Christina Bökberg

Best practice and needs for improvement in the chain of care for persons with dementia in Sweden : a qualitative study based on focus group interviews

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 the chain of care and Next-of-kin participation is a prerequisite for continuity in the chain of care. It was clear that, according to the participants, best practice in dementia care in Sweden is not achieved in every respect. It appeared that transitions of care between different organizations are critical events which need to be improved. The further the disease progresses, the less collaboration there seems to be among professional care providers, which is when the next of kin are usually called upon to maintain continuity in the chain of care.ConclusionsThe results indicate that, according to the care providers, best practice in terms of collaboration is achieved to a higher degree during the early stage of dementia compared with the moderate and end-of-life stages. Lack of best practice strategies during these stages makes it difficult to meet the needs of persons with dementia and reduce the burden for next of kin. These are experiences to be taken into account to improve the quality of dementia care. Implementation research is needed to develop strategies for best practice on the basis of national knowledge-based guidelines and to apply these strategies in the moderate and end-of-life stages.

Care and services at home for persons with dementia. Structure, process, and outcomes.

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 content analysis. The results indicated that best practice in terms of collaboration was achieved to a higher degree during the early stage compared with the moderate and end-of-life stages of the disease. Lack of best practice strategies during these stages made it difficult to meet the needs of persons with dementia and reduce burden on informal caregivers. A cross-sectional study design was used in studies III and IV. Questionnaire-based interviews were conducted with 177 persons with dementia and their informal caregivers. Data were analysed using descriptive and comparative statistics. Study III compared persons with dementia with different levels of cognitive impairment, regarding utilization of formal and informal care and services at home. The results showed that needs relating to ADLs and supervision appear to be met first and foremost by the informal caregivers, since the utilization of formal care and services was lower than utilization of informal care. Study IV described self-reported quality of life, different aspects of quality of care and the significance of quality of care for quality of life . The results revealed that pain significantly lowered quality of life in the dimensions behavioural competence and psychological wellbeing, compared with absence of pain. Satisfaction with received care seemed to have a positive effect on quality of life . The overall quality of life was perceived to be high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Altogether 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling. The thesis is inspired by Lawtons press-competence model, which provided a deeper understanding of the results and the context of the research. (Less)