Professional care providers and stakeholders’ views of best practice in the care for persons with dementia in Sweden (original) (raw)
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BMC health services research, 2014
BackgroundPersons with dementia receive health care and social services from a wide range of professional care providers during the disease trajectory, presenting risks of miscommunication, duplication and/or missed nursing interventions. Accordingly, the aim of this study was to investigate professional care providers¿ views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden.MethodsThe study had a qualitative design based on three focus group interviews. A strategic sample of 23 professional care providers was included. Data were subjected to content analysis based on the three stages of dementia (early, moderate, end-of-life).ResultsThe results were divided into five categories: Diagnosis is a prerequisite for specialized dementia care, Creating routines in the chain of care, Competent staff a prerequisite for high-quality care, Day care facilitates transition in t...
Care and services at home for persons with dementia. Structure, process, and outcomes
2017
The overall aim of this thesis was to investigate formal care and services at home, regarding structure, process, and outcomes, for persons with dementia (aged 65+ years) at risk of nursing home admission. Availability and utilization of formal care and services at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries was described in study I. A mapping form was used to collect data. The results revealed that availability was reported to be higher than utilization, and indicated more similarities than differences among the countries involved. Dementia-specific care and services were sparsely available and even more sparsely utilized. Study II investigated formal care providers’ views on conditions for best practice in terms of collaboration and improvement needs in the chain of care from early to end-of-life stage for persons with dementia in Sweden. Three focus group interviews were conducted to collect data. Data were analysed using conte...
American journal of Alzheimer's disease and other dementias, 2015
The aim of this study is to identify the barriers and facilitators in dementia care with respect to information provision, communication, and collaboration from the perspectives of the person with dementia, family caregivers, and health care professionals over the course of the illness. A qualitative study using Focus-Group methodology was carried out in people with dementia, family caregivers, and health care providers. The categories that emerged from the analysis were insufficient information provided, specific dementia care needs, and acceptance of long-term care institutionalization from the people with dementia and caregivers' groups and insufficient communication between health care providers, differential information according to disease stage, and home care coordination from the health care providers' groups. The family is a key element in successful care coordination during dementia care provision. New effective strategies including self-management and emergent rol...
Journal of Advanced Nursing, 2014
Aim. The aim of the study was to investigate persons with dementia (PwD) and their informal caregiver's experiences of intersectorial information, communication and collaboration throughout the trajectory of dementia care in eight European countries. Design. Focus groups were applied in eight European countries; Estonia (EE), Finland (FI), France (FR), Germany (DE), The Netherlands (NL), Spain (ES), Sweden (SE) and United Kingdom (UK). Methods. Participants were 136 in total, and varied between 10 and 27 per country. Participants were PwD and informal caregivers. Structured interviews were provided in each country. Content analysis generated a tentative model of information, communication and collaboration to PwD and their caregivers and in a second step the categories and model was tested. Results. The core finding was that the primary focuses of information, communication and collaboration was the PwD and the family/informal caregivers. Entering and living through the trajectory of the disease and its consequences was emphasised to be an essential departure. The relation to the professional care was addressed to establishing a trusting relationship; the relational perspective and tailor-made and one person or organisation to turn to; the task perspective. Professional knowledge and commitment, and variation in service and care adapted to needs were important. Conclusion. Since focus was on the PwD and their informal caregivers seems family-centred care be well suited framework for dementia care. A trusting relationship and a specific person or organisation to turn to seems to be an indicator of best practice as well as adaptation to the needs of the PwD and the informal caregiver.
2021
Dementia is considered to be a significant cause of disability and dependency for older people worldwide and it raises difficulties in providing adequate formal and informal assistance. Research on the experience of long-term care (LTC)services for older people with dementia is scarce in Eastern European countries. This study aimed to understand the system of care for older people with dementia from the perspective of health and social care workers providing LTC services in Lithuania. A total of 72 primary health care and social care professionals from public and private institutions in Kaunas city participated in this study. One-to-one interviews were conducted with family physicians, community nurses, psychiatrists, psychiatric nurses, and social workers. A vignette situation of 2 fictitious patients with dementia and their informal caregiver was discussed during the interviews. Data were analyzed using thematic analysis by induction approach. The data revealed 2 main themes: LTC ...
Dementia, 2018
Growing old entails an increased risk of disabilities and illnesses such as dementia. The orientation in Sweden on national level is that individuals remain in their own homes if desired and receive person-centred home care. The aim of this study was to describe the experience of an educational program and its influence on daily provision of care to persons with dementia. A life-world approach was used. Data were collected through group interviews with care providers in the context of home. The findings are presented in five themes: Increased knowledge about dementia and treatment, Relationship-building in order to provide good care, Open and flexible approach conveys calm, Continuity and flexibility are cornerstones in the care and Perceived improvements. This person-centred educational intervention resulted in a care that was based on each individual’s personality, preferences and priorities in life. Education given with continuity over time is key to improving provision of care t...
Dementia, 2016
Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers' descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from eighteen indepth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions.
BMC Geriatrics, 2020
Background While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities. Methods Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenol...
Healthcare
The methodology from the “RightTimePlaceCare” study of dementia care was tested locally in terms of relevance, acceptability and attrition. Comparing persons with dementia (PwDs) receiving home care (HC) with PwDs living in nursing homes (NHs), in urban versus rural areas, regarding their health conditions and informal caregiver burden was also done. Standardized measurements regarding sociodemographic, and physical and mental health was used. Questions related to legal guardianship were added. Interviews were conducted with PwDs and their caregivers in HC (n = 88) and in NHs (n = 58). Bivariate and multivariate logistic regression analysis was used. The attrition rate was higher in HC. In the bivariate regression model, for HC and NH, living at home was significantly associated with more severe neuropsychiatric symptoms (p ≤ 0.001) and being cared by a spouse (p = 0.008). In NH, the informal caregivers were significantly younger (p = 0.003) and living in rural areas (p = 0.007) and...
Nurses' needs when collaborating with other healthcare professionals in palliative dementia care
Nurse education in practice, 2020
Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, ...