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1.
  • Afonso-Argilés, F. Javier, et al. (författare)
  • Emergency department and hospital admissions among people with dementia living at home or in nursing homes : results of the European RightTimePlaceCare project on their frequency, associated factors and costs
  • 2020
  • Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 20:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Evidence is lacking on the differences between hospitalisation of people with dementia living in nursing homes and those living in the community. The objectives of this study were: 1) to describe the frequency of hospital admission among people with dementia in eight European countries living in nursing homes or in the community, 2) to examine the factors associated with hospitalisation in each setting, and 3) to evaluate the costs associated with it. Methods: The present study is a secondary data analysis of the RightTimePlaceCare European project. A cross-sectional survey was conducted with data collected from people with dementia living at home or who had been admitted to a nursing home in the last 3 months, as well as from their caregivers. Data on hospital admissions at 3 months, cognitive and functional status, neuropsychiatric symptoms, comorbidity, polypharmacy, caregiver burden, nutritional status, and falls were assessed using validated instruments. Multivariate regression models were used to investigate the factors associated with hospital admission for each setting. Costs were estimated by multiplying quantities of resources used with the unit cost of each resource and inflated to the year 2019. Results: The study sample comprised 1700 people with dementia living in the community and nursing homes. Within 3 months, 13.8 and 18.5% of people living in nursing homes and home care, respectively, experienced ≥1 hospital admission. In the nursing home setting, only polypharmacy was associated with a higher chance of hospital admission, while in the home care setting, unintentional weight loss, polypharmacy, falls, and more severe caregiver burden were associated with hospital admission. Overall, the estimated average costs per person with dementia/year among participants living in a nursing home were lower than those receiving home care. Conclusion: Admission to hospital is frequent among people with dementia, especially among those living in the community, and seems to impose a remarkable economic burden. The identification and establishment of an individualised care plan for those people with dementia with polypharmacy in nursing homes, and those with involuntary weight loss, accidental falls, polypharmacy and higher caregiver burden in the home care setting, might help preventing unnecessary hospital admissions.
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2.
  • Afram, Basema, et al. (författare)
  • Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries
  • 2014
  • Ingår i: Journal of the American Medical Directors Association. - : Elsevier BV. - 1525-8610. ; 15:2, s. 108-116
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries. Design: An explorative cross-sectional study was conducted in 8 European countries. Setting: Per country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe. Participants: Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study. Measurements: As part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested. Results: Mainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers. Conclusion: Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia. (C) 2014 - American Medical Directors Association, Inc. All rights reserved.
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3.
  • Beerens, Hanneke C., et al. (författare)
  • Change in quality of life of people with dementia recently admitted to long-term care facilities
  • 2015
  • Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1435-1447
  • 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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4.
  • Borgehammar, Stephan, et al. (författare)
  • Vitae Birgittae : en översikt och tre editioner
  • 2017
  • Ingår i: Humanitas : Festskrift till Arne Jönsson - Festskrift till Arne Jönsson. - 9789170612442 ; , s. 177-200
  • 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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5.
  • Broda, Anja, et al. (författare)
  • Perspectives of policy and political decision makers on access to formal dementia care : expert interviews in eight European countries
  • 2017
  • Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 17:1
  • 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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6.
  • Bökberg, Christina, et al. (författare)
  • Care and Service at Home for People With Dementia in Europe
  • 2015
  • Ingår i: Abstractbook Nordic Conference on Advances in Health Care Sciences Research. ; , s. 22-22
  • 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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7.
  • Bökberg, Christina, et al. (författare)
  • Care and Service at Home for Persons With Dementia in Europe
  • 2015
  • Ingår i: Journal of Nursing Scholarship. - Hoboken : Wiley-Blackwell Publishing Inc.. - 1527-6546 .- 1547-5069. ; 47:5, s. 407-416
  • 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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8.
  • Costa, Nadège, et al. (författare)
  • Costs of Care of Agitation Associated With Dementia in 8 European Countries : Results From the RightTimePlaceCare Study
  • 2018
  • Ingår i: Journal of the American Medical Directors Association. - : Elsevier BV. - 1525-8610 .- 1538-9375. ; 19:1, s. 1-95
  • 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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10.
  • Dharamshi, Jennah, et al. (författare)
  • Gene gain facilitated endosymbiotic evolution of Chlamydiae
  • 2023
  • Ingår i: Nature Microbiology. - : Springer Nature. - 2058-5276. ; 8, s. 40-54
  • Tidskriftsartikel (refereegranskat)abstract
    • Chlamydiae is a bacterial phylum composed of obligate animal and protist endosymbionts. However, other members of the Planctomycetes-Verrucomicrobia-Chlamydiae superphylum are primarily free living. How Chlamydiae transitioned to an endosymbiotic lifestyle is still largely unresolved. Here we reconstructed Planctomycetes-Verrucomicrobia-Chlamydiae species relationships and modelled superphylum genome evolution. Gene content reconstruction from 11,996 gene families suggests a motile and facultatively anaerobic last common Chlamydiae ancestor that had already gained characteristic endosymbiont genes. Counter to expectations for genome streamlining in strict endosymbionts, we detected substantial gene gain within Chlamydiae. We found that divergence in energy metabolism and aerobiosis observed in extant lineages emerged later during chlamydial evolution. In particular, metabolic and aerobic genes characteristic of the more metabolically versatile protist-infecting chlamydiae were gained, such as respiratory chain complexes. Our results show that metabolic complexity can increase during endosymbiont evolution, adding an additional perspective for understanding symbiont evolutionary trajectories across the tree of life.
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11.
  • Haiman, Christopher A., et al. (författare)
  • A common variant at the TERT-CLPTM1L locus is associated with estrogen receptor-negative breast cancer
  • 2011
  • Ingår i: Nature Genetics. - : Springer Science and Business Media LLC. - 1546-1718 .- 1061-4036. ; 43:12, s. 61-1210
  • Tidskriftsartikel (refereegranskat)abstract
    • Estrogen receptor (ER)-negative breast cancer shows a higher incidence in women of African ancestry compared to women of European ancestry. In search of common risk alleles for ER-negative breast cancer, we combined genome-wide association study (GWAS) data from women of African ancestry (1,004 ER-negative cases and 2,745 controls) and European ancestry (1,718 ER-negative cases and 3,670 controls), with replication testing conducted in an additional 2,292 ER-negative cases and 16,901 controls of European ancestry. We identified a common risk variant for ER-negative breast cancer at the TERT-CLPTM1L locus on chromosome 5p15 (rs10069690: per-allele odds ratio (OR) = 1.18 per allele, P = 1.0 x 10(-10)). The variant was also significantly associated with triple-negative (ER-negative, progesterone receptor (PR)-negative and human epidermal growth factor-2 (HER2)-negative) breast cancer (OR = 1.25, P = 1.1 x 10(-9)), particularly in younger women (<50 years of age) (OR = 1.48, P = 1.9 x 10(-9)). Our results identify a genetic locus associated with estrogen receptor negative breast cancer subtypes in multiple populations.
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12.
  • Haller, Paul M., et al. (författare)
  • Biomarker-based prediction of fatal and non-fatal cardiovascular outcomes in individuals with diabetes mellitus
  • 2023
  • Ingår i: European Journal of Preventive Cardiology. - 2047-4873 .- 2047-4881. ; 30:12, s. 1218-1226
  • Tidskriftsartikel (refereegranskat)abstract
    • AIMS: The role of biomarkers in predicting cardiovascular outcomes in high-risk individuals is not well established. We aimed to investigate benefits of adding biomarkers to cardiovascular risk assessment in individuals with and without diabetes. 'METHODS AND RESULTS: We used individual-level data of 95 292 individuals of the European population harmonized in the Biomarker for Cardiovascular Risk Assessment across Europe consortium and investigated the prognostic ability of high-sensitivity cardiac troponin I (hs-cTnI), N-terminal prohormone of brain natriuretic peptide (NT-proBNP), and high-sensitivity C-reactive protein (hs-CRP). Cox-regression models were used to determine adjusted hazard ratios of diabetes and log-transformed biomarkers for fatal and non-fatal cardiovascular events. Models were compared using the likelihood ratio test. Stratification by specific biomarker cut-offs was performed for crude time-to-event analysis using Kaplan-Meier plots. Overall, 6090 (6.4%) individuals had diabetes at baseline, median follow-up was 9.9 years. Adjusting for classical risk factors and biomarkers, diabetes [HR 2.11 (95% CI 1.92, 2.32)], and all biomarkers (HR per interquartile range hs-cTnI 1.08 [95% CI 1.04, 1.12]; NT-proBNP 1.44 [95% CI 1.37, 1.53]; hs-CRP 1.27 [95% CI 1.21, 1.33]) were independently associated with cardiovascular events. Specific cut-offs for each biomarker identified a high-risk group of individuals with diabetes losing a median of 15.5 years of life compared to diabetics without elevated biomarkers. Addition of biomarkers to the Cox-model significantly improved the prediction of outcomes (likelihood ratio test for nested models P < 0.001), accompanied by an increase in the c-index (increase to 0.81).CONCLUSION: Biomarkers improve cardiovascular risk prediction in individuals with and without diabetes and facilitate the identification of individuals with diabetes at highest risk for cardiovascular events.
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13.
  • Halter, Tamara, et al. (författare)
  • Ecology and evolution of chlamydial symbionts of arthropods
  • 2022
  • Ingår i: ISME Communications. - : Springer Nature. - 2730-6151. ; 2:1
  • Tidskriftsartikel (refereegranskat)abstract
    • The phylum Chlamydiae consists of obligate intracellular bacteria including major human pathogens and diverse environmental representatives. Here we investigated the Rhabdochlamydiaceae, which is predicted to be the largest and most diverse chlamydial family, with the few described members known to infect arthropod hosts. Using published 16 S rRNA gene sequence data we identified at least 388 genus-level lineages containing about 14 051 putative species within this family. We show that rhabdochlamydiae are mainly found in freshwater and soil environments, suggesting the existence of diverse, yet unknown hosts. Next, we used a comprehensive genome dataset including metagenome assembled genomes classified as members of the family Rhabdochlamydiaceae, and we added novel complete genome sequences of Rhabdochlamydia porcellionis infecting the woodlouse Porcellio scaber, and of 'Candidatus R. oedothoracis' associated with the linyphiid dwarf spider Oedothorax gibbosus. Comparative analysis of basic genome features and gene content with reference genomes of well-studied chlamydial families with known host ranges, namely Parachlamydiaceae (protist hosts) and Chlamydiaceae (human and other vertebrate hosts) suggested distinct niches for members of the Rhabdochlamydiaceae. We propose that members of the family represent intermediate stages of adaptation of chlamydiae from protists to vertebrate hosts. Within the genus Rhabdochlamydia, pronounced genome size reduction could be observed (1.49-1.93 Mb). The abundance and genomic distribution of transposases suggests transposable element expansion and subsequent gene inactivation as a mechanism of genome streamlining during adaptation to new hosts. This type of genome reduction has never been described before for any member of the phylum Chlamydiae. This study provides new insights into the molecular ecology, genomic diversity, and evolution of representatives of one of the most divergent chlamydial families.
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14.
  • Handels, Ron L. H., et al. (författare)
  • Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study
  • 2018
  • Ingår i: Journal of Alzheimer's Disease. - 1387-2877 .- 1875-8908. ; 66:3, s. 1027-1040
  • 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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15.
  • Hockenjos, Vreni, 1972- (författare)
  • Picturing Dissolving Views : August Strindberg and the Visual Media of His Age
  • 2007
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • The subject of this study is August Strindberg’s interaction with the visual media of his day. Its dual aim is to examine Strindberg’s work in the light of media history and to allow Strindberg’s work in turn to illuminate the media history of the fin de siècle. Taking its cue from the commonplace scholarly observation that Strindberg’s drama, particularly that of his later phase, is strikingly “cinematic”, it asks: What do such comparisons really tell us about Strindberg’s art and what, if anything, do they tell us about cinema?The thesis of this study is that the putatively “cinematic” style of Strindberg’s writings can only be understood against the backdrop of a mass culture, oriented towards the visual sense, which was undergoing rapid expansion at the turn of the last century. In devising his “dream play techniques”, it argues, Strindberg both drew on and reacted against various image-based modes of representation that had become extremely widespread in the late nineteenth century. The loss of reality that is so prominent a feature of works such as To Damascus (1898) or A Dream Play (1901) should in this sense be regarded as marked by an experience of mediatization, that is, the steady incorporation of all aspects of daily life by mass media technologies. Shifting the spotlight away from cinema, a critical encounter with Strindberg’s work can cast light on largely overlooked media practices such as magic lantern or Sciopticon exhibition, panoramic entertainments, instantaneous photography, and the introduction of the halftone process in printing. At the same time as it unsettles received notions of Strindberg’s drama as “cinematic”, the study seeks to show how the writings of this revolutionary artist can provide fresh material for a reassessment of life in a media-saturated age.
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16.
  • Jelley, Hannah, et al. (författare)
  • Carers' experiences of timely access to and use of dementia care services in eight European countries
  • 2021
  • Ingår i: Ageing & Society. - : Cambridge University Press. - 0144-686X .- 1469-1779. ; 41:2, s. 403-420
  • Tidskriftsartikel (refereegranskat)abstract
    • Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.
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17.
  • Joshi, Peter K, et al. (författare)
  • Directional dominance on stature and cognition in diverse human populations
  • 2015
  • Ingår i: Nature. - : Springer Science and Business Media LLC. - 0028-0836 .- 1476-4687. ; 523:7561, s. 459-462
  • 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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18.
  • Karlsson, Staffan, 1959-, et al. (författare)
  • Dementia care in eight European countries from the perspective of recipients and their caregivers
  • 2015
  • Ingår i: Abstract Booklet. ; , s. 318-318
  • 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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19.
  • Karlsson, Staffan, 1959-, et al. (författare)
  • Dementia care in European countries, from the perspective of people with dementia and their caregivers
  • 2015
  • Ingår i: Journal of Advanced Nursing. - Chichester : Wiley-Blackwell Publishing Inc.. - 0309-2402 .- 1365-2648. ; 71:6, s. 1405-1416
  • 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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20.
  • Kehoe, Laura, et al. (författare)
  • Make EU trade with Brazil sustainable
  • 2019
  • Ingår i: Science. - : American Association for the Advancement of Science (AAAS). - 0036-8075 .- 1095-9203. ; 364:6438, s. 341-
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
  •  
21.
  • Kerpershoek, Liselot, et al. (författare)
  • 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
  • Ingår i: Aging & Mental Health. - : ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD. - 1360-7863 .- 1364-6915. ; 22:7, s. 897-902
  • 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.
  •  
22.
  • Kerpershoek, Liselot, et al. (författare)
  • Optimizing access to and use of formal dementia care : Qualitative findings from the European Actifcare study
  • 2019
  • Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 27:5, s. e814-e823
  • 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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23.
  • Kolberg, Matthias, et al. (författare)
  • A new tyrosyl radical on Phe208 as ligand to the diiron center in Escherichia coli ribonucleotide reductase, mutant R2-Y122H. Combined x-ray diffraction and EPR/ENDOR studies.
  • 2005
  • Ingår i: J Biol Chem. - 0021-9258. ; 280:12, s. 11233-11246
  • Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
    • The R2 protein subunit of class I ribonucleotide reductase (RNR) belongs to a structurally related family of oxygen bridged diiron proteins. In wild-type R2 of Escherichia coli, reductive cleavage of molecular oxygen by the diferrous iron center generates a radical on a nearby tyrosine residue (Tyr122), which is essential for the enzymatic activity of RNR, converting ribonucleotides into deoxyribonucleotides. In this work, we characterize the mutant E. coli protein R2-Y122H, where the radical site is substituted with a histidine residue. The x-ray structure verifies the mutation. R2-Y122H contains a novel stable paramagnetic center which we name H, and which we have previously proposed to be a diferric iron center with a strongly coupled radical, Fe(III)Fe(III)R.. Here we report a detailed characterization of center H, using 1H/2H -14N/15N- and 57Fe-ENDOR in comparison with the Fe(III)Fe(IV) intermediate X observed in the iron reconstitution reaction of R2. Specific deuterium labeling of phenylalanine residues reveals that the radical results from a phenylalanine. As Phe208 is the only phenylalanine in the ligand sphere of the iron site, and generation of a phenyl radical requires a very high oxidation potential, we propose that in Y122H residue Phe208 is hydroxylated, as observed earlier in another mutant (R2-Y122F/E238A), and further oxidized to a phenoxyl radical, which is coordinated to Fe1. This work demonstrates that small structural changes can redirect the reactivity of the diiron site, leading to oxygenation of a hydrocarbon, as observed in the structurally similar methane monoxygenase, and beyond, to formation of a stable iron-coordinated radical.
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24.
  •  
25.
  • Lethin, Connie, et al. (författare)
  • Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study
  • 2016
  • Ingår i: BMC Geriatrics. - London : Springer Science and Business Media LLC. - 1471-2318. ; 16:1
  • 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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