| 1. |
- Beerens, Hanneke C., et al.
(författare)
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Change in quality of life of people with dementia recently admitted to long-term care facilities
- 2015
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1435-1447
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Tidskriftsartikel (refereegranskat)abstract
- AimTo assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. BackgroundMany people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. DesignAn observational and longitudinal survey. MethodsData on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. ResultsBetter cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. ConclusionCognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization.
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| 2. |
- Borgehammar, Stephan, et al.
(författare)
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Vitae Birgittae : en översikt och tre editioner
- 2017
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Ingår i: Humanitas : Festskrift till Arne Jönsson - Festskrift till Arne Jönsson. - 9789170612442 ; , s. 177-200
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- A survey of the Latin Lives of St Birgitta of Sweden, with an edition of a brief life found in an English ms. and another found in two Italian mss., both previously unedited. Also a re-edition of the Life found in the first edition of St Birgitta's Revelations, published in 1492.
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| 3. |
- Broda, Anja, et al.
(författare)
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Perspectives of policy and political decision makers on access to formal dementia care : expert interviews in eight European countries
- 2017
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers.METHODS: Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries.RESULTS: The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness.CONCLUSIONS: Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.
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| 4. |
- Bökberg, Christina, et al.
(författare)
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Care and Service at Home for People With Dementia in Europe
- 2015
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Ingår i: Abstractbook Nordic Conference on Advances in Health Care Sciences Research. ; , s. 22-22
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 5. |
- Bökberg, Christina, et al.
(författare)
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Care and Service at Home for Persons With Dementia in Europe
- 2015
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Ingår i: Journal of Nursing Scholarship. - Hoboken : Wiley-Blackwell Publishing Inc.. - 1527-6546 .- 1547-5069. ; 47:5, s. 407-416
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Costa, Nadège, et al.
(författare)
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Costs of Care of Agitation Associated With Dementia in 8 European Countries : Results From the RightTimePlaceCare Study
- 2018
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Ingår i: Journal of the American Medical Directors Association. - : Elsevier BV. - 1525-8610 .- 1538-9375. ; 19:1, s. 1-95
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Tidskriftsartikel (refereegranskat)abstract
- Objective To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries. Design Cross-sectional data from the RightTimePlaceCare cohort. Setting HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England). Participants A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers. Main Outcome Measures Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q). Results Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P =.01 and.02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P <.05). Conclusion This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.
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| 7. |
- Handels, Ron L. H., et al.
(författare)
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Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study
- 2018
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Ingår i: Journal of Alzheimer's Disease. - 1387-2877 .- 1875-8908. ; 66:3, s. 1027-1040
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Tidskriftsartikel (refereegranskat)abstract
- Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately (sic)17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.
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| 8. |
- Joshi, Peter K, et al.
(författare)
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Directional dominance on stature and cognition in diverse human populations
- 2015
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Ingår i: Nature. - : Springer Science and Business Media LLC. - 0028-0836 .- 1476-4687. ; 523:7561, s. 459-462
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Tidskriftsartikel (refereegranskat)abstract
- Homozygosity has long been associated with rare, often devastating, Mendelian disorders, and Darwin was one of the first to recognize that inbreeding reduces evolutionary fitness. However, the effect of the more distant parental relatedness that is common in modern human populations is less well understood. Genomic data now allow us to investigate the effects of homozygosity on traits of public health importance by observing contiguous homozygous segments (runs of homozygosity), which are inferred to be homozygous along their complete length. Given the low levels of genome-wide homozygosity prevalent in most human populations, information is required on very large numbers of people to provide sufficient power. Here we use runs of homozygosity to study 16 health-related quantitative traits in 354,224 individuals from 102 cohorts, and find statistically significant associations between summed runs of homozygosity and four complex traits: height, forced expiratory lung volume in one second, general cognitive ability and educational attainment (P < 1 × 10(-300), 2.1 × 10(-6), 2.5 × 10(-10) and 1.8 × 10(-10), respectively). In each case, increased homozygosity was associated with decreased trait value, equivalent to the offspring of first cousins being 1.2 cm shorter and having 10 months' less education. Similar effect sizes were found across four continental groups and populations with different degrees of genome-wide homozygosity, providing evidence that homozygosity, rather than confounding, directly contributes to phenotypic variance. Contrary to earlier reports in substantially smaller samples, no evidence was seen of an influence of genome-wide homozygosity on blood pressure and low density lipoprotein cholesterol, or ten other cardio-metabolic traits. Since directional dominance is predicted for traits under directional evolutionary selection, this study provides evidence that increased stature and cognitive function have been positively selected in human evolution, whereas many important risk factors for late-onset complex diseases may not have been.
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| 9. |
- Karlsson, Staffan, 1959-, et al.
(författare)
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Dementia care in eight European countries from the perspective of recipients and their caregivers
- 2015
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Ingår i: Abstract Booklet. ; , s. 318-318
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Konferensbidrag (refereegranskat)abstract
- 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 countriesMethods: 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.
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| 10. |
- Karlsson, Staffan, 1959-, et al.
(författare)
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Dementia care in European countries, from the perspective of people with dementia and their caregivers
- 2015
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Ingår i: Journal of Advanced Nursing. - Chichester : Wiley-Blackwell Publishing Inc.. - 0309-2402 .- 1365-2648. ; 71:6, s. 1405-1416
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 11. |
- Kehoe, Laura, et al.
(författare)
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Make EU trade with Brazil sustainable
- 2019
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Ingår i: Science. - : American Association for the Advancement of Science (AAAS). - 0036-8075 .- 1095-9203. ; 364:6438, s. 341-
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 12. |
- Kerpershoek, Liselot, et al.
(författare)
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Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice
- 2018
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Ingår i: Aging & Mental Health. - : ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD. - 1360-7863 .- 1364-6915. ; 22:7, s. 897-902
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL.The perspectives of people with dementia are informative when identifying needs.
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| 13. |
- Kerpershoek, Liselot, et al.
(författare)
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Optimizing access to and use of formal dementia care : Qualitative findings from the European Actifcare study
- 2019
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Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 27:5, s. e814-e823
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Tidskriftsartikel (refereegranskat)abstract
- This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.
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| 14. |
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| 15. |
- Lethin, Connie, et al.
(författare)
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Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study
- 2016
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Ingår i: BMC Geriatrics. - London : Springer Science and Business Media LLC. - 1471-2318. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (>= 65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. Methods: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. Results: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. Conclusions: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.
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| 16. |
- Lethin, Connie, et al.
(författare)
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Formal support for informal caregivers to persons with dementia through the trajectory of the disease in eight European countries
- 2015
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Ingår i: Abstract Booklet. ; , s. 237-237
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Konferensbidrag (refereegranskat)abstract
- Objectives: In European countries knowledge about availability and utilisation of support for informal caregivers caring for older person with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system forinformal caregivers to a PwD, a survey of European support systems and professional providers could serve as a knowledge base and enable European countries to learn from each other.The aim was to explore support for informal caregivers to PwD in terms of availability and utilisation, and to explore professional care providers and their educational levels involved in the support for informal caregivers to PwD through the trajectory of disease across eight European countries.Methods: A mapping system aiming to explore care and service for PwD and informal caregivers in eight European countries was used (Hallberg et al., 2013) to gather information about availability, utilisation and providers of support to informal caregivers caring for PwD.Results: Counselling, caregiver support and education where the support activities that had high availability in the diagnose stage to the intermediate stage with a decrease in late to end of life stage. Utilization was low with a small increase in the intermediate stage. Day care and respite care at home had high availability in the diagnose stage to the intermediate stage with a decrease in the late to end of life stage, utilized by no one or few through all stages. Professionals specialised in dementia (Bachelor to Master degree) provided counselling, education while caregiver support for informal caregivers and day care, respite care and respite care at home as relief for informal caregivers was provided by professionals from upper secondary school to a master degree.Conclusion: Availability and utilisation of support for informal caregivers appears to be related to each countries care and support systems. Countries with National guidelines for PwD and informal caregivers seemed to be more aware about the importance of professionals specialised in dementia in the support.
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| 17. |
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| 18. |
- Marques, Maria J., et al.
(författare)
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Relationship quality and sense of coherence in dementia : results of a European cohort study
- 2019
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Ingår i: International Journal of Geriatric Psychiatry. - : John Wiley & Sons. - 0885-6230 .- 1099-1166. ; 34:5, s. 745-755
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives.Methods: Cross-sectional data from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC).Results: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and with discrepancies was carer stress (negative feelings sub-score). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two.Conclusions: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.
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| 19. |
- Michel, Bleijlevens, et al.
(författare)
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Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study
- 2015
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1378-1391
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care. Background. Country differences in the experience of burden and health-related quality of life are rarely described. Design. Prospective cohort study. Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home care. Statistical analyses focused on descriptive comparisons between groups and countries. Results. Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up. Conclusion. Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being.
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| 20. |
- Rao, Shuan, et al.
(författare)
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RANK rewires energy homeostasis in lung cancer cells and drives primary lung cancer
- 2017
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Ingår i: Genes & Development. - : Cold Spring Harbor Laboratory. - 0890-9369 .- 1549-5477. ; 31:20, s. 2099-2112
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Tidskriftsartikel (refereegranskat)abstract
- Lung cancer is the leading cause of cancer deaths. Besides smoking, epidemiological studies have linked female sex hormones to lung cancer in women; however, the underlying mechanisms remain unclear. Here we report that the receptor activator of nuclear factor-kB (RANK), the key regulator of osteoclastogenesis, is frequently expressed in primary lung tumors, an active RANK pathway correlates with decreased survival, and pharmacologic RANK inhibition reduces tumor growth in patient-derived lung cancer xenografts. Clonal genetic inactivation of KRas(G12D) in mouse lung epithelial cells markedly impairs the progression of KRas(G12D)-driven lung cancer, resulting in a significant survival advantage. Mechanistically, RANK rewires energy homeostasis in human and murine lung cancer cells and promotes expansion of lung cancer stem-like cells, which is blocked by inhibiting mitochondrial respiration. Our data also indicate survival differences in KRas(G12D)-driven lung cancer between male and female mice, and we show that female sex hormones can promote lung cancer progression via the RANK pathway. These data uncover a direct role for RANK in lung cancer and may explain why female sex hormones accelerate lung cancer development. Inhibition of RANK using the approved drug denosumab may be a therapeutic drug candidate for primary lung cancer.
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| 21. |
- Renom-Guiteras, Anna, et al.
(författare)
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Potentially inappropriate medication among people with dementia in eight European countries
- 2018
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Ingår i: Age and Ageing. - : Oxford University Press (OUP). - 0002-0729 .- 1468-2834. ; 47:1, s. 68-74
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: to evaluate the frequency of potentially inappropriate medication (PIM) prescription among older people with dementia (PwD) from eight countries participating in the European study 'RightTimePlaceCare', and to evaluate factors and adverse outcomes associated with PIM prescription.Methods: survey of 2,004 PwD including a baseline assessment and follow-up after 3 months. Interviewers gathered data on age, sex, prescription of medication, cognitive status, functional status, comorbidity, setting and admission to hospital, fall-related injuries and mortality in the time between baseline and follow-up. The European Union(7)-PIM list was used to evaluate PIM prescription. Multivariate regression analysis was used to investigate factors and adverse outcomes associated with PIM prescription.Results: overall, 60% of the participants had at least one PIM prescription and 26.4% at least two. The PIM therapeutic subgroups most frequently prescribed were psycholeptics (26% of all PIM prescriptions) and 'drugs for acid-related disorders' (21%). PwD who were 80 years and older, lived in institutional long-term care settings, had higher comorbidity and were more functionally impaired were at higher risk of being prescribed two PIM or more. The prescription of two or more PIM was associated with higher chance of suffering from at least one fall-related injury and at least one episode of hospitalisation in the time between baseline and follow-up.Conclusions: PIM use among PwD is frequent and is associated with institutional long-term care, age, advanced morbidity and functional impairment. It also appears to be associated with adverse outcomes. Special attention should be paid to psycholeptics and drugs for acid-related disorders.
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| 22. |
- Risco, Ester, et al.
(författare)
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The association between physical dependency and the presence of neuropsychiatric symptoms, with the admission of people with dementia to a long-term care institution : A prospective observational cohort study
- 2015
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Ingår i: International Journal of Nursing Studies. - London : Elsevier. - 0020-7489 .- 1873-491X. ; 52:5, s. 980-987
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Tidskriftsartikel (refereegranskat)abstract
- Background: Dementia is a progressive neurological disorder that causes a high degree of dependency. This dependency has been defined as an increased need for assistance due to deterioration in cognition and physicalfunctioning, and changes in behavior. Highly dependent people with dementia are more likely to be institutionalized.Objectives: To investigate the association between specific categories of physical dependency and the presence ofneuropsychiatric symptoms in people with dementia admitted to a long-term care institution.Design: A prospective observational cohort study.Settings: Home care and long-term care institutions in eight European countries.Participants: People with dementia living at home but at risk of institutionalization and recently institutionalized people with dementia.Method: Baseline and 3-month follow-up interviews were performed between November, 2010 and April, 2012. Thesample consisted of 116 recently institutionalized dementia sufferers and 949 people with dementia still living at home. Physical dependency was measured using the Katz Activity of Daily Living index, and neuropsychiatric symptoms were assessed through The Neuropsychiatric Inventory. Specific categories of dependency were analyzed by performing a logistic regression analysis. This followed examination of baseline characteristics to define the degree of physicaldependency, as factors associated with institutionalization, and evaluation of the same characteristics at 3-month follow-up to detect changes in the degree of physical dependency and neuropsychiatric symptoms associated with recent admission to a long-term care institution.Results: Toileting, dressing and continence dependency was higher in institutionalized people than in those receiving home-care. Delusion, hallucination, agitation, anxiety, apathy, motor-disturbances, night-time behavior and eating disorders were also worse in the institutionalized. Logistic regression analysis showed that independent factors significantly associated with being recently institutionalized were toileting (odds ratio = 2.3; 95% confidence interval = 1.43-3.71) and motor disturbances (odds ratio = 1.81; 95% confidence interval = 1.15-2.87).Conclusions: This study supports the association between type and degree of physical dependency in people with dementia and long-term institutionalization. Institutionalization is associated with physical dependency and the presenceof neuropsychiatric symptoms. (C) 2015 Elsevier Ltd. All rights reserved.
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| 23. |
- Römhild, Josephine, et al.
(författare)
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Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale : Secondary analysis of RightTimePlaceCare data
- 2018
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Ingår i: Health and Quality of Life Outcomes. - 1477-7525. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement. Methods: Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis. Results: The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings. Conclusions: Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.
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| 24. |
- Stephan, Astrid, et al.
(författare)
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Barriers and facilitators to the access to and use of formal dementia care : findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
- 2018
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.METHOD: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.RESULTS: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.CONCLUSION: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.
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| 25. |
- Stephan, Astrid, et al.
(författare)
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Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals.
- 2015
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1392-1404
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. BACKGROUND: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012). METHODS: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). RESULTS: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. CONCLUSION:Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.
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| 26. |
- Thiel, Ansgar, et al.
(författare)
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Health in Elite Sports – a “Bio-Psycho-Social” Perspective
- 2015
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Ingår i: Deutsche Zeitschrift für Sportmedizin (German Journal of Sports Medicine). - : Deutsche Zeitschrift Fur Sportmedizin/German Journal of Sports Medicine. - 0344-5925. ; 66:9, s. 241-248
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Tidskriftsartikel (refereegranskat)abstract
- Background: In the medical practice of elite sports, health, injury, and illness are mostly handled from an exclusively biomedical perspective. However, research has shown that dealing with health in elite sports is strongly influenced by a so called “culture of risk”. Athletes are willing to take extreme health risks in order to be successful in important competitions, and they find themselves in a permanent action dilemma between the necessity of risking and securing their own health at the same time. Our paper emphasises the importance of integrating psychological and social factors into health management strategies in elite sport. Method: The article is based on data from the German Young Olympic Athletes’ Lifestyle and Health Management Study (GOAL Study). This nationwide mixed-method study combines quantitative and qualitative approaches in order to gather a broad range of representative information on squad athletes from all Olympic disciplines as well as in-depth information on selected Olympic disciplines. Results: Injuries and pain are everyday epiphenomena of elite sports, already at young age. In many cases, injuries are the result of a complex interplay of biological, psychological and social processes. Athletes are used to train and compete under constant suffering of pain. In order to fulfil sports specific expectations they develop behavioural patterns that outside the context of elite sports would be characterised as harmful. The process of internalising these patterns already starts in adolescence. Coaches play an important role in this process. Athletes implicitly learn to partly give up their individual pain sensorium.
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| 27. |
- Tucker, S., et al.
(författare)
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Improving the mix of institutional and community care for older people with dementia : an application of the balance of care approach in eight European countries
- 2016
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Ingår i: Aging and Mental Health. - Abingdon : Informa UK Limited. - 1360-7863 .- 1364-6915. ; 20:12, s. 1327-1338
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To examine whether the mix of community and institutional long-term care (ILTC) for people with dementia (PwD) in Europe could be improved; assess the economic consequences of providing alternative services for particular groups of ILTC entrants and explore the transnational application of the ‘Balance of Care’ (BoC) approach. Method: A BoC study was undertaken in Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the UK as part of the RightTimePlaceCare project. Drawing on information about 2014 PwD on the margins of ILTC admission, this strategic planning framework identified people whose needs could be met in more than one setting, and compared the relative costs of the possible alternatives. Results: The findings suggest a noteworthy minority of ILTC entrants could be more appropriately supported in the community if enhanced services were available. This would not necessarily require innovative services, but more standard care (including personal and day care), assuming quality was ensured. Potential cost savings were identified in all countries, but community care was not always cheaper than ILTC and the ability to release resources varied between nations. Conclusions: This is believed to be the first transnational application of the BoC approach, and demonstrates its potential to provide a consistent approach to planning across different health and social care systems. Better comparative information is needed on the number of ILTC entrants with dementia, unit costs and outcomes. Nevertheless, the findings offer important evidence on the appropriateness of current provision, and the opportunity to learn from different countries' experience.
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| 28. |
- Tucker, Sue, et al.
(författare)
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What Makes Institutional Long-Term Care the Most Appropriate Setting for People With Dementia? Exploring the Influence of Client Characteristics, Decision-Maker Attributes, and Country in 8 European Nations
- 2016
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Ingår i: Journal of the American Medical Directors Association. - Philadelphia : Elsevier BV. - 1525-8610 .- 1538-9375. ; 17:5, s. 9-465
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Tidskriftsartikel (refereegranskat)abstract
- To explore the extent to which client characteristics, decision-maker attributes, and country influence judgments of institutional long-term care (ILTC) appropriateness for people with dementia. Design, setting, and participants: A total of 161 experts in dementia care from 8 European countries reviewed a series of 14 vignettes representing people with dementia on the cusp of ILTC admission and indicated the most appropriate setting in which to support each case in a simple discrete choice exercise: own home, very sheltered housing, residential home, or nursing home. At least 16 experts participated in each country (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom). Measurements: Descriptive statistics were used to characterize the experts and their placement preferences. Logistic regression modeling was used to explore the extent to which the sociodemographic and clinical characteristics of people with dementia, and the profession, workplace, and country of decision-makers were associated with ILTC recommendation. Results: Client characteristics, decision-maker attributes, and country all seemed to play a part in influencing professionals' perceptions of the appropriateness of ILTC for people with dementia. Expert decision-makers were more likely to recommend ILTC for individuals who required help with mobility or had multiple care needs, and appeared to give more weight to carers' than clients' wishes. Community-based social workers were less likely than other professional groups to favor ILTC placement. Experts in Finland, Germany, and the United Kingdom were less likely to recommend ILTC than experts in France, the Netherlands, and Estonia; experts in Sweden and Spain took an intermediate position. Conclusion: This study provides new understanding of the factors that shape professionals' perceptions of ILTC appropriateness and highlights the need to construct multifaceted models of institutionalization when planning services for people with dementia. It also has several important clinical implications (including flagging interventions that could decrease the need for ILTC), and provides a basis for enhancing professionals' decision-making capabilities (including the greater involvement of clients themselves).
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| 29. |
- Wiedorn, Max O., et al.
(författare)
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Megahertz serial crystallography
- 2018
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Ingår i: Nature Communications. - : Nature Publishing Group. - 2041-1723. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- The new European X-ray Free-Electron Laser is the first X-ray free-electron laser capable of delivering X-ray pulses with a megahertz inter-pulse spacing, more than four orders of magnitude higher than previously possible. However, to date, it has been unclear whether it would indeed be possible to measure high-quality diffraction data at megahertz pulse repetition rates. Here, we show that high-quality structures can indeed be obtained using currently available operating conditions at the European XFEL. We present two complete data sets, one from the well-known model system lysozyme and the other from a so far unknown complex of a beta-lactamase from K. pneumoniae involved in antibiotic resistance. This result opens up megahertz serial femtosecond crystallography (SFX) as a tool for reliable structure determination, substrate screening and the efficient measurement of the evolution and dynamics of molecular structures using megahertz repetition rate pulses available at this new class of X-ray laser source.
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