Staging Dementia – Development of a staging system to assess the needs for care of people with dementia and provide relevant care

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 what should 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

1. tested in different countries of the world to obtain information about its cross-cultural applicability and validity
2. shown to be reliably used by different categories of personnel engaged in the care of people with dementia (e.g. in general and specialised services)
3. introduced in routine services provided to people with dementia in in-patient and out-patient care.

AIMHP therefore designed a project whose main objectives are:

1. To define stages of dementia in operational terms
2. To develop a method that will allow the assessment of the stage of dementia in clinical work and research
3. To assess the value of the method in clinical work in practice conditions in several European countries, both at general health care and in specialist services
4. To assess the reliability of the staging method when used by different categories of health personnel
5. To propose a set of interventions for each stage of severity of dementia
6. To promote the use of the staging method in education, clinical work and research on dementia

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 the currently 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). The involvement 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 the third 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. It is also expected that the investigators will present the results of the work at scientific meetings and in scientific publications. AIMHP will also continue to monitor the experience with the staging criteria obtained by their application in practice and research.

The Staging of Dementia project resulted in a number of publications.

Burns A, (on behalf of the European Dementia Consensus Network) (ed), 2005. Standards in Dementia Care, Informa Healthcare

Waldemar G, Phung KTT, Burns A, Georges J, Ronholt Hansen F, Iliffe S, Marking C, Olde Rikkert, M, Selmes J, Stoppe G and Sartorius N, on behalf of the European Dementia Consensus Network (EDCON) (2007). Access to diagnostic evaluation and treatment for dementia in Europe, International Journal of Geriatric Psychiatry, 2007, 22: 47-54Byrne EJ, Benoit M, Lopez Arrieta JM, Geraldi C, Koopmans R, Rolland Y, Sartorius N, Stoppe N and Robert P (2008). For whom and for what the definition of severe dementia is useful: An EDCON consensus, The Journal of Nutrition, Health and Aging, 2008, 12(10): 714-9

Olde Rikkert MG, van der Vorm A, Burns A, Dekkers W, Robert P, Sartorius N, Selmes J, Stoppe G, Vernooij-Dassen M and Waldemar G (2008). Consensus statement on genetic research in dementia, American Journal of Alzheimer’s Disease and Other Dementias, 2008, 23(3): 262-266

Stoppe G (on behalf of the European Dementia Consensus Network) (ed), (2008). Competence Assessment in Dementia, Vienna: Springer-Verlag

van der Vorm A, Olde Rikkert M, Vernooij-Dassen M and Dekkers W, on behalf of the EDCON panel (2008). Genetic research into Alzheimer’s disease: A European focus group study on ethical issues, International Journal of Geriatric Psychiatry, 2008, 23: 11-15

Burns A, Robert P, Semrau M, Sartorius N, Lobo A, Olde Rikkert M, Stoppe G. (2019) Dementia care – International Perspectives. Current Opinion in Psychiatry, 32(4): 361-365.

Semrau M, Burns A, Djukic-Dejanovic S, Eraslan D, Han C, Lecic-Tosevski D, Lobo A, Mihai A, Morris J, Palumbo C, Robert P, Stiens G, Stoppe G, Volpe U, Olde Rikkert M, Sartorius N. (2015). Development of an International Schedule for the Assessment and Staging of Care for Dementia. Journal of Alzheimer’s Disease 44:139-151.

Olde Rikkert MGM, Tona KD, Janssen L, Burns A, Lobo A, Robert P, Sartorius N, Stoppe G and Waldemar G (2011). Validity, reliability and feasibility of clinical staging scales in dementia: A systematic review, American Journal of Alzheimer’s Disease and Other Dementias, 2011, 26(5): 357-365.

Lobo A, Olde Rikkert M, Robert Burns P, Sartorius N, Semrau M, Stoppe G. (2021) COVID-19 and dementia: experience from six European countries.  J. Geriatr Psychiatry. 2021:1-7.  DOI: 10.1002/GPS.5497

Burns A, Robrt P, Sartorius N, Lobo A, Olde Rikkert M, Semrau M, Stoppe G. (2019) Dementia Care: International Perspectives. Oxford University Press, UK.373 p. (ISBN 978-0-19-879604-6)

Semrau M, Burns A, Lobo A, Olde Rikkert M, Robert P, Schepens M, Stoppe G, Sartorius N. (2019)  Assessment and Staging of Care for People with Dementia - The IDEAL schedule and its user manual. Oxford University Press, UK. 84p. (ISBN 978-0-19-882897-5).