EDSS Focus group interviews about dementia care in eight European countries, from the perspective of people with dementia and their caregivers

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.