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  • 1.
    Bieber, A.
    et al.
    Medical Faculty, Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Stephan, A.
    Medical Faculty, Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Verbeek, H.
    School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, The Netherlands.
    Verhey, F.
    School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, The Netherlands.
    Kerpershoek, L.
    School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, The Netherlands.
    Wolfs, C.
    School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, The Netherlands.
    de Vugt, M.
    School for Mental Health and Neuroscience, Alzheimer Center Limburg, Department of Psychiatry and Neuropsychology, Maastricht University Medical Center, Maastricht, The Netherlands.
    Woods, R. T.
    Dementia Services Development CentreWales, Bangor University, Bangor, UK.
    Røsvik, J.
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, and Department of GeriatricMedicine, Oslo University Hospital, Oslo, Norway.
    Selbaek, G.
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, and Department of GeriatricMedicine, Oslo University Hospital, Oslo, Norway.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Department of Neurobiology, Care sciences and Society, Karolinska Institut, Stockholm, Sweden.
    Wimo, A.
    Department of Neurobiology, Care sciences and Society, Karolinska Institut, Stockholm, Sweden.
    Hopper, L.
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Irving, K.
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Marques, M. J.
    CEDOC, Chronic Diseases Research Centre, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
    Gonçalves-Pereira, M.
    CEDOC, Chronic Diseases Research Centre, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
    Portolani, E.
    Alzheimer’s Research Unit-Memory Clinic, Brescia, Italy.
    Zanetti, O.
    Alzheimer’s Research Unit-Memory Clinic, Brescia, Italy.
    Meyer, G.
    Medical Faculty, Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Access to community care for people with dementia and their informal carers: Case vignettes for a European comparison ofstructures and common pathways to formalcare [Zugang zu professioneller Unterstützung für Menschen mit Demenz und ihre Angehörigen: Fallvignetten für den europäischen Vergleich von Strukturen und Zugangswegen zu professioneller Pflege]2018Inngår i: Zeitschrift für Gerontologie und Geriatrie (Print), ISSN 0948-6704, E-ISSN 1435-1269, Vol. 51, nr 5, s. 530-536Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background

    People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.

    Objectives

    Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.

    Materials and methods

    The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.

    Results

    A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.

    Conclusion

    Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

  • 2.
    Broda, Anja
    et al.
    Martin Luther University Halle-Wittenberg, Institute of Health and Nursing Sciences, Halle (Saale), Germany.
    Bieber, Anja
    Martin Luther University Halle-Wittenberg, Institute of Health and Nursing Sciences, Halle (Saale), Germany.
    Meyer, Gabriele
    Martin Luther University Halle-Wittenberg, Institute of Health and Nursing Sciences, Halle (Saale), Germany.
    Hopper, Louise
    Dublin City University, School of Nursing and Human Sciences, Dublin, Ireland.
    Joyce, Rachael
    Dublin City University, School of Nursing and Human Sciences, Dublin, Ireland.
    Irving, Kate
    Dublin City University, School of Nursing and Human Sciences, Dublin, Ireland.
    Zanetti, Orazio
    IRCCS S. Giovanni di Dio "Fatebenefratelli", Brescia, Italy.
    Portolani, Elisa
    IRCCS S. Giovanni di Dio "Fatebenefratelli", Brescia, Italy.
    Kerpershoek, Liselot
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    Verhey, Frans
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    de Vugt, Marjolein
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    Wolfs, Claire
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    Eriksen, Siren
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Oslo, Norway.
    Røsvik, Janne
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Oslo, Norway; Department of Geriatric Medicine, Oslo University Hospital, Oslo, Norway.
    Marques, Maria J.
    CEDOC, Chronic Diseases Research Center, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
    Gonçalves-Pereira, Manuel
    CEDOC, Chronic Diseases Research Center, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Woods, Bob
    Bangor University, Dementia Services Development Centre, Bangor, UK.
    Jelley, Hannah
    Bangor University, Dementia Services Development Centre, Bangor, UK.
    Orrell, Martin
    Nottingham University, Institute of Mental Health, Nottingham, UK.
    Stephan, Astrid
    Martin Luther University Halle-Wittenberg, Institute of Health and Nursing Sciences, Halle (Saale), Germany.
    Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries2017Inngår i: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 17, nr 1, artikkel-id 518Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

  • 3.
    Kerpershoek, Liselot
    et al.
    Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.
    Wolfs, Claire
    Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.
    Verhey, Frans
    Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.
    Jelley, Hannah
    Bangor University, Bangor, UK.
    Woods, Bob
    Bangor University, Bangor, UK.
    Bieber, Anja
    Martin-Luther University Halle-Wittenberg, Halle, Germany.
    Bartoszek, Gabriele
    Martin-Luther University Halle-Wittenberg, Halle, Germany.
    Stephan, Astrid
    Martin-Luther University Halle-Wittenberg, Halle, Germany.
    Selbaek, Geir
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital, Tonsberg, Norway; Centre for Old Age Psychiatry Research, Innlandet Hospital Trust, Ottestad, Norway;Faculty of Medicine, University of Oslo, Oslo, Norway.
    Eriksen, Siren
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital, Tonsberg, Norway.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för vårdvetenskap, Med-Vårdvetenskap. Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Hopper, Louise
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Irving, Kate
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Marques, Maria J.
    CEDOC, Nova Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
    Goncalves-Pereira, Manuel
    CEDOC, Nova Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
    Portolani, Daniel
    Zanetti, Orazio
    IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
    Vugt, Marjolein
    Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.
    Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study2019Inngår i: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 27, nr 5, s. e814-e823Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

  • 4.
    Mamhidir, Anna-Greta
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Department of Neurobiology, Care Sciences and Society (NVS), Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Fläckman, Birgitta
    Department of Health Care Sciences of Ersta, Sköndal University College, Stockholm, Sweden.
    Wimo, Anders
    Department of Neurobiology, Care Sciences and Society (NVS), Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden; Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
    Sköldunger, Anders
    Department of Neurobiology, Care Sciences and Society (NVS), Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden; Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
    Engström, Maria
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Nursing Department, Medicine and Health College, Lishui University, Lishui, China.
    Systematic pain assessment in nursing homes: a cluster-randomized trial using mixed-methods approach2017Inngår i: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 17, artikkel-id 61Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background

    Chronic pain affects nursing home residents’ daily life. Pain assessment is central to adequate pain management. The overall aim was to investigate effects of a pain management intervention on nursing homes residents and to describe staffs’ experiences of the intervention.

    Methods

    A cluster-randomized trial and a mixed-methods approach. Randomized nursing home assignment to intervention or comparison group. The intervention group after theoretical and practical training sessions, performed systematic pain assessments using predominately observational scales with external and internal facilitators supporting the implementation. No measures were taken in the comparison group; pain management continued as before, but after the study corresponding training was provided. Resident data were collected baseline and at two follow-ups using validated scales and record reviews. Nurse group interviews were carried out twice. Primary outcome measures were wellbeing and proxy-measured pain. Secondary outcome measures were ADL-dependency and pain documentation.

    Results

    Using both non-parametric statistics on residential level and generalized estimating equation (GEE) models to take clustering effects into account, the results revealed non-significant interaction effects for the primary outcome measures, while for ADL-dependency using Katz-ADL there was a significant interaction effect. Comparison group (n = 66 residents) Katz-ADL values showed increased dependency over time, while the intervention group demonstrated no significant change over time (n = 98). In the intervention group, 13/44 residents showed decreased pain scores over the period, 14/44 had no pain score changes ≥ 30% in either direction measured with Doloplus-2. Furthermore, 17/44 residents showed increased pain scores ≥ 30% over time, indicating pain/risk for pain; 8 identified at the first assessment and 9 were new, i.e. developed pain over time. No significant changes in the use of drugs was found in any of the groups. Nursing pain related documentation was sparse. In general, nurses from the outset were positive regarding pain assessments. Persisting positive attitudes seemed strengthened by continued assessment experiences and perceptions of improved pain management.

    Conclusion

    The implementation of a systematic work approach to pain issues in nursing homes indicates that an increased awareness, collaboration across and shared understanding among the team members of the pain assessment results can improve pain management and lead to decreased physical deterioration or the maintenance of physical and functional abilities among NH residents. However, pain (proxy-measured) and wellbeing level did not reveal any interaction effects between the groups over time.

    Trial registration

    The study was registered in ISRCTN71142240 in September 2012, retrospectively registered.

  • 5.
    Marques, Maria J.
    et al.
    CEDOC, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Portugal.
    Woods, Bob
    Dementia Services Development Centre (DSDC) Wales, Bangor University, United Kingdom.
    Hopper, Louise
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Jelley, Hannah
    Dementia Services Development Centre (DSDC) Wales, Bangor University, United Kingdom.
    Irving, Kate
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Kerpershoek, Liselot
    Department of Psychiatry and Neuropsychology and Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, The Netherlands.
    Meyer, Gabriele
    Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Bieber, Anja
    Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Stephan, Astrid
    Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Sköldunger, Anders
    Department of Neurobiology, Care sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för vårdvetenskap, Med-Vårdvetenskap. Department of Neurobiology, Care sciences and Society, Karolinska Institutet, Stockholm.
    Selbaek, Geir
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg.; Department of Geriatric Medicine, Oslo University Hospital, Oslo, Norway.
    Rosvik, Janne
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg.; Faculty of Medicine, University of Oslo, Oslo.; Centre for Old Age Psychiatric Research, Ottestad, Norway.
    Zanetti, Orazio
    Alzheimer's Research Unit-Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
    Portolani, Elisa
    Alzheimer's Research Unit-Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy.
    de Vugt, Marjolein
    Department of Psychiatry and Neuropsychology and Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, The Netherlands.
    Verhey, Frans
    Department of Psychiatry and Neuropsychology and Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht University, Maastricht, The Netherlands.
    Gonçalves-Pereira, Manuel
    CEDOC, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Portugal.
    Relationship quality and sense of coherence in dementia: results of a European cohort study2019Inngår i: International Journal of Geriatric Psychiatry, ISSN 0885-6230, E-ISSN 1099-1166, Vol. 34, nr 5, s. 745-755Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

  • 6.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Vårdvetenskap. Karolinska Institutet, Inst för neurobiologi, vårdvetenskap och samhälle.
    Physical functioning in old age: Temporal trends and geographical variation in Sweden2014Doktoravhandling, med artikler (Annet vitenskapelig)
    Abstract [en]

    ADL disability is an age-related condition that leads to poor quality of life, increased health-related care costs, and increased mortality. The proportion of older adults are increasing worldwide, and it is therefore important both for society and the individual that research provide us with information about the process leading to ADL disability and how to identify persons at risk. The most effective design for following the aging process is found in population-based studies that include all older persons, both those living at home and those in residential care. This thesis uses data from three populationbased studies: the Kungsholmen Project (KP), the Nordanstig Project (NP) and the SNAC-N study. The aims of the thesis was to examine temporal changes in physical functioning in older adults, to identify underlying development of new disability and functional decline, as well as to explore geographical variation in physical functioning between urban and rural elderly habitats. We also wanted to describe the amount of informal and formal care in relation to levels of ADL disability. The ultimate aim was to identify factors suitable for prevention. Study I: We I compared two populations of older adults, 75 years and older (the KP and the NP) from different living areas (urban and rural) and found differences in ADL disability, morbidity and disease patterns. The most common health problem in both areas was cardiovascular diseases (39.9% in the urban area and 45.2% in the rural area). There were great differences, urban vs rural, in the prevalence of stroke (7.4% vs 14.0%), diabetes mellitus (6.3% vs 16.1%), and Parkinson’s disease (1.0% vs 3.7%). Having two or more diseases vs. no disease was more common in the rural area than in the urban area, odds ratio (OR) = 1.9, 95% confidence interval (CI) = 1.4-2.4. Living area differences (urban vs rural) were found in population attributable risk (PAR) for disability due to stroke (5.6 vs 32.2), diabetes mellitus (1.2 vs 6.1), fractures (1.4 vs 10.7), and hearing impairment (8.7 vs 22.0). Study II: Data were gathered from a population-based study of adults 60 years and older, the SNAC-Nordanstig (SNAC-N), and the study explored the association between ADL disability, muscle strength, disease severity and mortality. Upper and lower muscle strength decreased with increasing age, with a tendency for lower performance in women than in men. A significant association was found between ADL disability and having reduced lower muscle strength. Having an increased number of diseases increased the risk of being ADL disabled. Diseases with the greatest impact on ADL disability were musculoskeletal diseases, hypertension and dementia. ADL disability and being unable to perform the gait speed test were factors that increased the risk of death. Inability to perform the chair stand test or weaker grip strength increased the risk of death for men. Study III: Data from two populations, 78 years and older, the NP (1995-1998) and the SNAC-N study (2001-2003), were used to study time trends in the prevalence of ADL disability and survival, comparing two cohorts. The prevalence of ADL disability was stable from 1995-1998 to 2001-2002 for men, while women became more disabled in ADL over the time period, (OR 2.36; CI 1.12-4.94). No significant difference was found in survival time between the cohorts in either ADL-disabled or non-disabled persons. There was a tendency for increased survival for non-disabled persons in the SNAC-N study compared with the NP, although it was not significant; this was particularly true for women. In general, women survived longer than men did regardless of whether they were ADL disabled or not. Study IV: The aims were to examine the incidence of ADL disability, to explore whether being physically active earlier in life is a significant predictor of being disability free at follow-up, and to describe the amount of informal and formal care received in relation to ADL disability. Data were gathered from persons 78 years and older in the SNAC-N study. The incidence rates for men were almost the same in the age group 78-81 compared with the age group 84 years and older, 42.3 vs. 42.5/1000 person-years. For women the incidence rate for ADL disability increased significantly from the age group 78-81 to the age group 84 years and older, 20.8 vs. 118.3/1000 person-years. In the age group 78-81 years, being physically active earlier (aOR 6.2) and during the past 12 months before the baseline examination (aOR 2.9) were both significant preventive factors for ADL disability. The amount of both informal and formal care increased with the number of ADL activities the persons were dependent on and the amount of informal care was greater than the amount of formal care. Conclusions: This thesis shows an increase in ADL disability due to increased age, and that women are more ADL disabled than men, but also shows how diseases affect ADL disability. The diseases that negatively affect ADL are often due to unhealthy lifestyle, e.g. physical inactivity, obesity and smoking, etc. The results show the importance of prevention of the factors that cause ADL disability, preferably already in midlife. The amount of both informal and formal care increased significantly with the number of ADL activities the persons required help with. Regarding prevention of becoming ADL disabled, it is of importance to find ways to postpone the onset of ADL disability so that we can live longer without disability.

  • 7.
    Sjölund, Britt-Marie
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap.
    Mamhidir, Anna-Greta
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap.
    Engström, Maria
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap.
    Pain prevalence among residents living in nursing homes and factors associated with quality of life and well-being2017Inngår i: Artikkel i tidsskrift (Annet vitenskapelig)
  • 8.
    Sjölund, Britt-Marie
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Wimo, Anders
    Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden; Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Engström, Maria
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap.
    von Strauss, Eva
    The Swedish Red Cross University College, Stockholm, Sweden; Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Incidence of ADL Disability in Older Persons, Physical Activities as a Protective Factor and the Need for Informal and Formal Care: Results from the SNAC-N Project2015Inngår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 10, nr 9, artikkel-id e0138901Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: The aim of the study was to examine 1) the incidence of disability in Activities of Daily Living (ADL), in persons 78 years and older 2) explore whether being physical active earlier is a significant predictor of being disability free at follow-up and 3) describe the amount of informal and formal care in relation to ADL-disability.

    METHODS: Data were used from a longitudinal community-based study in Nordanstig (SNAC-N), a part of the Swedish National Study on Aging and Care (SNAC). To study objectives 1) and 2) all ADL-independent participants at baseline (N = 307) were included; for objective 3) all participants 78 years and older were included (N = 316). Data were collected at baseline and at 3- and 6-year follow-ups. ADL-disability was defined as a need for assistance in one or more activities. Informal and formal care were measured using the Resource utilization in Dementia (RUD)-instrument.

    RESULTS: The incidence rates for men were similar in the age groups 78-81and 84 years and older, 42.3 vs. 42.5/1000 person-years. For women the incidence rate for ADL-disability increased significantly from the age group 78-81 to the age group 84 years and older, 20.8 vs.118.3/1000 person-years. In the age group 78-81 years, being physically active earlier (aOR 6.2) and during the past 12 month (aOR 2.9) were both significant preventive factors for ADL-disability. Both informal and formal care increased with ADL-disability and the amount of informal care was greater than formal care. The incidence rate for ADL-disability increases with age for women and being physically active is a protective factor for ADL-disability.

    CONCLUSION: The incidence rate for ADL-disability increases with age for women, and being physical active is a protective factor for ADL-disability.

  • 9.
    Sjölund, Britt-Marie
    et al.
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Vårdvetenskap. Aging Research Center (ARC), Karolinska Institutet-Stockholm University, Gävlegatan 16, 113 30 Stockholm, Sweden .
    Wimo, Anders
    Aging Research Center (ARC), Karolinska Institutet-Stockholm University, Gävlegatan 16, 113 30 Stockholm, Sweden .
    Qiu, Chengxuan
    Aging Research Center (ARC), Karolinska Institutet-Stockholm University, Gävlegatan 16, 113 30 Stockholm, Sweden .
    Engström, Maria
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Vårdvetenskap.
    von Strauss, Eva
    Aging Research Center (ARC), Karolinska Institutet-Stockholm University, Gävlegatan 16, 113 30 Stockholm, Sweden .
    Time trends in prevalence of activities of daily living (ADL) disability and survival: Comparing two populations (aged 78+ years) living in a rural area in Sweden2014Inngår i: Archives of gerontology and geriatrics (Print), ISSN 0167-4943, E-ISSN 1872-6976, Vol. 58, nr 3, s. 370-375Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim was to study time trends in prevalence of disability in ADL and survival among men and women 78 years and older comparing two cohorts. The study was a time trend study based on two population-based community cohorts, the Nordanstig Project (NP), collected 1995-1998 and the Swedish National Study on Aging and Care in Nordanstig (SNAC-N), collected 2001-2003. The participants were people aged 78 years and older from the NP cohort (N = 303) and from the SNAC-N cohort (N = 406). All were clinically examined by physicians and nurses using standardized protocols. Disability was defined as a need for assistance in one or more ADL activities. The prevalence of disability and survival were compared using logistic and Cox models. The prevalence of ADL disability was stable for men, while women became more disabled in ADL during the time period, OR 2.36 (1.12-4.94). There was no significant difference in survival time between the cohorts in either ADL disabled persons or nondisabled persons. There was a tendency for increased survival for non-disabled persons in SNAC-N compared with NP, although not significant; this was particularly true for women. In general, women survived longer than men did regardless of whether they were ADL disabled or not. The time trends for ADL disability found in the study show that ADL disability had increased in women but not in men. More studies are needed to identify risk factors for ADL disability with a view to preventing it in time. (C) 2014 Elsevier Ireland Ltd. All rights reserved.

  • 10.
    Stephan, Astrid
    et al.
    Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Bieber, Anja
    Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Hopper, Louise
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Joyce, Rachael
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Irving, Kate
    School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland.
    Zanetti, Orazio
    Alzheimer Unit, Brescia (BS), Italy.
    Portolani, Elisa
    Alzheimer Unit, Brescia (BS), Italy.
    Kerpershoek, Liselot
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    Verhey, Frans
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    de Vugt, Marjolein
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    Wolfs, Claire
    Alzheimer Center Limburg, Maastricht University, Maastricht, The Netherlands.
    Eriksen, Siren
    Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway.
    Røsvik, Janne
    Department of Geriatric Medicine, Oslo University Hospital, Aldring og Helse, Oslo, Norway.
    Marques, Maria J.
    Chronic Diseases Research Center, Nova Medical School | Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portuga.
    Gonçalves-Pereira, Manuel
    Chronic Diseases Research Center, Nova Medical School | Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portuga.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för vårdvetenskap, Med-Vårdvetenskap.
    Jelley, Hannah
    Dementia Services Development Centre Wales, Bangor University, Bangor, UK.
    Woods, Bob
    Dementia Services Development Centre Wales, Bangor University, Bangor, UK.
    Meyer, Gabriele
    Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany.
    Broda, A. ()
    Bartoszek, G. ()
    Orrell, M. ()
    Wimo, A. ()
    Sköldunger, A. ()
    Engedal, K. ()
    Selbæk, G. ()
    Michelet, M. ()
    Irving, K. ()
    Conceição Balsinha, M. ()
    Bárrios, H. ()
    Machado, A. ()
    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 countries2018Inngår i: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 18, nr 1, artikkel-id 131Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    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.

  • 11.
    Tuvesson, Hanna
    et al.
    Department of Health, Blekinge Institute of Technology, Karlskrona, Sweden.
    Hellström, A.
    Department of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden.
    Sjöberg, L.
    Aging Research Center, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Aging Research Center, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Nordell, E.
    Department of Geriatric Medicine, Skåne University Hospital, Malmö, Sweden.
    Fagerström, C.
    Blekinge Centre of Competence, Blekinge County Hospital, Karlskrona, Sweden.
    Life weariness and suicidal thoughts in late life: a national study in Sweden2018Inngår i: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 22, nr 10, s. 1365-137Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives: This study aimed at investigating the point prevalence of life weariness and suicidal thoughts and their relationship with socio-demographic characteristics in a population of older adults in Sweden. Method: Data from 7913 individuals aged 60 years and older were drawn from the Swedish National Study on Aging and Care, a collaborative study in Sweden. Life weariness and suicidal thoughts were measured by one item derived from the Montgomery–Åsberg Depression Rating Scale. A multinomial regression model was used to investigate the relationships of socio-demographic characteristics with life weariness and suicidal thoughts. Results: Living in urban and semi-urban areas, being of advanced age, being divorced and having lower educational levels were related to life weariness. Living in a residential care facility, being widowed or unmarried, being born in a non-Nordic European country and experiencing financial difficulties were related to both life weariness and suicidal thoughts. Sex was found to be unrelated to either life weariness or suicidal thoughts. Conclusion: This study found that several socio-demographic variables were associated with life weariness and suicidal thoughts among older adults. Specific attention to older individuals with these characteristics may be warranted as they might be more vulnerable to life weariness and suicidal thoughts.

  • 12.
    Wimo, Anders
    et al.
    Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden; Center for Alzheimer Research at Karolinska Institutet, Stockholm, Sweden; Centre for Research & Development, Uppsala University/County Council of Gävleborg, Sjukhuset i Gävle, Sweden.
    Sjölund, Britt-Marie
    Högskolan i Gävle, Akademin för hälsa och arbetsliv, Avdelningen för hälso- och vårdvetenskap, Medicin- och vårdvetenskap. Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Sköldunger, Anders
    Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Qui, Chengxuan
    Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden.
    Klarin, Inga
    Department of Geriatrics, Karolinska University Hospital, Stockholm, Sweden; Division of Clinical Geriatrics, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm Sweden.
    Nordberg, Gunilla
    The Swedish Dementia Centre, Stockholm, Sweden.
    von Strauss, Eva
    Aging Research Center (ARC), Karolinska Institutet and Stockholm University, Stockholm, Sweden; The Swedish Red Cross University College, Stockholm, Sweden.
    Cohort Effects in the Prevalence and Survival of People with Dementia in a Rural Area in Northern Sweden2016Inngår i: Journal of Alzheimer's Disease, ISSN 1387-2877, E-ISSN 1875-8908, Vol. 50, nr 2, s. 387-396Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Recent studies suggest that trends in cardiovascular risk may result in a decrease in age-specific prevalence of dementia. Studies in rural areas are rare.

    Objectives: To study cohort effects in dementia prevalence and survival of people with dementia in a Swedish rural area.

    Methods: Participants were from the 1995-1998 Nordanstig Project (NP) (n = 303) and the 2001-2003 Swedish National study on Aging and Care in Nordanstig (SNAC-N) (n = 384). Overall 6-year dementia prevalence and mortality in NP and SNAC-N were compared for people 78 years and older. Logistic regression analyses were used to calculate odds ratios (ORs) and 95% confidence intervals (CIs) for dementia occurrence using the NP study population as the reference group. Cox regression models were used to analyze time to death.

    Results: The crude prevalence of dementia was 21.8% in NP and 17.4% in SNAC-N. When the NP cohort was used as the reference group, the age- and gender-adjusted OR of dementia was 0.71 (95% CI 0.48-1.04) in SNAC-N; the OR was 0.47 (0.24-0.90) for men and 0.88 (0.54-1.44) for women. In the extended model, the OR of dementia was significantly lower in SNAC-N than in the NP cohort as a whole (0.63; 0.39-0.99) and in men (0.34; 0.15-0.79), but not in women (0.81; 0.46-1.44). The Cox regression models indicated that the hazard ratio of dying was lower in the SNAC-N than NP population.

    Conclusions: Trends toward a lower prevalence of dementia in high-income countries seem to be evident in this Swedish rural area, at least in men.

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