CONCLUSION: The median intake of WG was 79 g/10 MJ. The probability of consuming at least 75 g WG/10 MJ was highest among persons who also adhered to healthy lifestyle measured by other factors. Only 6% of the cohort participants consumed < 25 g WG/10 MJ, these persons were more likely to have a general less healthy lifestyle.

Community Health Care Workers' Experiences on Enacting Policy on Technology with Citizens with Mild Cognitive Impairment and Dementia.

PURPOSE: Assistive technologies and digitalization of services are promoted through health policy as key means to manage community care obligations efficiently, and to enable older community care recipients with mild cognitive impairment (MCI) and dementia (D) to remain at home for longer. The overall aim of this paper is to explore how community health care workers enacted current policy on technology with home-dwelling citizens with MCI/D. PARTICIPANTS AND METHODS: Twenty-four community health care workers participated in one of five focus group discussions that explored their experiences and current practices with technologies for citizens with MCI/D. Five researchers took part in the focus groups, while six researchers collaboratively conducted an inductive, thematic analysis according to Braun & Clarke. RESULTS: Two main themes with sub-themes were identified: 1) Current and future potentials of technology; i) frequently used technology, ii) cost-effectiveness and iii) "be there" for social contact and 2) Barriers to implement technologies; i) unsystematic approaches and contested responsibility, ii) knowledge and training and iii) technology in relation to user-friendliness and citizen capacities. CONCLUSION: This study revealed the complexity of implementing policy aims regarding technology provision for citizens with MCI/D. By use of Lipsky's theory on street-level bureaucracy, we shed light on how community health care workers were situated between policies and the everyday lives of citizens with MCI/D, and how their perceived lack of knowledge and practical experiences influenced their exercise of professional discretion in enacting policy on technology in community health care services. Overall, addressing systematic technology approaches was not part of routine care, which may contribute to inequities in provision of technologies to enhance occupational possibilities and meaningful activities in everyday lives of citizens with MCI/D. TRIAL REGISTRATION: NSD project number 47996.

Characteristics of patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare.

Objective: The aim of this study was to describe patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare and to examine factors associated with depression.Design: This was an observational study.Setting: Fourteen outpatient clinics and 33 general practitioners and municipality memory teams across Norway.Subjects: A total of 226 patients assessed in primary healthcare and 1595 patients assessed in specialist healthcare outpatient clinics.Main outcome measures: Cornell scale for depression in dementia (CSDD), Mini-Mental Status Examination (MMSE), Clock drawing test, Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Instrumental Activities of Daily Living, Personal Self-Maintenance Scale, Relatives' stress scale (RSS), and Neuropsychiatric Inventory Questionnaire (NPI-Q)Results: Patients assessed in primary healthcare were older (mean age 81.3 vs 73.0 years), less educated, had poorer cognition (MMSE median 22 vs 25), more limitations in activities of daily living (ADL), more behavioural and psychological symptoms of dementia (BPSD), more depressive symptoms (CSDD median 7 vs 5), more often lived alone (60% vs 41%) and were more often diagnosed with dementia (86% vs 47%) compared to patients diagnosed in specialist healthcare. Depression was associated with female gender, older age, more severe decline in cognitive functioning (IQCODE, OR 1.65), higher caregiver burden (RSS, OR 1.10) and with being assessed in primary healthcare (OR 1.53).Conclusion: Post-diagnostic support tailored to patients diagnosed with dementia in primary healthcare should consider their poor cognitive function and limitations in ADL and that these people often live alone, have BPSD and depression.Key pointsPeople diagnosed in Norwegian primary healthcare had more needs than people diagnosed in specialist healthcare. • They were older, less educated, had poorer cognitive functioning and activity limitations, more often lived alone, and had more BPSD and depression. • Depression was associated with being female, older, having cognitive decline, being assessed in primary care and the caregiver experiencing burden • Post diagnostic support for people with dementia should be tailored to the individual's symptoms and needs.

A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT.

BACKGROUND: People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision. OBJECTIVES: To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes. DESIGN: The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible. SETTING: Nursing homes in England providing care for people with dementia. PARTICIPANTS: Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff. INTERVENTION: Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement. MAIN OUTCOME MEASURES: The two contender primary outcome measures were Comfort Assessment in Dying - End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data - health economic outcomes, medication/service use and intervention activity. RESULTS: Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia (n = 32) were recruited in intervention (n = 18) and control (n = 14) homes. Informal carers (total, n = 12: intervention, n = 5; control, n = 7) and 97 staff from eight sites (intervention, n = 75; control, n = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported. CONCLUSIONS: A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification. FUTURE WORK: In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context. TRIAL REGISTRATION: Current Controlled Trials ISRCTN14948133. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 6. See the NIHR Journals Library website for further project information.

Namaste Care is a programme of respectful stimulation for nursing home residents who have advanced dementia. It is person-focused and reflects residents' individual likes and interests. It is claimed that Namaste Care improves quality of life for residents, family and staff, and quality of dying for residents, and can be provided without additional cost. This study explored how feasible it would be to conduct a large study in the future to understand the effects of Namaste Care on people with advanced dementia. Our literature review showed that Namaste Care enables people with advanced dementia to have moments of connection with others. We refined some Namaste Care resources through working with care home staff, family and volunteers to create a user-friendly booklet. Eight care homes were recruited to our 6-month trial; four homes were supported to introduce Namaste Care, two continued as usual and two withdrew. In the four intervention homes, residents with advanced dementia received Namaste Care. Staff used standard measures to assess (1) residents' responses and (2) the economic costs and benefits of Namaste Care. Researchers made observation visits. Records of activity in Namaste Care sessions were completed, and interviews were held with staff and family. Residents wore an ActiGraph (Activinsights Ltd, Kimbolton, UK) device that recorded their levels of sleep and activity. The length and frequency of Namaste Care sessions varied. Nursing homes incurred additional costs but could see ways to reduce those. All residents accepted wearing an ActiGraph device. Staff completed the data collection tools; some measures were more informative than others. Data from interviews showed that most people had positive experiences of Namaste Care. The findings support the view that Namaste Care has benefits for people with advanced dementia in nursing homes. We consider that, with some changes, this trial offers a model for a large study to show whether or not Namaste Care could be promoted more widely.

The assisted living project: a process evaluation of implementation of sensor technology in community assisted living. A feasibility study.

Introduction: The ageing population has been described as a grand societal challenge worldwide, and access to technology is one important strategy for meeting this challenge. The Assisted Living Project has a responsible research and innovation approach and includes older adults in evaluating sensor-based functions in assisted living facilities. The purpose of involving users in research is to enhance a wider dialogue about the values, methods, and purposes of the research project.Methods: We carried out a feasibility study in order to inform the development and conduct of a pilot project with eight residents. The purposes were to evaluate the process of technology installation, the feasibility of the technology, and methods for user involvement. One resident, Hilda, gave her informed consent to take part in this feasibility study. Her sensor system consisted of two magnetic sensors, six pyroelectric infrared motion sensors, one power sensor, one push button by the entrance door, and one loudspeaker. The sensors were wirelessly connected to a controller, which registered and transmitted all data to a secure server.Results: The feasibility study suggested important modifications for the pilot project, which concerned pre-configuration of the sensors, securing efficiently, rapid installation, number of visitors during the installation, preparation necessitating a site acceptance test for the wireless network and environmental prerequisites for mounting the sensors. Furthermore, this study recommends that the signals that are transmitted from the sensors to the secure server need verification.Conclusion: A feasibility study provides an opportunity to inform develop and conduct of a main trial. The MRC framework was useful for doing a process evaluation to assess feasbility and quality of implementation, clarify causal mechanisms and identify contextual factors associated with variations in outcome. Implications for rehabilitationThe feasibility study was useful in order to develop sustainable technological solutions byevaluating the robustness of the technologyconsider challenges regarding the architectural features/requirements for mounting sensors etc.decide user needs for individual tailoring to reach a 'person-fit' technologyUser participation in a feasibility study is vital to learn about the end user's needs and expectations regarding information, technical support, for support in daily use and follow-up.Transdisciplinary collaboration in the feasibility study is necessary to inform the main technology implementation project.