Aim: To investigate agreement between: (1) expected reasons and actual reasons for admission of people with dementia according to informal caregivers; (2) scores on measurement instruments prior to admission and the actual reasons for admission according to informal caregivers.

Background: Timely admission of people with dementia is a crucial issue. Information is highly warranted on whether informal caregivers are capable of prior identification of causes of admission and, can thus be considered a reliable prospective source on causes of admission.

Design: A cohort study among informal caregivers of people with dementia who made a transition to institutional long-term care.

Methods: Qualitative data on the expected and actual reasons for admission were collected via open-ended questions at baseline and follow-up. Furthermore, at baseline, data were collected using measurement instruments to measure pre-admission characteristics. Interviews took place between November 2010-April 2012. After categorizing the answers, the agreement between the expected and actual reasons was calculated. Furthermore, bivariate associations were calculated between the actual reasons for admission and scores on corresponding measurement instruments.

Results/Findings: For most informal caregivers, there was agreement between their statements on the expected reason and the actual reason for admission. A third of the caregivers showed no conformity. Bivariate associations showed that there is also agreement between the actual reasons for admission and scores on corresponding measurement instruments.

Conclusion: Informal caregivers can be considered reliable sources of information regarding what causes the admission of a person with dementia. Professional care should anticipate informal caregivers' statements and collaborate with them to strive for timely and appropriate admission. © 2014 John Wiley & Sons Ltd.

Introduction: Dementia implies progressive loss of mental and physical functions during the trajectory of the disease (Porter & Kaplan, 2012). Persons with dementia need involvement of various and several care providers throughout the stages of dementia, and more knowledge is needed about best practice strategies in this complexity of care (Gurner, 2001). The aim of the study was to explore professional care providers and stakeholders’ views of best practice in concepts of information, collaboration and communication in the care for persons with dementia in Sweden.

Method: The study had a qualitative approach based on three focus group interviews with a variation among participants regarding professions and workplaces to represent different types of care for persons with dementia from diagnosis to end of life care. The transcribed verbatim was analyzed with qualitative content analysis.

Preliminary results: In early stages primary health care specialized in dementia had close collaboration, training and mentoring, with memory clinic and home care. In the later stages the person with dementia had less frequent contacts with primary health care. Day care played an important role in information delivery of the disease, in collaboration with home and institutional care. In the latest stage the family had an important role as a proxy for the person with dementia about desires in the care.

Conclusion: A well-functioning network in professional care seems to have an impact on persons with dementia to remain at home despite loss of mental and physical functions.

On the behalf of RightTimePlaceCare consortium. http://www.righttimeplacecare.eu.

Background

Quality of life in persons with dementia is, in large part, dependent on the quality of care they receive. Investigating both subjective and objective aspects of quality of care may reveal areas for improvement regarding their care, which information may ultimately enable persons with dementia to remain living in their own homes while maintaining quality of life. The aim of this study was to 1) describe self-reported quality of life in persons with dementia at risk of nursing home admission. 2) describe subjective and objective aspects of quality of care, 3) investigate the significance of quality of care for quality of life.

Methods

A cross-sectional interview study design was used, based on questionnaires about quality of life (QoL-AD) and different aspects of quality of care (CLINT and quality indicators). The sample consisted of 177 persons with dementia living in urban and rural areas in Skåne County, Sweden. Descriptive and comparative statistics (Mann-Whitney U-test) were used to analyse the data.

Results

Based upon Lawton’s conceptual framework for QoL in older people, persons with pain showed significantly lower quality of life in the dimensions behavioural competence (p = 0.026) and psychological wellbeing (p = 0.006) compared with those without pain. Satisfaction with care seemed to have a positive effect on quality of life. The overall quality of life was perceived high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Furthermore, 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling.

Conclusion

This study indicates need for improvements in home care and services for persons with dementia at risk for nursing home admission. Registered nurses are responsible for nursing interventions related to pain, patient safety, skin care, prevention of accidents, and malnutrition. Therefore, it is of great importance for nurses to have knowledge about areas that can be improved to be able to tailor interventions and thereby improve quality of care outcomes such as quality of life in persons with dementia living at home. © 2017 The Author(s).

Background

The progression of dementia disease implies increasing needs for both informal and formal care and services but also risk of institutionalisation. To better adjust care and services in the phase preceding institutionalisation it is important to find out whether utilisation of formal and informal care and services is determined by increased needs and by who meets the needs.Aim

The aim was to compare persons with dementia (65+) with different levels of cognitive impairment, regarding utilisation of formal and informal care and service at home.Methods

The participants consisted of 177 persons with dementia ≥65 years old and at risk of nursing home admission, divided into groups according to their cognitive function. Structured interviews were conducted based on questionnaires about type and amount of formal and informal care utilised, as well as questions regarding cognitive impairment, dependency in activities of daily living (ADLs) and neuropsychiatric symptoms. To analyse the data, descriptive and comparative statistics were used.Results

The findings revealed that the group with severe dementia used significantly more help with ADLs and supervision in terms of time (number of hours and days) provided by the informal caregiver, compared with the group with moderate dementia. Utilisation of formal care and services was highest in the group with the most severe cognitive impairments (Standardized Mini-Mental State Examination score of <9). The group with severe dementia were more dependent in ADLs and had more neuropsychiatric symptoms (hallucinations and motor disturbances). They were younger and more often cohabitated with the informal caregiver, compared with the group with moderate dementia.Conclusion

This study shows that in the phase preceding institutionalisation the ADL and supervision needs due to progression of dementia appear to tend to be met first and foremost by the informal caregivers. © 2017 Nordic College of Caring Science.

Background: To meet the increasing needs for persons with dementia and their relatives a well-functioning health care system in which resources are used optimally is needed. For this to be achieved requires strategy and planning of synergies between the different cares providers. This study will explore professional caregivers’ and stakeholders’ views of best practice in terms of information, collaboration and communication in dementia care.

Aim: The aim of the study was to explore professional care providers’ and stakeholders' views of best practice in concepts of information, collaboration and communication throughout the trajectory of care from diagnosis to end of life care for persons with dementia in Sweden.

Method: The study had a qualitative approach based on three focus group interviews with a variation among participants regarding professions and workplaces to represent different types of care for persons with dementia from diagnosis to end of life care. The transcribed verbatim was analyzed with qualitative content analysis.

Preliminary results: In early stages primary health care specialized in dementia had close collaboration, training and mentoring, with memory clinic and home care. In the later stages the person with dementia had less frequent contacts with primary health care. Day care played an important role in information delivery of the disease, in collaboration with home and institutional care. In the latest stage the family had an important role as a proxy for the person with dementia about desires in the care.

Conclusion: A well-functioning network in professional care seems to have an impact on persons with dementia to remain at home despite loss of mental and physical functions.

Background: Persons with dementia receive health care and social services from a wide range of professional care providers during the disease trajectory, presenting risks of miscommunication, duplication and/or missed nursing interventions. Accordingly, the aim of this study was to investigate professional care providers' views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden.

Methods: The study had a qualitative design based on three focus group interviews. A strategic sample of 23 professional care providers was included. Data were subjected to content analysis based on the three stages of dementia (early, moderate, end-of-life).

Results: The results were divided into five categories: Diagnosis is a prerequisite for specialized dementia care, Creating routines in the chain of care, Competent staff a prerequisite for high-quality care, Day care facilitates transition in the chain of care and Next-of-kin participation is a prerequisite for continuity in the chain of care. It was clear that, according to the participants, best practice in dementia care in Sweden is not achieved in every respect. It appeared that transitions of care between different organizations are critical events which need to be improved. The further the disease progresses, the less collaboration there seems to be among professional care providers, which is when the next of kin are usually called upon to maintain continuity in the chain of care.

Conclusions: The results indicate that, according to the care providers, best practice in terms of collaboration is achieved to a higher degree during the early stage of dementia compared with the moderate and end-of-life stages. Lack of best practice strategies during these stages makes it difficult to meet the needs of persons with dementia and reduce the burden for next of kin. These are experiences to be taken into account to improve the quality of dementia care. Implementation research is needed to develop strategies for best practice on the basis of national knowledge-based guidelines and to apply these strategies in the moderate and end-of-life stages. ©  Bökberg et al.; licensee BioMed Central Ltd. 2014

Purpose: To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries.

Design: A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare.

Methods: The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia.

Findings: Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries.

Conclusions: The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs.

Clinical Relevance: This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home. © 2015 Sigma Theta Tau International.

Purpose: To describe available and utilized professional care and service at home for people with dementia, from diagnosis to end-of-life stage, in eight European countries. Design: A descriptive cross-country design concerning eight European countries as a part of the European research project, RightTimePlaceCare (RTPC).

Methods: The research team in each country used a mapping system to collect countryspecific information on a general level concerning dementia care and service system. The mapping system consisted of fifty types of care and service activities. Sixteen of the fifty predefined activities concerning professional care and service at home were selected for this study and subdivided into three categories, following the stages of dementia.

Results: Availability was reported to be higher than utilization and the results indicated more similarities than differences among the eight countries involved. Even though there were several available activities of Basic care and services and Health care interventions they were utilized by few in most countries. Furthermore, Specialized care and services for people with dementia were sparsely available and even more sparsely utilized in the participating countries.

Conclusions: The results indicated that people with dementia in Europe received professional care and service on a general, basic level but seldom received care and service adjusted to their specific needs.

Clinical Relevance: This study highlights available and utilized types of care and service activities enabling nurses to develop individually adjusted care plans for people with dementia during the progress of the disease. Knowledge of care and services in other countries provides nurses with an important tool for the improvement of dementia care. However assessing the quality of care requires an indication of informal care provision in different countries.

Background: Two-thirds of nursing home residents suffer from dementia and there is a need for effective and efficient interventions with meaningful outcomes for these individuals. This study aims to identify current best practices in non-pharmacological interventions in nursing homes.

Methods: A systematic literature review was conducted, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) declaration guideline. Studies and Randomized Controlled Trials (RCT) evaluating non-pharmacological interventions focused on improving the Quality of Care (QoC) and/or Quality of Life (QoL) of people with dementia (PwD) living in nursing homes were included. For individual study evaluation, the Cochrane Collaboration risk of bias assessment tool was used.

Results: A total of 31 articles were included and five main categories emerged: psychosocial and educational, physical activity, sensorial therapies, staff-focused interventions and complex interventions. Psychosocial interventions were the most exhaustively studied and evaluated interventions. Few studies related to physical therapy were identified and they did not provide enough evidence of their effectiveness. Therapeutic touch was revealed to have positive effects on residents with dementia.

Conclusion: Psychosocial interventions have been shown to have the potential to improve the QoL and QoC of people with dementia in nursing homes. Before implementation of the intervention, it is recommended that activities are adjusted according to residents' characteristics and external factors controlled to achieve effectiveness and to structure a well-designed intervention. However, there is not enough evidence to support the effectiveness of non-pharmacological interventions in general. Further well-designed research is needed on non-pharmacological interventions in nursing facilities. (C) 2014 Elsevier Masson SAS and European Union Geriatric Medicine Society. All rights reserved.

The aim was to explore the implementation of individual care plans in municipal elderly care in relation to characteristics of staff. Data regarding characteristics of staff were derived through a questionnaire distributed to all staff working in the care for older people, (N = 908, n = 245) in four municipalities in Sweden. The number of care plans established during a one-year period was collected through a contact person in each municipality. In total 47 individual care plans were es-tablished during the study year. Significantly more staff in the municipality that had the most number of established individual care plans agreed that there had been sufficient education (p = 0.017), sufficient time (p = 0.002) and routines established regarding individual care plans (p = 0.014) and had a significantly better job satisfaction (p = 0.001), compared to staff in the other municipalities. Implementation leaders may need to take the working conditions and the percep-tion of available resources among staff into consideration in the on-going process of implementing individual care plans.

Purpose: Digitalization and e-health have potential to generate good quality, equal health, well-being and to develop and strengthen individuals’ resources with the goal of increased independence and participation in society. The implementation of welfare technology requires knowledge of digitalization, as well as an awareness of its meaning in terms of ethical principles and ethical analysis. The purpose of this study was to describe ethical analysis concerning the implementation of welfare technology, in terms of both strategies and tools, within areas of social services in a Swedish municipality.

Method: We followed a working model that focused on increased knowledge and experience in the implementation of welfare technology from an ethical perspective. In the data collection were observations, a questionnaire with open-ended questions and focus group discussions used.

Results: The analysis showed that when welfare technology was introduced and implemented within the area of social services in a municipality, ethical awareness resulting from the conflicts between various interests and values had to be addressed.

Conclusions: The ethical analysis improved implementation of strategies and tools in terms of facts and values, and invisible underlying values to the concept of well-being. © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Objectives: To determine factors associated with the antipsychotic (AP) prescription for people with dementia (PwD) recently admitted to institutional long-term carefacilities (LTCFs) and to ascertain differences in the use of this medication in 8 European countries.

Design: An exploratory cross-sectional study.

Setting: LTCFs from 8 European countries (Estonia, Finland, France, Germany, The Netherlands, Spain, Sweden, and England).

Participants: A total of 791 PwD recently admitted to an LTCF and their caregivers.

Measurements: Baseline data from RightTimePlaceCare survey was used. Patients' medical conditions, neuropsychiatric symptoms, physical and cognitive status, and medications were recorded. Multiple logistic regression models were used to assess associations with the AP use. 

Results: A group of 296 patients (37.4%) of 791 patients recently admitted received AP medication. The prevalence of the use of 1 or more APs varied between study countries, ranging from 12% in Sweden to 54% inSpain. Factors independently associated with the AP use were living in Sweden [odds ratio (OR) 0.12, 95% confidence interval (CI) 0.05-0.30], Finland (OR 0.26, 95% CI 0.14-0.48), Germany (OR 2.75, 95% CI 1.55-4.86) and Estonia (OR 6.79, 95% CI 3.84-12.0). The odds of AP use decreased with the presence of a dementia specific unit inthe LTCF (OR 0.60, 95% CI 0.39-0.92), but was higher among residents with a hyperactivity behavior (OR 2.12, 95% CI 1.41-3.18).

Conclusion: The current study shows that more than one-third of the residents recently admitted received APs and that prescription frequency across countries varied significantly. This study raises the possibility that the presence of a dementia-specific unit might play a role in the AP use. Further studies should investigate this association and seek better understanding of what will achieve optimal quality of AP use among newly admitted residents in LTCF. © 2014 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

PURPOSE: Many municipalities today, together with other stakeholders, offer group exercises for the older population via municipal meeting places, focusing on promoting good health. During the Covid-19 pandemic, these group exercises either continued in a modified form or ceased. The aim of this study was to explore involved stakeholders' experiences of group exercises for older persons arranged via municipal meeting places during the Covid-19 pandemic. METHODS: Six online focus group interviews were conducted with 25 stakeholders, such as decision-makers and representatives from the non-profit sector, from seven municipalities in Sweden. Data were analysed using thematic analysis. FINDINGS: The collaboration around the group exercises was challenged due to affected communication and decision-making. The stakeholders described the importance of adapting and finding new ways to offer group exercise. Furthermore, the re-arranging of group exercises created concerns about the well-being of the older persons but also happiness with the older persons ability to act for their own well-being during the pandemic. CONCLUSIONS: This study highlights the importance of the municipalities exchanging experiences, making the older persons more involved in the decision-making process, enabling a person-centred encounter with the older persons when exercising in groups, and strengthening supportive environments by sharing the ownership of arranging the group exercises with the older persons.

A didactive method which promote a more active student participation (ASP), Virtual Patient (VP) cases  may be a valuable intervention. VP cases are defined as interactive computer simulations of real-life clinical scenarios for healthcare education. VP cases are excellent for training clinical reasoning skills.

The aim of the study was to investigate utilization of VP cases for ASP in nursing education, regarding student’s learning experience.

The design was an intervention study, 58 students in the third semester of six in the nursing program were included in the study. In 2016-2017, interventions have been conducted in the Human Biomedicine course with the purpose to develop a course concept that included didactic methods that promoted ASP. The students performed four VP cases individually at home. Before solving  the VP cases, the students had lectures in medicine science for example concerning chest organs diseases. In order to be a complement to that lecture the VP case was about chronic obstructive pulmonary disease. The lectures were followed up with seminars where the students were able to ask questions regarding conducted VP cases. After each performed VP case, the student answered a self -evaluation form with open ended questions.  Data was conducted using content analysis.

The result showed that the students found the VP cases challenging and motivational. The VPs taught them to think wide and stimulated to search for more knowledge. Finally they thought it was a good way to test themselves and appreciated the direct feedback, lack of knowledge became visible at once. © 2018 OMICS International

Virtual Patient cases (VP cases) promote learning, teaching, and assessment of clinical reasoning and can stimulate and motivate active learning experiences in nursing education. The aim of the study was to investigate the use of VP cases for active student participation in nursing education regarding students’ learning experiences of clinical reasoning. After an intervention using VP cases in the graduate nursing program, 174 evaluation questionnaires were collected from the students. The questionnaire consisted of open-ended questions that covered students’ learning experiences using VP cases. Deductive content analysis was used with a focus on the students’ learning experiences. The results showed that the use of the VP cases provided a comprehensive view of the patient and encouraged the students to broaden their thinking and helped them in drawing conclusions and in structuring their problem-solving. The VP cases also stimulated their learning process and reflection. Their knowledge was challenged, and this motivated them to search for more knowledge that was then followed up in the VP cases. The students found that the VP cases provided support in translating theoretical knowledge into clinical reasoning, and they facilitated the application of theory in practice and encouraged the students to use their clinical reasoning. The VP cases allowed for self-evaluation, which was a motivating force and increased their awareness of their abilities for clinical reasoning. Learning experiences from VP cases seem to be applicable in higher education and seem especially useful in enabling nursing students to apply theory in their clinical practice. Experiential learning theory supports the learning experiences from VP cases in clinical reasoning. In addition, working with VP cases seems to promote active student participation. Copyright © 2019 by author(s) and Scientific Research Publishing Inc.

Background: Performing basic activities of daily living (ADLs) is one of the major difficulties encountered in dementia, which can have considerable negative impacts on the quality of life (QoL) of people with dementia (PwD). However, the extent to which basic ADL performance deteriorates across mild, moderate, and severe dementia is little examined and its impact, together with depression and neuropsychiatric behavior, upon QoL, is of considerable relevance across European countries.

Methods: Data were drawn from people living in the community who were participants in a large-scale European study on transition from community living to care homes of PwD. PwD completed measures on cognitive functioning and QoL, and informal carers reported upon QoL, depressive symptomatology, psychopathology, and functional ability of the PwD.

Results: ADL performance deteriorated differently for each activity. In particular, toileting, transfer, and feeding remained relatively intact throughout, whereas performance on bathing and dressing deteriorated to a greater extent from mild to severe dementia. It appears that continence was not affected by the stage of dementia with similar levels of impairment. Basic ADL performance impacted to different degrees on QoL across dementia stages and countries.

Conclusions: Interventions aimed at maintaining independence or QoL need to target different ADLs across different dementia stages and perhaps also tailor interventions to the context of different countries. Findings contribute to the development of non-pharmaceutical interventions and governmental pledges to promote independence in dementia. © International Psychogeriatric Association 2014

Purpose: Parkinson’s disease (PD) is associated with motor and non-motor symptoms that negatively influence the person’s quality of life. To reduce illness and increase quality of life, alternative treatments of PD such as dance might be experienced as beneficial. The aim of this study was to explore experiences of how a dance program in Sweden influences perceived physical, social, and emotional wellbeing in persons with PD. Method: A qualitative method with semi-structured interviews and content analysis was used, and 10 participants with variations in age, gender, and how long they had been diagnosed with the disease were interviewed. Results: The results showed that dancing was experienced as improving health, which implied feeling both calmed and excited, getting better sleep, and being able to move with more focus and freedom. The dance program was experienced as a social context through the importance of community, feelings of togetherness, and being able to compare oneself with others. Experiences of self-support included experiencing increased self-esteem and joy, but also a sense of being confirmed and having structure, which gave meaning to everyday life. Conclusions: To reduce illness and increase quality of life in persons with PD, it is important to investigate alternative treatment methods, and this study shows the importance of participating in a dance program in Sweden for the life situation and health of people with PD. © 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Introduction: Exploring the care and service activities offered throughout the trajectory of dementia is an opportunity for countries to learn from each other. As part of the RightTimePlaceCare project’s general objective to develop best practice strategies this presentation describes development, content and application of a template to explore the dementia health, social care and welfare systems from early sign, diagnosis, intermediate and moderate stage and to the late stage of the disease. It also describes some of the findings with regard to the chain of care and service for people with dementia.

Method: A step-wise consensus procedure was applied to identify, define and develop a template covering care and service throughout the disease trajectory. In addition the professionals involved were identified and defined as for their educational level.

Results: In total 50 care and service activities compiled in seven groups were identified: 1) Screening, diagnostic procedure, treatment of dementia and complications; 2) Outpatient care facilities; 3) Care at home; 4) Institutional care; 5) Palliative care; 6) Informal caregiving and support; 7) Civic activities. The largest differences in terms of availability were found for care activities specifically for people with dementia. Non-pharmacological treatment was not commonly utilized in whilst pharmacological treatment for BPSD was common. Also education and social support to family caregivers was sparsely utilized.

Conclusion: The care and service offered to people with dementia and family caregivers covers a wide range of activities. Facilities specifically for dementia varies among countries.There are more similarities among countries than differences.

The RTPC project also concerns the structure of long-term home and institutional care throughout the trajectory of dementia. To describe and analyse the European health, social care and welfare systems, advocacy and informal caregiver support systems for patients/consumers with dementia a template has been developed for the use of homogenous terminology, covering possible care and service interventions from diagnosis to end of life. The structure of the national health care and social service system was described as related to elderly in general and to people with dementia specifically. The system differs between the eight countries in particular in terms of the demands on informal caregivers, financially, the distribution and the emphasis on home care versus nursing home care. Resembling findings throughout the 8 countries were that few had a diagnosis at early disease stage, support to family caregivers still can be improved and palliative care concepts are sparsely applied.

The aim of this part of the RightTimePlaceCare study (WP2) was to describe and analyse the European health, social care and welfare systems, advocacy and informal caregiver support systems for patients with dementia. The description and analyses covers the continuum of care from diagnosis, informal care, contributions from civic society, public home care and the intermediate forms of care, to the long-term institutionalised care, and end of life care. In a first step, the terminology was developed and meanings of different terms used in relation to dementia care were collected, analysed, defined and categorised. Thereafter the terminology was used to develop a template organised on the Y-axis as being the course of the dementia disease as described by the OECD in 2004, and on the X-axis as being the type of care provided, organised in accordance with the process of the disease from dementia screening to end of life care. In addition each country was asked to provide an overall description of the care system they offered with regard to the national directives and financing of their dementia care system. The primary source of information was written reports from different sources. Official documents, epidemiological studies and descriptions of the care system, in particular dementia care system offered in their country. In addition interviews with responsible managers, providers or the equivalent in relevant care and service organisations, with persons in consumer/user organisations, with staff, professional employees and purchasers in a municipality or another representative for a civic administrative area were recommended.

Knowledge concerning professionals involved in dementia care throughout its trajectory is sparse; the focus has mainly been on nursing-homecare and less on home care, diagnosis and treatment of the disease and its complications despite the fact that home care is the most prominent type of care. The aim of this study was to explore and describe professional care providers involved in dementia care and their educational level applying the International Standard Classification of Education (ISCED) and further to investigate practice in the RightTimePlaceCare-countrieswith regard to screening, diagnostic procedures and treatment of dementia and home care. The findings demonstrate more similarities than differences in terms of type of professionals involved among the countries although untrained staff were more common in some countries. Findings also show that many types of professionals are involved, who to turn to may not be clear, for instance in terms of medical specialities and it may be unclear who bears the ultimate responsibility. The professionals involved in diagnosis, treatment and care are educated to bachelor's level or above whilst everyday care is provided by people trained at a lower ISCED level or with no formal training. Registered nurses as well as occupational therapists have bachelor's degrees in most countries, but not in Germany or Estonia. Professionals specifically trained in dementia care are not so common. Further research is needed to reveal not only who provides the diagnostics and treatment, but also how home care is organised and quality assured. Many different types of professionals serve as providers along the trajectory of the disease which may be difficult for the patient and the informal caregiver to cope with. © The Author(s) 2014

Purpose: There is a knowledge gap with regard to the structure of the care and service system available to persons with dementia. This is very much a concern for nurses who are the main providers in the care of dementia. The study, a part of the "RightTimePlaceCare" project, describes the development and content of a mapping system aimed at exploring the content of care and service for persons with dementia and their informal caregiver throughout the disease trajectory. The usefulness of the mapping system is illustrated in describing the availability of care and service at the diagnostic stage, and at the institutional and palliative stages.

Design: A descriptive cross-country design concerning eight European countries differing in demographic composition and terms of long-term care provided is employed.

Methods: A modified consensus strategy was used to develop the mapping system and define the terminology. Thereafter, each country ' s mapping systemwas completed by its research group collecting country-specific information and using expert groups either as consultants or for completing the system.

Findings: The consensus procedure worked satisfactorily with regard to content and definitions, whereas assessing the availability and utilization of care and service was problematic. Some 50 types care and service activities were identified and defined and were categorized as follows: (a) screening, diagnostic procedures, and treatment of dementia; (b) outpatient care facilities; (c) care at home; (d) institutional care; (e) palliative care; (f) informal caregiving and supportive actions; and (g) civic activities. Care at home included the broadest range of activities; palliative care, informal caregiving, and supportive actions were the smallest range.

Conclusions: The dementia care systems were found to be comprehensive and to emphasize home care. Activities aimed at transferring knowledge to informal caregivers, though highly important for home care, seemed less extensive. The mapping system appears useful from a nurse manager's standpoint for exploring the dementia care pathway. Comparisons between countries appear useful for developing the care system and for sharing information of how toperfect it. Further testing and development are needed regarding information on the availability and utilization of care and service activities.

Clinical Relevance: The mapping system can be useful in clarifying the dementia care system for those concerned, in helping nurse researchers and managers review and initiate evaluation and communicate with policy makers, as well as to ensure that providers use appropriate parts of the system. It can also be useful in national and international comparative studies. © 2013 Sigma Theta Tau International.

Purpose: The aim of this study was to investigate people’s experiences of living with dysphagia after stroke, and their experiences of dysphagia management.

Methods: The study design was qualitative, and an open-ended approach to data collection was used, with follow-up probing questions to gain more information as needed. Personal interviews were conducted with five persons who had persisting moderate to severe dysphagia after stroke, living in the south-west part of Sweden. The data were analysed with qualitative content analysis.

Results: When analysing the data, the following theme emerged; “Dysphagia impacts life situations negatively and requires individually adapted, long term support from skilled health care professionals”. The theme consists of three categories: “Learning to manage dysphagia and its complications”, “Professional support with dysphagia varies” and “Finding small moments of joy despite large restrictions in life situations”.

Conclusions: Findings indicated that people with dysphagia experienced a lack of support from health care professionals. Better health care support following discharge from hospital is required to ensure an optimal quality of life. Actions to achieve this may include developing national guidelines for adequate dysphagia follow-up and establishing multidisciplinary dysphagia teams in hospitals and long-term care facilities.

Background: Insomnia is common among frail older people living in nursing homes, and many are often prescribed medication. However, it may be beneficial to consider using a weighted blanket as an alternative intervention. 

Aim: The aim of the study was to explore how frail older people with insomnia experience the use of a weighted blanket when living in nursing homes. 

Methods: The study was conducted in nine nursing homes in five municipalities in the southwest of Sweden. Nineteen people were included aged 67 and older, four men and 15 women. The study had an inductive qualitative design. The semi-structured interviews were analysed with qualitative content analysis. 

Results: The results formed four categories: Experiencing proximity which raised older people's experiences of the weighted blankets' proximity that gave a sense of comfort or discomfort. Experiencing changes in sleeping patterns, raised older people's experiences of the weighted blanket influence in change sleep patterns. Experiencing conditions for use, frail older people experienced the right conditions surrounding and handling the weighted blanket. Experiencing stimulating senses: frail older people experience changes in their senses of worry, anxiety, and pain., 

Conclusions: Frail older people experience that weighted blankets can provide comfort, positively influence sleep patterns, and reduce anxiety. This intervention can be considered valuable and offers a possible alternative to medication for frail older people with insomnia. 

Purpose

The most common treatment for resident’s health problems is pharmacological. Little research has been done on how an intervention with a non-pharmacological method, such as a weighted blanket, Through the nursing staff view, we can learn how weighted blankets influence resident’s health in nursing homes. The aim of this study was to explore nursing staff’s experiences of how an intervention with weighted blankets influenced resident’s expressions of health.

Methods

The study had a descriptive qualitative design with semi-structured interviews with 20 nursing staff working in nursing homes, and an inductive content analysis was applied.

Results

The nursing staff expressed that the weighted blanket positively influenced resident’s health in the areas of sleep, physical activity, and psychological behaviour. The weighted blanket made them fall asleep faster, sleep was uninterrupted andthey felt more rested in the morning. The nursing staff observed an increased level of activity as the resident became more energetic . The nursing staff also experienced reduced negative psychological behaviours like anxiety and worrying.

Conclusion

This study indicated that the weighted blanket changed the health expression of resident in several crucial areas. Deep pressure treatment indicates an alternative health-improved treatment for resident in nursing homes. © 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Background: An increasingly aging population is a global phenomenon. While considered a positive step forward, vulnerability to age-related health problems increases along with the ageing population. The aim of the study was to investigate weighted blankets’ effect on health regarding quality of life (QoL), sleep, nutrition, cognition, activities of daily living ADL and medication in older people living in nursing homes. Methods: In total, 110 older people were involved in an intervention with weighted blankets, and 68 older people completed the intervention. Measures before and after were performed regarding quality of life; QoL-AD, EQ-VAS, sleep; MISS, nutrition; MNA, cognition; S -MMSE (ADL) and medication. Comparative statistical analyses were applied. Results: After intervention with weighted blankets, health in general, such as QoL, improved. Sleep also improved significantly, especially with respect to waking up during the night. Nutrition was enhanced, health as a cognitive ability improved, and medication in the psychoanaleptic group decreased. The effect size varied between small and large. Conclusions: A weighted blanket seems to be an effective and safe intervention for older people in nursing homes, as several improvements were made regarding the health of older people. © 2022 by the authors.

Purpose: Being of working age while at the same time needing to help a partner with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this particular group of spouses. The aim of the study was to explore spouses’ everyday experiences when living with a person with young onset dementia. Method: The study had a descriptive qualitative design with semi-structured interviews with nine spouses. The interviews were analysed using content analysis. Result: The interviewed spouses experienced emotions that varied from feelings of loneliness, frustration, and worry to peace of mind. They said that they used coping strategies, which included adopting a positive mindset, adapting to inabilities, adopting an avoidant approach, and finding ways to recharge. Spouses also felt that they could use more support, both formal and informal. Conclusion: The spouse of a person with young onset dementia has a range of emotional experiences and has resourceful ways of handling everyday life. Various types of support are offered to spouses, however, they seemed to desire more from health care services. © 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Objectives: To investigate the ability of the ADL-staircase to predict mortality among older people receiving long-term formal health care and service.

Method: This study comprises 626 respondents. Data were collected for 2 cohorts.

Results: Crude mortality rate ranged between 9% and 23%. Higher scores on the ADL-staircase significantly increased the risk of mortality (RR = 1.253). For the total sample, Youden's index suggested a cutoff value of 6 for mortality on the ADL-staircase. A cutoff value of 4 was suggested for those living at home and 7 for those in special accommodation. Regression analysis, using these cutoff values, showed a significant association with mortality.

Conclusion: Knowledge of how to use the ADL-staircase as a mortality predictor is limited. This study not only found a cutoff point for the total sample but also when grouped by type of housing. The findings may be useful when allocating care and service and when providing preventive interventions and palliative care. © 2011 Informa Healthcare USA, Inc.

Aim: To explore district nurses' experiences of information received from the employer and communicated to patients in the context of the pandemic A(H1N1).

Background: Dissemination of oral and written information in pandemics is essential to limit the spread of infection and public concern. Information is channeled via various authorities and health care centers, where district nurses often provide information directly to patients.

Method: Transcribed semi structured interviews with 21 district nurses in Region Skåne were analyzed using qualitative content analysis.

Results: The district nurses experienced shortfalls in the information communicated from the employer and that the relevant information was often preceded by public media. This made it problematic to provide information concerning pandemic A(H1N1) in a professional manner, as well as to mediate safety and credibility. During the pandemic the district nurses simultaneously sought information from websites, popular science magazines and other public media. The nurses did however express an understanding of the difficulty in this unique situation and have a positive outlook on the use of the intranet for dissemination of information.

Conclusion: It is important that district nurses receive prompt and precise information from their employer in a pandemic to facilitate the patients' information needs in credible manner. 

Aim To investigate persons with dementia and their informal caregivers’ views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.

Background: Living with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements.

Design Qualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden.

Methods Persons with dementia (N=137) and their informal caregivers participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested.

Results The core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organisation to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important.

Conclusion As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organisation to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver.

The aim was to investigate care consumption in County Council, municipalities and informal care for people 65+, make comparisons between age groups and housing. Data was drawn from elderly in the southern part of Sweden (n=1958). Data were collected regarding demography, extent of professional care in municipalities and County Council, and informal care.

49 % got care in special accommodation (SA) and the remaining at home (AH). More (p<0.006) of the oldest had help in PADL from home service care than the youngest elderly, 66 % and 34 % respectively. Less (p<0.007) home nursing care could be seen by the oldest (9.6 visits/month) compared to the youngest elderly (15.7 visits/month). In out-patient care by physician had 65 % of the youngest elderly contact with primary health care (PHC) compared to 74 % for the age groups 75 and above (p<0.004). The oldest had less number of contacts with psychiatry (1 %) and specialist care (SC) (55 %) compared to age group 75-84, 3 % and 62 % respectively (p<0.001 and p<0.006 respectively). More (p<0.001) elderly in SA (81 %) had contact with PHC by physician, compared to elderly AH (66 %). Outpatient SC (p<0.001) and hospital care (number of episodes p<0.001 and days p<0.002) were more frequent among elderly living AH in contrast to SA.

Elderly is not a homogenous group with regard to care consumption. The youngest elderly and those living AH consumed more of specialised care while the oldest and those living in SA consumed more of PHC.

The overall aim was to describe and compare functional ability and health complaints of older people receiving municipal care in relation to housing and informal care, and factors associated with medical health care, municipal care and informal care. Further, the aim was to investigate agreement in needs assessments between personnel and older people and to investigate care satisfaction and health-related quality of life among older people receiving municipal care and services. Study I and II included 1958 persons aged 65 years and above, who were assessed for functional ability, health complaints, and level of informal and municipal care and service. Study II in addition included data from a register including medical health care. In study III (n=152), standardised needs assessments were performed by the staff. Later, the older person’s view was collected in a personal interview concerning functional ability, health complaints, public and informal care. In addition (Study IV, n=166), SF-12 was used for measuring health-related quality of life and for measuring care satisfaction. Cohabitation was a predictor of a combination of municipal and informal care at home (OR: 5.935), while assistance with Instrumental Activities of Daily Living (IADL) provided by municipal home care and services predicted municipal care only (OR: 0.344). Care in special accommodation was predicted by advanced age (OR: 1.051), dependency in IADL (OR: 19.883), Personal Activities of Daily Living (PADL) (OR: 02.695), and impaired cognitive ability (OR: 3.849) with receiving municipal care only as a reference. Living alone (OR: 0.106), dependency in IADL (OR: 11.348) and PADL (OR: 2.506), impaired cognitive ability (OR: 3.448), impaired vision or blindness (OR: 1.812) and the absence of slowly healing wounds (OR: 0.407) were predictors of special accommodation with a combination of informal and municipal care at home as a reference. 35% of those with public care at home were admitted to hospital and 76% had contact with outpatient care by physician compared to 26% and 87% respectively of those in special accommodation. Living in special accommodation was associated with more contacts with primary health care (B=0.643) and fewer contacts with specialist care (B=-0.722). Informal care was associated with more contacts with primary health care (B=0.413), specialist care (B=0.787), admissions to (B=0.265) and days in hospital (B=1.573). Agreement for dependency in IADL and PADL varied between good (κ=0.78) and moderate (κ=0.43). Poor agreement was found for dizziness (κw=0.17) and fair agreement for impaired hearing, urinary incontinence, pain, anxiety and depressed mood (κw between 0.21 and 0.37). Older persons reported more health complaints than were found in the personnel’s assessments, although significantly lower estimation was found only for incontinence and vision. Agreement for provided public care at home was poor, while for informal care it varied between very good and moderate. Low care satisfaction was associated with dependency in IADL (B=-1.338 and B=-1.630), impaired mobility (B=-12.579), blindness (B=-26.143), faeces incontinence (B=-11.898 and B=-17.529) and anxiety (B=-6.105 and B=-27.197), while high care satisfaction was associated with dependency in PADL (B=2.109) and receiving informal care with IADL from spouse (B=8.738). In special accommodation, low care satisfaction had to do with continuity, timing, the staff’s personal characteristics and with their ability to give service. At home, the older people were the least satisfied with the staff’s ability to do housework and to give medical care, with the staff’s amount of time and with their own influence over their care.

Objectives: To investigate persons with dementia and their informal caregivers’ views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries

Methods: 137 persons with dementia and their informal caregivers participated in focus group interviews. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers.

Results: The core nding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organisation to contact. Professional knowledge and commitment, variation in service, and care adapted to needs were important.

Conclusion: As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a speci c person or organisation to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver. 

Aim: To investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.

Background: Living with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements.

Design: Qualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden.

Methods: Persons with dementia and their informal caregivers (N = 137) participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested.

Results: The core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organization to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important.

Conclusion: As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organization to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver. © 2014 John Wiley & Sons Ltd.

Background: Quality of life in persons with dementia is, in large part, dependent on the quality of care they receive. Investigating both subjective and objective aspects of quality of care may reveal areas for improvement regarding their care, which information may ultimately enable persons with dementia to remain living in their own homes while maintaining quality of life. The aim of this study was threefold. Firstly, we wanted to describe self-reported quality of life in persons with dementia at risk of nursing home admission. Secondly, the aim was to describe subjective and objective aspects of quality of care. The third aim was to investigate the significance of quality of care for quality of life in persons with dementia at risk of nursing home admission.

Methods: A cross-sectional interview study design was used, based on questionnaires about quality of life in persons with dementia and different aspects of quality of care. The participants were 177 persons with dementia at risk of nursing home admission. Descriptive and comparative statistics were used to analyse the data.

Results: Persons with pain showed significantly lower quality of life in the dimensions behavioural competence (p=0.026) and psychological wellbeing (p=0.006) compared with those without pain. Satisfaction with received care seemed to have a positive effect on quality of life. The overall quality of life was perceived high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Furthermore, 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling.

Conclusion: This study indicates need for improvements in home health care and social services for persons with dementia at risk for nursing home admission. Registered nurses are responsible for nursing interventions related to pain, patient safety, skin care, prevention of accidents, and malnutrition. Therefore, it is of great importance for nurses to have knowledge about areas that can be improved to be able to tailor interventions and thereby improve quality of care outcomes such as quality of life in persons with dementia living at home.

INTRODUCTION: The fragmentation of responsibilities in the chain of care may result in information lost, duplications and discontinuity. This may in turn lead to consequences for the person with dementia dealing with unmet care needs.

AIM: The aim of the study was to explore professional care providers’ and stakeholders' views of best practice and needs of improvement of information, collaboration and communication in the chain of care for persons with dementia in Sweden.

METHOD: The study was carried out with an explorative qualitative design based on three focus group interviews. The text was analysed with qualitative content analysis.

RESULTS: The participants’ views of best practices and needs of improvement resulted in six themes following the trajectory of dementia. “Dementia diagnosis significant for receiving care”, “Day care for person with dementia supportive to home care”, “Collaboration between staff important for information delivery”, “Skilled staff for person-centred care”, “The life story of the person with dementia important source of information”,  and “Relatives participation for continuity in the chain of care”.

CONCLUSION: A well-functioning network between different professional care providers seems to have an impact on best practice in the chain of care for persons with dementia so they could remain at home despite loss of mental and physical functions.

Objective: The aim of the study was to investigate the level of agreement between the needs assessment made by professional on the one hand, and the older person's views on the other. A further aim was to explore if the estimations made by the professional were systematically lower or higher compared to the views of the older person.

Participants: The study included 152 individuals, 65+, who received public care and services in southern Sweden. The concept public care and services include home help, home nursing care, rehabilitation and special accommodation.

Methods: Standardised needs assessments were performed by home help officers, registered nurses and one physiotherapist. Subsequently to the needs assessment, the older person's view was collected in a personal interview. Standardised assessment form was used covering items about demographic data, functional ability, health complaints, adaptation in housing, public and informal care. The concept informal care includes care from spouse and children. Cohen's Kappa was used for analysis of level ofagreement. and Chi-square tests for differences in estimation.

Results: Level of agreement for dependency in instrumental activities of daily living (IADL) and personal activities of daily living (PADL) varied between good (kappa = 0.78) and moderate (kappa = 0.43). Poor agreement was found for occurrence of dizziness (kappa(w) = 0.17) and fair agreement for impaired hearing (kappa(w) = 0.27), urinary incontinence (kappa(w) = 0.38), pain (kappa(w) = 0.21), anxiety (kappa(w) = 0.37) and depressed mood (kappa(w) = 0.37). Older persons reported more health complaints than in the professional's assessments, significantly lower estimation was found for incontinence and vision. Level of agreement for provided public care at home (home help and home nursing care) was poor, for informal care it varied between very good and moderate.

Conclusions: Needs assessments appeared to focus on older persons ADL, cognition anti informal care, while health complaints and social needs were less in focus. A more comprehensive view including preventive and palliative approach may improve quality of life for older persons receiving care and service. (C) 2010 Elsevier Ltd. All rights reserved.