Dementia care in European countries, from the perspective of people with dementia and their caregivers. (27th November 2014)

• Record Type: Journal Article
• Authors: Karlsson, Staffan; Bleijlevens, Michel; Roe, Brenda; Saks, Kai; Martin, Maria Soto; Stephan, Astrid; Suhonen, Riita; Zabalegui, Adelaida; Hallberg, Ingalill R.; the RightTimeCarePlace Consortium
• Is Part Of: Journal of advanced nursing. Volume 71:Number 6(2015:Jun.)
• Page Start: 1405
• Page End: 1416
• Publication Date: 2014-11-27
• Subjects: Nursing -- Periodicals; 610.7305
• DOI: 10.1111/jan.12581
• Languages: English
• ISSNs: 0309-2402

Abstract

<abstract abstract-type="main" id="jan12581-abs-0001"> <title>Abstract</title> <sec id="jan12581-sec-0001" sec-type="section"> <title>Aim</title> <p>To investigate persons with dementia and their informal caregivers' views of inter‐sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries.</p> </sec> <sec id="jan12581-sec-0002" sec-type="section"> <title>Background</title> <p>Living with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements.</p> </sec> <sec id="jan12581-sec-0003" sec-type="section"> <title>Design</title> <p>Qualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden.</p> </sec> <sec id="jan12581-sec-0004" sec-type="section"> <title>Methods</title> <p>Persons with dementia and their informal caregivers (<italic>N </italic>=<italic> </italic>137) participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested.</p> </sec> <sec id="jan12581-sec-0005" sec-type="section"> <title>Results</title> <p>The core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor‐made intervention and a single person or organization to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important.</p> </sec> <sec id="jan12581-sec-0006" sec-type="section"> <title>Conclusion</title> <p>As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organization to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver.</p> </sec> </abstract>