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AIMS: To describe and compare perceptions of collaboration between care providers on the part of three groups of Registered Nurses working in municipal care and having particular responsibility concerning the care of frail older people with intellectual disability (ID); and, furthermore, to investigate the presence of and compliance with guidelines for the coordination of care. DESIGN: National survey study with cross-sectional design. METHODS: Nurses (N = 110) with key positions concerning people with ID answered a national questionnaire about collaboration, guidelines and coordinated individual plans. Descriptive and comparative statistical analyses were applied. RESULTS: The meetings on cooperation and coordination of interventions were attended most frequently by nurses, and least frequently by social workers. The nurses were overall satisfied with the collaboration but perceived shortcomings in the case of inpatient and outpatient psychiatric care. Only in about half of the meetings for making care plans participated the people with intellectual disability and next of kin.

BACKGROUND: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. METHODS: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. RESULTS: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. CONCLUSION: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. TRIAL REGISTRATION: Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016.

Aim: To assess the quality of life in frail older persons (65+ years) living in nursing homes and to examine differences between quality of life perceptions among different gender and age groups. Design: Cross-sectional. Methods: Data were collected during 2015-2017 based on two questionnaires (WHOQOL-OLD and WHOQOL-BREF). Seventy-eight older persons living in nursing homes in southern Sweden answered the questionnaires in structured interviews. Descriptive and comparative statistics were used to analyse the data. The study was guided by Transparent Reporting of Evaluations with Nonrandomized Designs (TREND) guidelines. Results: The frail older persons reported low autonomy related to few opportunities to engage in everyday activities and were unable to do the things they liked to do and not feeling in control of their future. Another important result was that frail older persons seemed to have no or little fear of death and dying. No significant differences between gender or age on quality of life were revealed.

Aim To evaluate person-centeredness in nursing homes from the perspective of frail older persons, before and after implementing an educational intervention about palliative care. Design A crossover design. Methods Forty-four older persons living in nursing homes were interviewed. A convergent mixed-method was used to analyse data. Results The older persons expressed feelings of unsafety related to shortcomings in staff. These shortcomings implied that the responsibilities of everyday activities and making the residents' existence more bearable were transferred to the next of kin. The dropout rate related to death and not enough energy was considerably high (51%) even though one of the inclusion criteria was to have enough energy to manage a 1-hr interview. This result supports previous research describing the difficulties in retaining older persons in research and indicated that the dose of the intervention was not sufficient to improve person-centred care.

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., The study was a part of the RightTimePlaceCare project supported by a grant from the European Commission within the 7th Framework Programme (project 242153). We would like to acknowledge the support from the Gyllenstierna Krapperup's Foundation. We would also like to acknowledge the support of the Department of Health Sciences, Lund University, Lund, Sweden. This study was accomplished while Christina Bökberg was affiliated with the Swedish National Graduate School for Competitive Science on Ageing and Health (SWEAH), which is funded by the Swedish Research Council., RightTimePlaceCare

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, RightTimePlaceCare

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

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

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.

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., Award for 4th best poster, RightTimePlaceCare (the EU 7th Framework Programme for Research, contract number 242153)

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.