| 1. |
- Afram, Basema, et al.
(författare)
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Predicting institutional long-term care admission in dementia: a mixed-methods study of informal caregivers' reports
- 2015
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Ingår i: Journal of Advanced Nursing. - Chichester : Wiley. - 0309-2402 .- 1365-2648. ; 71:6, s. 1351-1362
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Tidskriftsartikel (refereegranskat)abstract
- AimTo investigate agreement between: (1) expected reasons and actual reasons for admission of people with dementia according to informal caregivers; (2) scores on measurement instruments prior to admission and the actual reasons for admission according to informal caregivers. BackgroundTimely admission of people with dementia is a crucial issue. Information is highly warranted on whether informal caregivers are capable of prior identification of causes of admission and, can thus be considered a reliable prospective source on causes of admission. DesignA cohort study among informal caregivers of people with dementia who made a transition to institutional long-term care. MethodsQualitative data on the expected and actual reasons for admission were collected via open-ended questions at baseline and follow-up. Furthermore, at baseline, data were collected using measurement instruments to measure pre-admission characteristics. Interviews took place between November 2010-April 2012. After categorizing the answers, the agreement between the expected and actual reasons was calculated. Furthermore, bivariate associations were calculated between the actual reasons for admission and scores on corresponding measurement instruments. Results/FindingsFor most informal caregivers, there was agreement between their statements on the expected reason and the actual reason for admission. A third of the caregivers showed no conformity. Bivariate associations showed that there is also agreement between the actual reasons for admission and scores on corresponding measurement instruments. ConclusionInformal caregivers can be considered reliable sources of information regarding what causes the admission of a person with dementia. Professional care should anticipate informal caregivers' statements and collaborate with them to strive for timely and appropriate admission.
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| 2. |
- Bökberg, Christina, et al.
(författare)
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Care and Service at Home for Persons With Dementia in Europe
- 2015
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Ingår i: Journal of Nursing Scholarship. - Hoboken : Wiley-Blackwell Publishing Inc.. - 1527-6546 .- 1547-5069. ; 47:5, s. 407-416
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries.Design: A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare.Methods: The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia.Findings: Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries.Conclusions: The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs.Clinical Relevance: This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home. © 2015 Sigma Theta Tau International.
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| 3. |
- de Mauleon, Adelaide, et al.
(författare)
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Associated Factors With Antipsychotic Use in Long-Term Institutional Care in Eight European Countries: Results From the RightTimePlaceCare Study
- 2014
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Ingår i: Journal of the American Medical Directors Association. - Philadelphia : Elsevier. - 1525-8610 .- 1538-9375. ; 15:11, s. 812-818
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To determine factors associated with the antipsychotic (AP) prescription for people with dementia (PwD) recently admitted to institutional long-term carefacilities (LTCFs) and to ascertain differences in the use of this medication in 8 European countries.Design: An exploratory cross-sectional study.Setting: LTCFs from 8 European countries (Estonia, Finland, France, Germany, The Netherlands, Spain, Sweden, and England).Participants: A total of 791 PwD recently admitted to an LTCF and their caregivers.Measurements: Baseline data from RightTimePlaceCare survey was used. Patients' medical conditions, neuropsychiatric symptoms, physical and cognitive status, and medications were recorded. Multiple logistic regression models were used to assess associations with the AP use. Results: A group of 296 patients (37.4%) of 791 patients recently admitted received AP medication. The prevalence of the use of 1 or more APs varied between study countries, ranging from 12% in Sweden to 54% inSpain. Factors independently associated with the AP use were living in Sweden [odds ratio (OR) 0.12, 95% confidence interval (CI) 0.05-0.30], Finland (OR 0.26, 95% CI 0.14-0.48), Germany (OR 2.75, 95% CI 1.55-4.86) and Estonia (OR 6.79, 95% CI 3.84-12.0). The odds of AP use decreased with the presence of a dementia specific unit inthe LTCF (OR 0.60, 95% CI 0.39-0.92), but was higher among residents with a hyperactivity behavior (OR 2.12, 95% CI 1.41-3.18).Conclusion: The current study shows that more than one-third of the residents recently admitted received APs and that prescription frequency across countries varied significantly. This study raises the possibility that the presence of a dementia-specific unit might play a role in the AP use. Further studies should investigate this association and seek better understanding of what will achieve optimal quality of AP use among newly admitted residents in LTCF. © 2014 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
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| 4. |
- Karlsson, Staffan, 1959-, et al.
(författare)
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Dementia care in European countries, from the perspective of people with dementia and their caregivers
- 2015
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Ingår i: Journal of Advanced Nursing. - Chichester : Wiley-Blackwell Publishing Inc.. - 0309-2402 .- 1365-2648. ; 71:6, s. 1405-1416
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.Background: Living with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements.Design: Qualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden.Methods: Persons with dementia and their informal caregivers (N = 137) participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested.Results: The core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organization to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important.Conclusion: As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organization to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver. © 2014 John Wiley & Sons Ltd.
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| 5. |
- Lethin, Connie, et al.
(författare)
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Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study
- 2016
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Ingår i: BMC Geriatrics. - London : Springer Science and Business Media LLC. - 1471-2318. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (>= 65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. Methods: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. Results: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. Conclusions: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.
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| 6. |
- Lethin, Connie, et al.
(författare)
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Predicting caregiver burden in informal caregivers caring for persons with dementia living at home – A follow-up cohort study
- 2020
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Ingår i: Dementia. - London : Sage Publications. - 1471-3012 .- 1741-2684. ; 9:3, s. 640-660
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Tidskriftsartikel (refereegranskat)abstract
- Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers’ negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers’ negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care. © 2018, The Author(s) 2018.
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| 7. |
- Lethin, Connie, et al.
(författare)
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Psychological well-being over time among informal caregivers caring for persons with dementia living at home
- 2017
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Ingår i: Aging & Mental Health. - Abingdon, Oxon : Informa UK Limited. - 1360-7863 .- 1364-6915. ; 21:11, s. 1138-1146
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate informal caregivers’ psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. Method: A cohort study at baseline and 3 months’ follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers’ psychological well-being. Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers’ psychological well-being, and provide proper care and treatment for caregivers and PwDs.
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| 8. |
- Rahm Hallberg, Ingalill, et al.
(författare)
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Dementia care in eight European Countries : developing a mapping system to explore systems
- 2013
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Ingår i: Image - the Journal of Nursing Scholarship. - Oxford : Elsevier. - 0743-5150 .- 1527-6546 .- 1547-5069. ; 45:4, s. 412-424
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: There is a knowledge gap with regard to the structure of the care and service system available to persons with dementia. This is very much a concern for nurses who are the main providers in the care of dementia. The study, a part of the "RightTimePlaceCare" project, describes the development and content of a mapping system aimed at exploring the content of care and service for persons with dementia and their informal caregiver throughout the disease trajectory. The usefulness of the mapping system is illustrated in describing the availability of care and service at the diagnostic stage, and at the institutional and palliative stages.Design: A descriptive cross-country design concerning eight European countries differing in demographic composition and terms of long-term care provided is employed.Methods: A modified consensus strategy was used to develop the mapping system and define the terminology. Thereafter, each country ' s mapping systemwas completed by its research group collecting country-specific information and using expert groups either as consultants or for completing the system.Findings: The consensus procedure worked satisfactorily with regard to content and definitions, whereas assessing the availability and utilization of care and service was problematic. Some 50 types care and service activities were identified and defined and were categorized as follows: (a) screening, diagnostic procedures, and treatment of dementia; (b) outpatient care facilities; (c) care at home; (d) institutional care; (e) palliative care; (f) informal caregiving and supportive actions; and (g) civic activities. Care at home included the broadest range of activities; palliative care, informal caregiving, and supportive actions were the smallest range.Conclusions: The dementia care systems were found to be comprehensive and to emphasize home care. Activities aimed at transferring knowledge to informal caregivers, though highly important for home care, seemed less extensive. The mapping system appears useful from a nurse manager's standpoint for exploring the dementia care pathway. Comparisons between countries appear useful for developing the care system and for sharing information of how toperfect it. Further testing and development are needed regarding information on the availability and utilization of care and service activities.Clinical Relevance: The mapping system can be useful in clarifying the dementia care system for those concerned, in helping nurse researchers and managers review and initiate evaluation and communicate with policy makers, as well as to ensure that providers use appropriate parts of the system. It can also be useful in national and international comparative studies. © 2013 Sigma Theta Tau International.
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| 9. |
- Rahm Hallberg, Ingalill, et al.
(författare)
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Professional care providers in dementia care in eight European countries; their training and involvement in early dementia stage and in home care
- 2016
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Ingår i: Dementia. - London : Sage Publications. - 1471-3012 .- 1741-2684. ; 15:5, s. 931-957
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Tidskriftsartikel (refereegranskat)abstract
- Knowledge concerning professionals involved in dementia care throughout its trajectory is sparse; the focus has mainly been on nursing-homecare and less on home care, diagnosis and treatment of the disease and its complications despite the fact that home care is the most prominent type of care. The aim of this study was to explore and describe professional care providers involved in dementia care and their educational level applying the International Standard Classification of Education (ISCED) and further to investigate practice in the RightTimePlaceCare-countrieswith regard to screening, diagnostic procedures and treatment of dementia and home care. The findings demonstrate more similarities than differences in terms of type of professionals involved among the countries although untrained staff were more common in some countries. Findings also show that many types of professionals are involved, who to turn to may not be clear, for instance in terms of medical specialities and it may be unclear who bears the ultimate responsibility. The professionals involved in diagnosis, treatment and care are educated to bachelor's level or above whilst everyday care is provided by people trained at a lower ISCED level or with no formal training. Registered nurses as well as occupational therapists have bachelor's degrees in most countries, but not in Germany or Estonia. Professionals specifically trained in dementia care are not so common. Further research is needed to reveal not only who provides the diagnostics and treatment, but also how home care is organised and quality assured. Many different types of professionals serve as providers along the trajectory of the disease which may be difficult for the patient and the informal caregiver to cope with. © The Author(s) 2014
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| 10. |
- Tucker, Sue, et al.
(författare)
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What Makes Institutional Long-Term Care the Most Appropriate Setting for People With Dementia? Exploring the Influence of Client Characteristics, Decision-Maker Attributes, and Country in 8 European Nations
- 2016
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Ingår i: Journal of the American Medical Directors Association. - Philadelphia : Elsevier BV. - 1525-8610 .- 1538-9375. ; 17:5, s. 9-465
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Tidskriftsartikel (refereegranskat)abstract
- To explore the extent to which client characteristics, decision-maker attributes, and country influence judgments of institutional long-term care (ILTC) appropriateness for people with dementia. Design, setting, and participants: A total of 161 experts in dementia care from 8 European countries reviewed a series of 14 vignettes representing people with dementia on the cusp of ILTC admission and indicated the most appropriate setting in which to support each case in a simple discrete choice exercise: own home, very sheltered housing, residential home, or nursing home. At least 16 experts participated in each country (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom). Measurements: Descriptive statistics were used to characterize the experts and their placement preferences. Logistic regression modeling was used to explore the extent to which the sociodemographic and clinical characteristics of people with dementia, and the profession, workplace, and country of decision-makers were associated with ILTC recommendation. Results: Client characteristics, decision-maker attributes, and country all seemed to play a part in influencing professionals' perceptions of the appropriateness of ILTC for people with dementia. Expert decision-makers were more likely to recommend ILTC for individuals who required help with mobility or had multiple care needs, and appeared to give more weight to carers' than clients' wishes. Community-based social workers were less likely than other professional groups to favor ILTC placement. Experts in Finland, Germany, and the United Kingdom were less likely to recommend ILTC than experts in France, the Netherlands, and Estonia; experts in Sweden and Spain took an intermediate position. Conclusion: This study provides new understanding of the factors that shape professionals' perceptions of ILTC appropriateness and highlights the need to construct multifaceted models of institutionalization when planning services for people with dementia. It also has several important clinical implications (including flagging interventions that could decrease the need for ILTC), and provides a basis for enhancing professionals' decision-making capabilities (including the greater involvement of clients themselves).
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