| 1. |
- 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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| 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. |
- 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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| 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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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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| 7. |
- 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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