Dementia care in European countries, from the perspective of people with dementia and their caregivers

Abstract

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.

Experiences of advanced dementia care in seven European countries: implications for educating the workforce

“…Dementia organizations have traditionally offered a source of information and support services more for caregivers than for people with advanced dementia [9]. However, such organizations appear particularly well established in Europe compared with other parts of the world in our study [21].…”

“…Strong similarities have been found with the last Alzheimer Europe document published in 2014. The Dementia in Europe Yearbook 2014 [9] provided equal outcomes, though they reviewed the support and care available to people with dementia after diagnosis in 30 European countries and focused only on the information provided by members of Alzheimer Europe in those countries through a questionnaire. Similarities with our study demonstrate that there are no clear national guidelines, though several local initiatives, and no official pathways; there is no unified, comprehensive and separated care for people with dementia; there is fragmented provision of services; the transitions among services are not seamless and there is poor coordination between services; there is no information sharing between health and social systems; there is a lack of integrated models of care; and the system is complex.…”

“…According to Thomas and Harden (2008), it is a method for identifying, analysing and reporting patterns (themes) within data [14]. It organizes and describes the data set in rich detail and interprets various aspects of the research topic.…”

“…The dementia Palliare Project aimed to develop a range of social participatory and practice-based learning resources to equip qualified practitioners from all health and social care disciplines to champion improvements to advanced dementia care in their workplace [9]. A previous study conducted in eight European countries in 2011 by Karlsson et al and published in 2014 [10] investigated people with dementia and their informal caregivers’ views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care.…”

Dementia care in European countries – findings from the RightTimePlaceCare study

“…Focusing on services, Karlsson et al . () examine the views of people with dementia and their informal caregivers on inter‐sectoral information, communication and collaboration. Recommendations for practice are made, including the importance of developing trusting relationships, with continuity of care.…”