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

Abstract: 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 Lawton's press-competence model, which provided a deeper understanding of the results and the context of the research.