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Wiley, Journal of Nursing Scholarship, 4(45), p. 412-424, 2013

DOI: 10.1111/jnu.12046

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Dementia care in eight European countries: Developing a mapping system to explore systems

This paper was not found in any repository, but could be made available legally by the author.
This paper was not found in any repository, but could be made available legally by the author.

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Abstract

Purpose: There is a knowledge gap with regard to the structure of the careand service system available to persons with dementia. This is very much aconcern for nurses who are the main providers in the care of dementia. Thestudy, a part of the “RightTimePlaceCare” project, describes the developmentand content of a mapping system aimed at exploring the content of care andservice for persons with dementia and their informal caregiver throughout thedisease trajectory. The usefulness of the mapping system is illustrated in describing the availability of care and service at the diagnostic stage, and at theinstitutional and palliative stages.Design: A descriptive cross-country design concerning eight European countriesdiffering in demographic composition and terms of long-term care providedis employed.Methods: A modified consensus strategy was used to develop the mappingsystem and define the terminology. Thereafter, each country´s mapping systemwas completed by its research group collecting country-specific informationand using expert groups either as consultants or for completing the system.Findings: The consensus procedure worked satisfactorily with regard to contentand definitions, whereas assessing the availability and utilization of careand service was problematic. Some 50 types care and service activities wereidentified and defined and were categorized as follows: (a) screening, diagnosticprocedures, and treatment of dementia; (b) outpatient care facilities; (c) careat home; (d) institutional care; (e) palliative care; (f) informal caregiving andsupportive actions; and (g) civic activities. Care at home included the broadestrange of activities; palliative care, informal caregiving, and supportive actionswere the smallest range.Conclusions: The dementia care systems were found to be comprehensiveand to emphasize home care. Activities aimed at transferring knowledge to informalcaregivers, though highly important for home care, seemed less extensive.The mapping system appears useful from a nurse manager’s standpointfor exploring the dementia care pathway. Comparisons between countriesappear useful for developing the care system and for sharing information of how to perfect it. Further testing and development are needed regarding informationon the availability and utilization of care and service activities.Clinical Relevance: The mapping system can be useful in clarifying the dementiacare system for those concerned, in helping nurse researchers and managersreview and initiate evaluation and communicate with policy makers, aswell as to ensure that providers use appropriate parts of the system. It can alsobe useful in national and international comparative studies.