| 1. |
- Afonso-Argilés, F. Javier, et al.
(författare)
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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
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Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 20:1
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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)
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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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| 3. |
- Beerens, Hanneke C., et al.
(författare)
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Change in quality of life of people with dementia recently admitted to long-term care facilities
- 2015
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1435-1447
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Tidskriftsartikel (refereegranskat)abstract
- AimTo assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. BackgroundMany people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. DesignAn observational and longitudinal survey. MethodsData on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. ResultsBetter cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. ConclusionCognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization.
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| 4. |
- Beerens, Hanneke C., et al.
(författare)
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Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study
- 2014
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Ingår i: Journal of the American Medical Directors Association. - : Elsevier BV. - 1525-8610. ; 15:1, s. 54-61
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC. Design: Cross-sectional survey. Setting: Institutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden). Participants: PwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted. Measurements: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13-52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers). Results: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such away that certain countries or settings scored "higher" or "lower." The presence of depressive symptoms was most consistently associated with lower QoL (P <= .001). Conclusion: There is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended. Copyright (C) 2014 - American Medical Directors Association, Inc.
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| 5. |
- Bremer, Patrick, et al.
(författare)
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Informal and formal care : Substitutes or complements in care for people with dementia? Empirical evidence for 8 European countries
- 2017
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Ingår i: Health Policy. - : Elsevier BV. - 0168-8510. ; 121:6, s. 613-622
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Tidskriftsartikel (refereegranskat)abstract
- Background: In order to contain public health care spending, European countries attempt to promote informal caregiving. However, such a cost reducing strategy will only be successful if informal caregiving is a substitute for formal health care services. We therefore analyze the effect of informal caregiving for people with dementia on the use of several formal health care services. Study design: The empirical analysis is based on primary data generated by the EU-project ´RightTimePlaceCare` which is conducted in 8 European countries. 1223 people with dementia receiving informal care at home were included in the study.
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| 6. |
- Bremer, Patrick, et al.
(författare)
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Informal dementia care: Consequences for caregivers' health and health care use in 8 European countries.
- 2015
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Ingår i: Health Policy. - : Elsevier BV. - 1872-6054 .- 0168-8510. ; 119:11, s. 1459-1471
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Tidskriftsartikel (refereegranskat)abstract
- Informal (dementia) care has economic consequences throughout the health care system. Whilst the health and wellbeing of the care recipient might improve, the health of the caregiver might also change, typically for the worse. Therefore, this analysis aims to examine the association between caregiving intensity and caregivers' health and health care utilization.
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| 7. |
- Bökberg, Christina, et al.
(författare)
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Care and Service at Home for People With Dementia in Europe
- 2015
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Ingår i: Abstractbook Nordic Conference on Advances in Health Care Sciences Research. ; , s. 22-22
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Konferensbidrag (refereegranskat)abstract
- Purpose: To describe available and utilized professional care and service at home for people with dementia, from diagnosis to end-of-life stage, in eight European countries. Design: A descriptive cross-country design concerning eight European countries as a part of the European research project, RightTimePlaceCare (RTPC).Methods: The research team in each country used a mapping system to collect countryspecific information on a general level concerning dementia care and service system. The mapping system consisted of fifty types of care and service activities. Sixteen of the fifty predefined activities concerning professional care and service at home were selected for this study and subdivided into three categories, following the stages of dementia.Results: Availability was reported to be higher than utilization and the results indicated more similarities than differences among the eight countries involved. Even though there were several available activities of Basic care and services and Health care interventions they were utilized by few in most countries. Furthermore, Specialized care and services for people with dementia were sparsely available and even more sparsely utilized in the participating countries.Conclusions: The results indicated that people with dementia in Europe received professional care and service on a general, basic level but seldom received care and service adjusted to their specific needs.Clinical Relevance: This study highlights available and utilized types of care and service activities enabling nurses to develop individually adjusted care plans for people with dementia during the progress of the disease. Knowledge of care and services in other countries provides nurses with an important tool for the improvement of dementia care. However assessing the quality of care requires an indication of informal care provision in different countries.
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| 8. |
- 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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| 9. |
- Cabrera, Esther, et al.
(författare)
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Non-pharmacological interventions as a best practice strategy in people with dementia living in nursing homes : A systematic review
- 2015
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Ingår i: European Geriatric Medicine. - Oxford : Elsevier BV. - 1878-7649 .- 1878-7657. ; 6:2, s. 134-150
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Tidskriftsartikel (refereegranskat)abstract
- Background: Two-thirds of nursing home residents suffer from dementia and there is a need for effective and efficient interventions with meaningful outcomes for these individuals. This study aims to identify current best practices in non-pharmacological interventions in nursing homes.Methods: A systematic literature review was conducted, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) declaration guideline. Studies and Randomized Controlled Trials (RCT) evaluating non-pharmacological interventions focused on improving the Quality of Care (QoC) and/or Quality of Life (QoL) of people with dementia (PwD) living in nursing homes were included. For individual study evaluation, the Cochrane Collaboration risk of bias assessment tool was used.Results: A total of 31 articles were included and five main categories emerged: psychosocial and educational, physical activity, sensorial therapies, staff-focused interventions and complex interventions. Psychosocial interventions were the most exhaustively studied and evaluated interventions. Few studies related to physical therapy were identified and they did not provide enough evidence of their effectiveness. Therapeutic touch was revealed to have positive effects on residents with dementia.Conclusion: Psychosocial interventions have been shown to have the potential to improve the QoL and QoC of people with dementia in nursing homes. Before implementation of the intervention, it is recommended that activities are adjusted according to residents' characteristics and external factors controlled to achieve effectiveness and to structure a well-designed intervention. However, there is not enough evidence to support the effectiveness of non-pharmacological interventions in general. Further well-designed research is needed on non-pharmacological interventions in nursing facilities. (C) 2014 Elsevier Masson SAS and European Union Geriatric Medicine Society. All rights reserved.
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| 10. |
- Costa, Nadège, et al.
(författare)
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Costs of Care of Agitation Associated With Dementia in 8 European Countries : Results From the RightTimePlaceCare Study
- 2018
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Ingår i: Journal of the American Medical Directors Association. - : Elsevier BV. - 1525-8610 .- 1538-9375. ; 19:1, s. 1-95
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Tidskriftsartikel (refereegranskat)abstract
- Objective To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries. Design Cross-sectional data from the RightTimePlaceCare cohort. Setting HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England). Participants A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers. Main Outcome Measures Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q). Results Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P =.01 and.02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P <.05). Conclusion This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.
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| 11. |
- 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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| 12. |
- Giebel, Clarissa, et al.
(författare)
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Depressive symptomatology and associated factors in dementia in Europe: home care versus long-term care.
- 2016
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Ingår i: International Psychogeriatrics. - 1741-203X. ; 28:4, s. 621-630
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Tidskriftsartikel (refereegranskat)abstract
- This study forms part of a larger European programme investigating the transition from home care to long-term care (LTC) facility in people with dementia (PwD) at the margins of LTC. The aim of this study was to explore the factors associated with depressive symptomatology in PwD in different settings.
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| 13. |
- Giebel, Clarissa M, et al.
(författare)
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Depressive symptomatology in severe dementia in a European sample: prevalence, associated factors and prescription rate of antidepressants.
- 2015
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Ingår i: International Psychogeriatrics. - 1741-203X. ; 27:4, s. 657-667
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Tidskriftsartikel (refereegranskat)abstract
- ABSTRACT Background: Depression is a common comorbid disorder of dementia. This study explores the prevalence of and factors associated with depressive symptomatology, and antidepressant prescription rates in severe dementia across eight European countries. Methods: In total, 414 people with severe dementia completed measures of cognition and quality of life (QoL), whilst carers completed proxy measures of activities of daily living (ADLs), depression, neuropsychiatric symptoms, QoL and comorbidity. Results: Findings indicated that 30% of the sample had depression, whilst the highest and lowest prevalence of depression was reported in Germany and Finland, respectively. Lower QoL, the presence of pain and more frequent neuropsychiatric symptoms were associated with depressive symptomatology, whilst no significant relationship between impairment of ADLs, comorbidity, and depression emerged. Spain and Estonia had the highest and lowest rates of antidepressant prescribing, respectively, whilst Germany had the highest discrepancy between depressive symptomatology and prescription. Conclusions: The study highlights variations across countries in the prevalence of depressive symptomatology in severe dementia and prescription of antidepressants. Information about factors associated with depressive symptomatology may help to better identify and manage depression.
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| 14. |
- Hallberg, Ingalill R, et al.
(författare)
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The dementia care system in the eight RTPC European countries
- 2013
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Ingår i: The Journal of Nutrition, Health & Aging. - Heidelberg : Springer. - 1279-7707 .- 1760-4788. ; 17:Suppl. 1, s. S212-S212
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Exploring the care and service activities offered throughout the trajectory of dementia is an opportunity for countries to learn from each other. As part of the RightTimePlaceCare project’s general objective to develop best practice strategies this presentation describes development, content and application of a template to explore the dementia health, social care and welfare systems from early sign, diagnosis, intermediate and moderate stage and to the late stage of the disease. It also describes some of the findings with regard to the chain of care and service for people with dementia.Method: A step-wise consensus procedure was applied to identify, define and develop a template covering care and service throughout the disease trajectory. In addition the professionals involved were identified and defined as for their educational level.Results: In total 50 care and service activities compiled in seven groups were identified: 1) Screening, diagnostic procedure, treatment of dementia and complications; 2) Outpatient care facilities; 3) Care at home; 4) Institutional care; 5) Palliative care; 6) Informal caregiving and support; 7) Civic activities. The largest differences in terms of availability were found for care activities specifically for people with dementia. Non-pharmacological treatment was not commonly utilized in whilst pharmacological treatment for BPSD was common. Also education and social support to family caregivers was sparsely utilized.Conclusion: The care and service offered to people with dementia and family caregivers covers a wide range of activities. Facilities specifically for dementia varies among countries.There are more similarities among countries than differences.
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| 15. |
- Holmstrand, Cecilia, et al.
(författare)
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Associated factors of suicidal ideation among older persons with dementia living at home in eight European countries
- 2021
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Ingår i: Aging & Mental Health. - : Informa UK Limited. - 1364-6915 .- 1360-7863. ; 25:9, s. 1730-1739
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: This study aimed to investigate the occurrence of suicidal ideation and associated factors in older persons with dementia living at home in eight European countries, and its association with quality of life. Furthermore, changes in suicidal ideation over time were investigated. Methods: This cohort study (n = 1,223) was part of the European “RightTimePlaceCare” project conducted in 2010–2013. Participating countries were Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden and the United Kingdom. Baseline and follow-up data were analysed using bivariate and multivariate logistic regression. Results: The occurrence of suicidal ideation in the participating countries varied between 6% and 24%. Factors significantly (p < 0.0018) associated with suicidal ideation using bivariate analysis were: nationality, depressive symptoms, delusions, hallucinations, agitation, anxiety, apathy, disinhibition, irritability, night-time behaviour disturbances, anxiolytics and anti-dementia medication. In the multivariate regression analysis, country of origin, moderate stage of the dementia, depressive and delusional symptoms, and anti-dementia medication were significantly associated with suicidal ideation (p < 0.05). Over time, suicidal ideation decreased from severe to mild or became absent in 54% of the persons with dementia. Conclusion: It is essential that professionals identify older persons with dementia and suicidal ideation and depressive and other psychological symptoms in order to give them appropriate treatment and provide relief for their informal caregivers. We emphasize the importance of identifying suicidal ideation, irrespective of depressive symptoms, and specifically of paying attention to persons with moderate dementia. Living with the informal caregiver seems to be associated with staying stable without suicidal ideation.
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| 16. |
- Karlsson, Staffan, 1959-, et al.
(författare)
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Dementia care in eight European countries from the perspective of recipients and their caregivers
- 2015
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Ingår i: Abstract Booklet. ; , s. 318-318
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Konferensbidrag (refereegranskat)abstract
- Objectives: To investigate persons with dementia and their informal caregivers’ views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countriesMethods: 137 persons with dementia and their informal caregivers participated in focus group interviews. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers.Results: The core nding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organisation to contact. Professional knowledge and commitment, variation in service, and care adapted to needs were important.Conclusion: As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a speci c person or organisation to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver.
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| 17. |
- 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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| 18. |
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| 19. |
- 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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| 20. |
- Lethin, Connie, et al.
(författare)
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Formal support for informal caregivers to persons with dementia through the trajectory of the disease in eight European countries
- 2015
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Ingår i: Abstract Booklet. ; , s. 237-237
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Konferensbidrag (refereegranskat)abstract
- Objectives: In European countries knowledge about availability and utilisation of support for informal caregivers caring for older person with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system forinformal caregivers to a PwD, a survey of European support systems and professional providers could serve as a knowledge base and enable European countries to learn from each other.The aim was to explore support for informal caregivers to PwD in terms of availability and utilisation, and to explore professional care providers and their educational levels involved in the support for informal caregivers to PwD through the trajectory of disease across eight European countries.Methods: A mapping system aiming to explore care and service for PwD and informal caregivers in eight European countries was used (Hallberg et al., 2013) to gather information about availability, utilisation and providers of support to informal caregivers caring for PwD.Results: Counselling, caregiver support and education where the support activities that had high availability in the diagnose stage to the intermediate stage with a decrease in late to end of life stage. Utilization was low with a small increase in the intermediate stage. Day care and respite care at home had high availability in the diagnose stage to the intermediate stage with a decrease in the late to end of life stage, utilized by no one or few through all stages. Professionals specialised in dementia (Bachelor to Master degree) provided counselling, education while caregiver support for informal caregivers and day care, respite care and respite care at home as relief for informal caregivers was provided by professionals from upper secondary school to a master degree.Conclusion: Availability and utilisation of support for informal caregivers appears to be related to each countries care and support systems. Countries with National guidelines for PwD and informal caregivers seemed to be more aware about the importance of professionals specialised in dementia in the support.
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| 21. |
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| 22. |
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| 23. |
- Lethin, Connie, et al.
(författare)
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Prevalence of dementia diagnosis not otherwise specified in eight European countries A cross-sectional cohort study
- 2019
-
Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 19:1
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundDementia is a syndrome, with a wide range of symptoms. It is important to have a timely diagnosis during the disease course to reduce the risk of medication errors, enable future care planning for the patient and their relatives thereby optimizing quality of life (QoL). For this reason, it is important to avoid a diagnosis of dementia not otherwise specified (DNOS) and instead obtain a diagnosis that reflects the underlying pathology. The aim of this study was to investigate the prevalence and associated factors of DNOS in persons with dementia living at home or in a nursing home.MethodsThis is a cross-sectional cohort study performed in eight European countries. Persons with dementia aged ≥65 years living at home (n = 1223) or in a nursing home (n = 790) were included. Data were collected through personal interviews with questionnaires based on standardised instruments. Specific factors investigated were sociodemographic factors, cognitive function, and mental health, physical health, QoL, resource utilization and medication. Bivariate and backward stepwise multivariate regression analyses were performed.ResultsThe prevalence of DNOS in the eight participating European countries was 16% (range 1–30%) in persons living at home and 21% (range 1–43%) in persons living in a nursing home. These people are more often older compared to those with a specific dementia diagnosis. In both persons living at home and persons living in a nursing home, DNOS was associated with more severe neuropsychiatric symptoms and less use of anti-dementia medication. In addition, persons with DNOS living at home had more symptoms of depression and less use of antidepressant medication.ConclusionsThe prevalence of DNOS diagnosis is common and seems to vary between European countries. People with DNOS are more often older with more severe neuropsychiatric symptoms and receive fewer anti-dementia medication, anxiolytics and antidepressants. This would support the suggestion that a proper and specific diagnosis of dementia could help the management of their disease.
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| 24. |
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| 25. |
- 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: Innovation in Aging. - Oxford : Oxford University Press. - 2399-5300. ; 1, s. 1381-1381
-
Tidskriftsartikel (refereegranskat)abstract
- This study investigated informal caregivers’ psychologi- cal 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. This was a cohort study, at baseline and follow-up in eight European countries. Caregivers included (n=1,223) were caring for PwDs aged ≥ 65 years living at home, in risk of being institutionalized. Data was collected using standard- ized instruments. Logistic regression analysis of factors asso- ciated with caregiver psychological well-being at baseline and 3 months later was performed. Factors associated with presence of 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 and few neuropsychiatric symptoms for the PwD. At follow-up, caregivers with increased psychologi- cal well-being experienced quality of care (QoC) higher and were more often using dementia speci c service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiv- ing, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiat- ric symptoms. Higher QoC predicted increased caregivers’ psychological well-being. It can be concluded that informal caregiving for PwDs living at home is a complex task. Our study showed that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neu- ropsychiatric symptoms that might affect caregivers’ psycho- logical well-being, and provide proper care and treatment for caregivers and PwDs.
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| 26. |
- Lethin, Connie, et al.
(författare)
-
Psychological well-being over time among informal caregivers caring for persons with dementia living at home
- 2017
-
Ingår i: Aging & Mental Health. - Abingdon, Oxon : Informa UK Limited. - 1360-7863 .- 1364-6915. ; 21:11, s. 1138-1146
-
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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| 27. |
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| 28. |
- Michel, Bleijlevens, et al.
(författare)
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Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study
- 2015
-
Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1378-1391
-
Tidskriftsartikel (refereegranskat)abstract
- Abstract Aims. To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care. Background. Country differences in the experience of burden and health-related quality of life are rarely described. Design. Prospective cohort study. Methods. Data on burden and health-related quality of life were collected at baseline (conducted between November 2010–April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home care. Statistical analyses focused on descriptive comparisons between groups and countries. Results. Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up. Conclusion. Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being.
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| 29. |
- Renom-Guiteras, Anna, et al.
(författare)
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Potentially inappropriate medication among people with dementia in eight European countries
- 2018
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Ingår i: Age and Ageing. - : Oxford University Press (OUP). - 0002-0729 .- 1468-2834. ; 47:1, s. 68-74
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: to evaluate the frequency of potentially inappropriate medication (PIM) prescription among older people with dementia (PwD) from eight countries participating in the European study 'RightTimePlaceCare', and to evaluate factors and adverse outcomes associated with PIM prescription.Methods: survey of 2,004 PwD including a baseline assessment and follow-up after 3 months. Interviewers gathered data on age, sex, prescription of medication, cognitive status, functional status, comorbidity, setting and admission to hospital, fall-related injuries and mortality in the time between baseline and follow-up. The European Union(7)-PIM list was used to evaluate PIM prescription. Multivariate regression analysis was used to investigate factors and adverse outcomes associated with PIM prescription.Results: overall, 60% of the participants had at least one PIM prescription and 26.4% at least two. The PIM therapeutic subgroups most frequently prescribed were psycholeptics (26% of all PIM prescriptions) and 'drugs for acid-related disorders' (21%). PwD who were 80 years and older, lived in institutional long-term care settings, had higher comorbidity and were more functionally impaired were at higher risk of being prescribed two PIM or more. The prescription of two or more PIM was associated with higher chance of suffering from at least one fall-related injury and at least one episode of hospitalisation in the time between baseline and follow-up.Conclusions: PIM use among PwD is frequent and is associated with institutional long-term care, age, advanced morbidity and functional impairment. It also appears to be associated with adverse outcomes. Special attention should be paid to psycholeptics and drugs for acid-related disorders.
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| 30. |
- Risco, Ester, et al.
(författare)
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The association between physical dependency and the presence of neuropsychiatric symptoms, with the admission of people with dementia to a long-term care institution : A prospective observational cohort study
- 2015
-
Ingår i: International Journal of Nursing Studies. - London : Elsevier. - 0020-7489 .- 1873-491X. ; 52:5, s. 980-987
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Tidskriftsartikel (refereegranskat)abstract
- Background: Dementia is a progressive neurological disorder that causes a high degree of dependency. This dependency has been defined as an increased need for assistance due to deterioration in cognition and physicalfunctioning, and changes in behavior. Highly dependent people with dementia are more likely to be institutionalized.Objectives: To investigate the association between specific categories of physical dependency and the presence ofneuropsychiatric symptoms in people with dementia admitted to a long-term care institution.Design: A prospective observational cohort study.Settings: Home care and long-term care institutions in eight European countries.Participants: People with dementia living at home but at risk of institutionalization and recently institutionalized people with dementia.Method: Baseline and 3-month follow-up interviews were performed between November, 2010 and April, 2012. Thesample consisted of 116 recently institutionalized dementia sufferers and 949 people with dementia still living at home. Physical dependency was measured using the Katz Activity of Daily Living index, and neuropsychiatric symptoms were assessed through The Neuropsychiatric Inventory. Specific categories of dependency were analyzed by performing a logistic regression analysis. This followed examination of baseline characteristics to define the degree of physicaldependency, as factors associated with institutionalization, and evaluation of the same characteristics at 3-month follow-up to detect changes in the degree of physical dependency and neuropsychiatric symptoms associated with recent admission to a long-term care institution.Results: Toileting, dressing and continence dependency was higher in institutionalized people than in those receiving home-care. Delusion, hallucination, agitation, anxiety, apathy, motor-disturbances, night-time behavior and eating disorders were also worse in the institutionalized. Logistic regression analysis showed that independent factors significantly associated with being recently institutionalized were toileting (odds ratio = 2.3; 95% confidence interval = 1.43-3.71) and motor disturbances (odds ratio = 1.81; 95% confidence interval = 1.15-2.87).Conclusions: This study supports the association between type and degree of physical dependency in people with dementia and long-term institutionalization. Institutionalization is associated with physical dependency and the presenceof neuropsychiatric symptoms. (C) 2015 Elsevier Ltd. All rights reserved.
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| 31. |
- Roller-Wirnsberger, Regina, et al.
(författare)
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European postgraduate curriculum in geriatric medicine developed using an international modified Delphi technique
- 2019
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Ingår i: Age and Ageing. - : Oxford University Press (OUP). - 1468-2834 .- 0002-0729. ; 48:2, s. 291-299
-
Tidskriftsartikel (refereegranskat)abstract
- Background: the European Union of Medical Specialists (UEMS-GMS) recommendations for training in Geriatric Medicine were published in 1993. The practice of Geriatric Medicine has developed considerably since then and it has therefore become necessary to update these recommendations.Methods: under the auspices of the UEMS-GMS, the European Geriatric Medicine Society (EuGMS) and the European Academy of Medicine of Ageing (EAMA), a group of experts, representing all member states of the respective bodies developed a new framework for education and training of specialists in Geriatric Medicine using a modified Delphi technique. Thirty-two expert panel members from 30 different countries participated in the process comprising three Delphi rounds for consensus. The process was led by five facilitators.Results: the final recommendations include four different domains: 'General Considerations' on the structure and aim of the syllabus as well as quality indicators for training (6 sub-items), 'Knowledge in patient care' (36 sub-items), 'Additional Skills and Attitude required for a Geriatrician' (9 sub-items) and a domain on 'Assessment of postgraduate education: which items are important for the transnational comparison process' (1 item).Conclusion: the current publication describes the development of the new recommendations endorsed by UEMS-GMS, EuGMS and EAMA as minimum training requirements to become a geriatrician at specialist level in EU member states.
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| 32. |
- Römhild, Josephine, et al.
(författare)
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Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale : Secondary analysis of RightTimePlaceCare data
- 2018
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Ingår i: Health and Quality of Life Outcomes. - 1477-7525. ; 16:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement. Methods: Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis. Results: The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings. Conclusions: Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.
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| 33. |
- Saks, Kai, et al.
(författare)
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Most appropriate placement for people with dementia: individual experts' vs. expert groups' decisions in eight European countries
- 2015
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Ingår i: Journal of Advanced Nursing. - Chichester : Wiley-Blackwell Publishing Inc.. - 0309-2402 .- 1365-2648. ; 71:6, s. 1363-1377
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Tidskriftsartikel (refereegranskat)abstract
- Aims: To investigate the extent of variability in individuals' and multidisciplinary groups' decisions about the most appropriate setting in which to support people with dementia in different European countries. Background: Professionals' views of appropriate care depend on care systems, cultural background and professional discipline. It is not known to what extent decisions made by individual experts and multidisciplinary groups coincide. Design: A modified nominal group approach was employed in eight countries (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden and the UK) as part of the RightTimePlaceCare Project. Methods: Detailed vignettes about 14 typical case types of people with dementia were presented to experts in dementia care (n = 161) during November and December 2012. First, experts recorded their personal judgements about the most appropriate settings (home care, assisted living, care home, nursing home) in which to support each of the depicted individuals. Second, participants worked in small groups to reach joint decisions for the same vignettes. Results: Considerable variation was seen in individuals' recommendations for more than half the case types. Cognitive impairment, functional dependency, living situation and caregiver burden did not differentiate between case types generating high and low degrees of consensus. Group-based decisions were more consistent, but country-specific patterns remained. Conclusions: A multidisciplinary approach would standardize the decisions made about the care needed by people with dementia on the cusp of care home admission. The results suggest that certain individuals could be appropriately diverted from care home entry if suitable community services were available. © 2014 John Wiley & Sons Ltd.
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| 34. |
- Stephan, Astrid, et al.
(författare)
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Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals.
- 2015
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402. ; 71:6, s. 1392-1404
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. BACKGROUND: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012). METHODS: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). RESULTS: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. CONCLUSION:Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.
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| 35. |
- Sutcliffe, Caroline, et al.
(författare)
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Caring for a Person With Dementia on the Margins of Long-Term Care : A Perspective on Burden From 8 European Countries
- 2017
-
Ingår i: Journal of the American Medical Directors Association. - : Elsevier BV. - 1525-8610. ; 18:11, s. 1-973
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. Design: Cross-sectional study. Setting: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). Participants: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. Measurements: Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. Results: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. Conclusion: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.
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| 36. |
- 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
-
Ingår i: Journal of the American Medical Directors Association. - Philadelphia : Elsevier BV. - 1525-8610 .- 1538-9375. ; 17:5, s. 9-465
-
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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| 37. |
- Verbeek, Hilde, et al.
(författare)
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A European study investigating patterns of transition from home care towards institutional dementia care: the protocol of a RightTimePlaceCare study
- 2012
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Ingår i: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 12:68
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Tidskriftsartikel (refereegranskat)abstract
- Background: Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected. Methods/design: This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e. g. quality of life, quality of care), informal caregivers (e. g. caregiver burden, quality of life) and costs (e. g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons. Discussion: The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services.
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| 38. |
- Verbeek, Hilde, et al.
(författare)
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Inter-country exploration of factors associated with admission to long-term institutional dementia care: evidence from the RightTimePlaceCare study
- 2015
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Ingår i: Journal of Advanced Nursing. - Chichester : Wiley. - 0309-2402 .- 1365-2648. ; 71:6, s. 1338-1350
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Tidskriftsartikel (refereegranskat)abstract
- AimTo explore inter-country variation of factors associated with institutionalization of people with dementia. BackgroundThere is an urgent need for evidence on whether factors associated with admission to institutional dementia care are applicable across healthcare systems, as increasing evidence suggests that these factors could be country-specific. DesignA prospective cohort study. MethodPrimary data were collected in eight European countries, at baseline and after 3months follow-up (November 2010-April 2012). The sample included 2014 dyads of people with dementia and their informal caregivers; 791 patients were recently institutionalized, 1223 patients lived at home and were at risk of institutionalization. Associations between care setting (institution vs. home) and factors shown to influence institutionalization (e.g. cognition, independence in activities of daily life, behaviour) were studied. ResultsConsiderable differences were found between the eight countries in characteristics of people with dementia who had been recently admitted to ILTC. However, caregiver burden appeared the most consistent factor associated with institutionalization in all analyses. Indications for the importance of independence in activities of daily life were found as well, although country differences may be more prominent for this factor. ConclusionEvidence was found for two common factors, crucial in the process of institutionalization across countries: caregiver burden and independency in activities of daily life. However, this study also suggests that admission to institutional dementia care is context-specific, as wide variation exists in factors associated with institutionalization across countries. Tailored best-practice strategies are needed to reflect variations in response to these needs.
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| 39. |
- Wuebker, Ansgar, et al.
(författare)
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Costs of care for people with dementia just before and after nursing home placement: primary data from eight European countries
- 2015
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Ingår i: European Journal of Health Economics. - Heidelberg : Springer Science and Business Media LLC. - 1618-7601 .- 1618-7598. ; 16:7, s. 689-707
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Tidskriftsartikel (refereegranskat)abstract
- Dementia is the most common cause of functional decline among elderly people and is associated with high costs of national healthcare in European countries. With increasing functional and cognitive decline, it is likely that many people suffering from dementia will receive institutional care in their lifetime. To delay entry to institutional care, many European countries invest in home and community based care services. This study aimed to compare costs for people with dementia (PwD) at risk for institutionalization receiving professional home care (HC) with cost for PwD recently admitted to institutional long-term nursing care (ILTC) in eight European countries. Special emphasis was placed on differences in cost patterns across settings and countries, on the main predictors of costs and on a comprehensive assessment of costs from a societal perspective. Interviews using structured questionnaires were conducted with 2,014 people with dementia and their primary informal caregivers living at home or in an ILTC facility. Costs of care were assessed with the resource utilization in dementia instrument. Dementia severity was measured with the standardized mini mental state examination. ADL dependence was assessed using the Katz index, neuropsychiatric symptoms using the neuropsychiatric inventory (NPI) and comorbidities using the Charlson. Descriptive analysis and multivariate regression models were used to estimate mean costs in both settings. A log link generalized linear model assuming gamma distributed costs was applied to identify the most important cost drivers of dementia care. In all countries costs for PwD in the HC setting were significantly lower in comparison to ILTC costs. On average ILTC costs amounted to 4,491 Euro per month and were 1.8 fold higher than HC costs (2,491 Euro). The relation of costs between settings ranged from 2.4 (Sweden) to 1.4 (UK). Costs in the ILTC setting were dominated by nursing home costs (on average 94 %). In the HC setting, informal care giving was the most important cost contributor (on average 52 %). In all countries costs in the HC setting increased strongly with disease severity. The most important predictor of cost was ADL independence in all countries, except Spain and France where NPI severity was the most important cost driver. A standard deviation increase in ADL independence translated on average into a cost decrease of about 22 %. Transition into ILTC seems to increase total costs of dementia care from a societal perspective. The prevention of long-term care placement might be cost reducing for European health systems. However, this conclusion depends on the country, on the valuation method for informal caregiving and on the degree of impairment.
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| 40. |
- Zabalegui, Adelaida, et al.
(författare)
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Best practices interventions to improve quality of care of people with dementia living at home
- 2014
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Ingår i: Patient Education and Counseling. - Shannon : Elsevier. - 0738-3991 .- 1873-5134. ; 95:2, s. 175-184
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To identify effective interventions which improve quality of care for people with dementia (PwD) living at home.Methods: MEDLINE-(via PubMed), CINAHL, PsycINFO and ISI Web of Science databases were searched. Inclusion criteria: (1) randomized controlled trials; (2) published in English-language, peer-reviewed journals between 1990 and 2012; (3) evaluated strategies to improve quality of care for PwD cared at home; and (4) participants older than 65.Results: 23 studies met inclusion criteria. All the studies aimed to improve PwD quality of care and most of them focused on PwD caregivers. Psychoeducational programs are the most frequently assessed interventions and multicomponent interventions produced the most promising results.Conclusion: Due to the great variety of interventions describing specific samples and contexts, comparison of practice effectiveness is difficult. However, cognitive rehabilitation in PwD is effective when applied at an early stage of the disease. Case managers have demonstrated to reduce PwD institutionalization and the use of other community services. The studies were limited by sample heterogeneity, short follow-up or insufficiently detailed description.Practice implications: To improve PwD homecare, health professionals should educate and support caregivers. Before specific interventional recommendations can be made, further research addressing the limitations of current studies is needed.© 2014 Elsevier Ireland Ltd.
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