The mapping system can be useful in clarifying the dementia care system for those concerned, in helping nurse researchers and managers review and initiate evaluation and communicate with policy makers, as well as to ensure that providers use appropriate parts of the system. It can also be useful in national and international comparative studies.

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.

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.

IntroductionNeuropsychiatric symptoms (NPSs) in elderly patients with dementia are frequent in long-term care facilities (LTCFs) and are associated with adverse events. Telemedicine is an emerging way to provide consultation and care to dependent LTCF residents who may not have easy access to specialty services. Several studies have evaluated telemedicine for dementia care but to date, no study has evaluated its impact in the management of NPS in patients with dementia living in LTCF.Methods and analysisThe Dementia in long-term care facilities: Telemedicine for the management of neuropsychiatric symptoms (DETECT) study is a 24-month multicentre prospective cluster randomised controlled study with two arms: a control arm (usual care) and an intervention arm (telemedicine consultation) for NPSs management. DETECT enrolled 20 LTCFs. The primary outcome is based on the acceptability of the telemedicine among the LTCF staff which will be assessed in the intervention group by quantitative and qualitative indicators. The rate of unscheduled hospitalisations and/or consultations due to disruptive NPSs, psychotropic drug use and health costs will be described in both groups. Approximately, 200 patients are expected to be recruited.Ethics and disseminationThe study protocol was approved and sponsored by the French Ministry of Health. The study received ethical approval from the Toulouse University Hospital Institutional Review Board. We will communicate the final results to the public via conferences and results will also be submitted for publication in international peer-reviewed scientific journals.Trial registration numberNCT02472015.