An elementary shortcoming of the currently existing strategies related to the research, service organization and education concerning dementia is the fuzziness of the borders of the different stages of development of dementia. Patients with severe and terminal forms of dementia have very different needs from those who are less severely ill. The services that should provide care to people with dementia have not clearly defined whatshould be the priority interventions at the different stages of the development of the disease. The competence of people with dementia related to legal and other requirements is a matter of controversy, not least because it is very different in the course of the illness. The communication between specialist and general health care is therefore deficient and referral patterns are often not optimal.
Over the past few decades several instruments for the assessment of severity of dementia have been developed. While each of them has some advantages there is none that has been
AIMHP therefore designed a project whose main objectives are:
The project was being carried out in 4 stages. In the first stage of the project the Steering Committee produced draft criteria defining the stages of dementia using the evidence that had been obtained by using thecurrently existing staging instruments as well as clinical experience. This was done during steering committee meetings and through correspondence.
The steering committee for the project was composed of experts who with the initiative of the AMH have in the past developed the European Dementia Consensus Network (EDCON). It included Alistair Burns, MD, PhD,Antonio Lobo, MD, PhD, Marcel G. M.Olde Rikkert, MD, PhD, Philippe Robert, MD, PhD, Norman Sartorius, MD, PhD (chairperson), Maya Semrau, and Gabriela Stoppe. MD, PhD.
In the second phase of the project a series of focus group meetings involving different types of personnel discussed criteria which were then amended in the light of the comments received.
The first and the second phase of the project were carried out in Denmark, France, Germany, Spain, Switzerland and the UK. Subsequently other centres (usually leading institutions) have joined the project, including Bari (Italy), Istanbul (Turkey), Zurich (Switzerland), Seoul (Korea) and Beijing (China). Theinvolvement of centres in different countries was necessary because of differences in the organization of care for people with dementia, cultural differences (including traditions of care and organization of families), the size of the populations that could benefit from the introduction of an assessment tool tested and found valid in the country and the rapid growth of interest in improving the care for the elderly in those countries. In addition, it was felt that having instruments tested in different countries and developed in equivalent versions in Chinese, English, French, German, Korean, Spanish and Turkish would significantly facilitate subsequent extended use of the assessment instruments in other countries that have one of these languages as their first or second language of communication.
Once the criteria have been tested and proven to correspond to psychometric requirements EDCON begun thethird phase of this project which included the development of a manual and glossary for use with the assessment schedule (IDEAL Schedule) as well as of a menu of interventions that should be considered at different stages of the illness. In the fourth phase of the project the focus is on the promotion of the use of the staging system in the countries in which they were developed and in the other countries listed above. The investigators presented the results of the work at scientific meetings and in scientific publications.
The Staging of Dementia project resulted in a number of publications.