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

Purpose: There is a knowledge gap with regard to the structure of the care and service system available to persons with dementia. This is very much a concern for nurses who are the main providers in the care of dementia. The study, a part of the "RightTimePlaceCare" project, describes the development and content of a mapping system aimed at exploring the content of care and service for persons with dementia and their informal caregiver throughout the disease trajectory. The usefulness of the mapping system is illustrated in describing the availability of care and service at the diagnostic stage, and at the institutional and palliative stages.

Design: A descriptive cross-country design concerning eight European countries differing in demographic composition and terms of long-term care provided is employed.

Methods: A modified consensus strategy was used to develop the mapping system and define the terminology. Thereafter, each country's mapping system was completed by its research group collecting country-specific information and using expert groups either as consultants or for completing the system.

Findings: The consensus procedure worked satisfactorily with regard to content and definitions, whereas assessing the availability and utilization of care and service was problematic. Some 50 types care and service activities were identified and defined and were categorized as follows: (a) screening, diagnostic procedures, and treatment of dementia; (b) outpatient care facilities; (c) care at home; (d) institutional care; (e) palliative care; (f) informal caregiving and supportive actions; and (g) civic activities. Care at home included the broadest range of activities; palliative care, informal caregiving, and supportive actions were the smallest range.

Conclusions: The dementia care systems were found to be comprehensive and to emphasize home care. Activities aimed at transferring knowledge to informal caregivers, though highly important for home care, seemed less extensive. The mapping system appears useful from a nurse manager's standpoint for exploring the dementia care pathway. Comparisons between countries appear useful for developing the care system and for sharing information of how to perfect it. Further testing and development are needed regarding information on the availability and utilization of care and service activities.

Clinical relevance: 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.