Development of an international schedule for the assessment and staging of care for dementia

Maya Semrau; Alistair Burns; Slavica Djukic-Dejanovic; Defne Eraslan; Changsu Han; Dusica Lecic-Tosevski; Antonio Lobo; Adriana Mihai; Julie Morris; Claudia Palumbo; Philippe Robert; Gerthild  Stiens; Gabriela Stoppe; Umberto Volpe; Marcel Olde Rikkert; Norman Sartorius

doi:10.3233/JAD-141599

Development of an international schedule for the assessment and staging of care for dementia

Maya Semrau, Alistair Burns, Slavica Djukic-Dejanovic, Defne Eraslan, Changsu Han, Dusica Lecic-Tosevski, Antonio Lobo, Adriana Mihai, Julie Morris, Claudia Palumbo, Philippe Robert, Gerthild Stiens, Gabriela Stoppe, Umberto Volpe, Marcel Olde Rikkert, Norman Sartorius

Health Service & Population Research

Research output: Contribution to journal › Article › peer-review

12 Citations (Scopus)

Abstract

Background: A reliable and valid global staging scale has been lacking within dementia care. Objective: To develop an easy-to-use multi-dimensional clinical staging schedule for dementia. Methods: The schedule was developed through: i) Two series of focus groups (40 and 48 participants, respectively) in Denmark, France, Germany, Netherlands, Spain, Switzerland, and UK with a multi-disciplinary group of professionals working within dementia care, to assess the need for a dementia-staging tool and to obtain suggestions on its design and characteristics; ii) A pilot-study over three rounds to test inter-rater reliability of the newly developed schedule using written case histories, with five members of the project's steering committee and 27 of their colleagues from Netherlands, France, and Spain as participants; and iii) A field-study to test the schedule's inter-rater reliability in clinical practice in France, Germany, Netherlands, Spain, Italy, Turkey, South Korea, Romania, and Serbia, which included 209 dementia patients and 217 of their caregivers as participants. Results: Focus group participants indicated a clear need for a culture-fair international dementia staging scale and reached consensus on face validity and content validity. Accordingly, the schedule has been composed of seven dimensions including behavioral, cognitive, physical, functional, social, and care aspects. Overall, the schedule showed adequate face validity, content validity, and inter-rater reliability; in the nine field-sites, intraclass correlation coefficients (ICCs; absolute agreement) for individual dimensions ranged between 0.38 and 1.0, with 84.4% of ICCs over 0.7. ICCs for total sum scores ranged between 0.89 and 0.99 in the nine field-sites. Conclusion: The IDEAL schedule looks promising as tool for the clinical and social management of people with dementia globally, though further reliability and validity testing is needed.

Original language	English
Pages (from-to)	139-151
Number of pages	13
Journal	Journal of Alzheimer's disease : JAD
Volume	44
Issue number	1
Early online date	2 Sept 2014
DOIs	https://doi.org/10.3233/JAD-141599
Publication status	Published - 2014

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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. (2014). Development of an international schedule for the assessment and staging of care for dementia. Journal of Alzheimer's disease : JAD, 44(1), 139-151. https://doi.org/10.3233/JAD-141599

@article{2b53429e79df4155b61fdd8b36ed98c0,

title = "Development of an international schedule for the assessment and staging of care for dementia",

abstract = "Background: A reliable and valid global staging scale has been lacking within dementia care. Objective: To develop an easy-to-use multi-dimensional clinical staging schedule for dementia. Methods: The schedule was developed through: i) Two series of focus groups (40 and 48 participants, respectively) in Denmark, France, Germany, Netherlands, Spain, Switzerland, and UK with a multi-disciplinary group of professionals working within dementia care, to assess the need for a dementia-staging tool and to obtain suggestions on its design and characteristics; ii) A pilot-study over three rounds to test inter-rater reliability of the newly developed schedule using written case histories, with five members of the project's steering committee and 27 of their colleagues from Netherlands, France, and Spain as participants; and iii) A field-study to test the schedule's inter-rater reliability in clinical practice in France, Germany, Netherlands, Spain, Italy, Turkey, South Korea, Romania, and Serbia, which included 209 dementia patients and 217 of their caregivers as participants. Results: Focus group participants indicated a clear need for a culture-fair international dementia staging scale and reached consensus on face validity and content validity. Accordingly, the schedule has been composed of seven dimensions including behavioral, cognitive, physical, functional, social, and care aspects. Overall, the schedule showed adequate face validity, content validity, and inter-rater reliability; in the nine field-sites, intraclass correlation coefficients (ICCs; absolute agreement) for individual dimensions ranged between 0.38 and 1.0, with 84.4% of ICCs over 0.7. ICCs for total sum scores ranged between 0.89 and 0.99 in the nine field-sites. Conclusion: The IDEAL schedule looks promising as tool for the clinical and social management of people with dementia globally, though further reliability and validity testing is needed.",

author = "Maya Semrau and Alistair Burns and Slavica Djukic-Dejanovic and Defne Eraslan and Changsu Han and Dusica Lecic-Tosevski and Antonio Lobo and Adriana Mihai and Julie Morris and Claudia Palumbo and Philippe Robert and Gerthild Stiens and Gabriela Stoppe and Umberto Volpe and {Olde Rikkert}, Marcel and Norman Sartorius",

year = "2014",

doi = "10.3233/JAD-141599",

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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 2014, 'Development of an international schedule for the assessment and staging of care for dementia', Journal of Alzheimer's disease : JAD, vol. 44, no. 1, pp. 139-151. https://doi.org/10.3233/JAD-141599

TY - JOUR

T1 - Development of an international schedule for the assessment and staging of care for dementia

AU - Semrau, Maya

AU - Burns, Alistair

AU - Djukic-Dejanovic, Slavica

AU - Eraslan, Defne

AU - Han, Changsu

AU - Lecic-Tosevski, Dusica

AU - Lobo, Antonio

AU - Mihai, Adriana

AU - Morris, Julie

AU - Palumbo, Claudia

AU - Robert, Philippe

AU - Stiens, Gerthild

AU - Stoppe, Gabriela

AU - Volpe, Umberto

AU - Olde Rikkert, Marcel

AU - Sartorius, Norman

PY - 2014

Y1 - 2014

N2 - Background: A reliable and valid global staging scale has been lacking within dementia care. Objective: To develop an easy-to-use multi-dimensional clinical staging schedule for dementia. Methods: The schedule was developed through: i) Two series of focus groups (40 and 48 participants, respectively) in Denmark, France, Germany, Netherlands, Spain, Switzerland, and UK with a multi-disciplinary group of professionals working within dementia care, to assess the need for a dementia-staging tool and to obtain suggestions on its design and characteristics; ii) A pilot-study over three rounds to test inter-rater reliability of the newly developed schedule using written case histories, with five members of the project's steering committee and 27 of their colleagues from Netherlands, France, and Spain as participants; and iii) A field-study to test the schedule's inter-rater reliability in clinical practice in France, Germany, Netherlands, Spain, Italy, Turkey, South Korea, Romania, and Serbia, which included 209 dementia patients and 217 of their caregivers as participants. Results: Focus group participants indicated a clear need for a culture-fair international dementia staging scale and reached consensus on face validity and content validity. Accordingly, the schedule has been composed of seven dimensions including behavioral, cognitive, physical, functional, social, and care aspects. Overall, the schedule showed adequate face validity, content validity, and inter-rater reliability; in the nine field-sites, intraclass correlation coefficients (ICCs; absolute agreement) for individual dimensions ranged between 0.38 and 1.0, with 84.4% of ICCs over 0.7. ICCs for total sum scores ranged between 0.89 and 0.99 in the nine field-sites. Conclusion: The IDEAL schedule looks promising as tool for the clinical and social management of people with dementia globally, though further reliability and validity testing is needed.

AB - Background: A reliable and valid global staging scale has been lacking within dementia care. Objective: To develop an easy-to-use multi-dimensional clinical staging schedule for dementia. Methods: The schedule was developed through: i) Two series of focus groups (40 and 48 participants, respectively) in Denmark, France, Germany, Netherlands, Spain, Switzerland, and UK with a multi-disciplinary group of professionals working within dementia care, to assess the need for a dementia-staging tool and to obtain suggestions on its design and characteristics; ii) A pilot-study over three rounds to test inter-rater reliability of the newly developed schedule using written case histories, with five members of the project's steering committee and 27 of their colleagues from Netherlands, France, and Spain as participants; and iii) A field-study to test the schedule's inter-rater reliability in clinical practice in France, Germany, Netherlands, Spain, Italy, Turkey, South Korea, Romania, and Serbia, which included 209 dementia patients and 217 of their caregivers as participants. Results: Focus group participants indicated a clear need for a culture-fair international dementia staging scale and reached consensus on face validity and content validity. Accordingly, the schedule has been composed of seven dimensions including behavioral, cognitive, physical, functional, social, and care aspects. Overall, the schedule showed adequate face validity, content validity, and inter-rater reliability; in the nine field-sites, intraclass correlation coefficients (ICCs; absolute agreement) for individual dimensions ranged between 0.38 and 1.0, with 84.4% of ICCs over 0.7. ICCs for total sum scores ranged between 0.89 and 0.99 in the nine field-sites. Conclusion: The IDEAL schedule looks promising as tool for the clinical and social management of people with dementia globally, though further reliability and validity testing is needed.

U2 - 10.3233/JAD-141599

DO - 10.3233/JAD-141599

M3 - Article

SN - 1875-8908

VL - 44

SP - 139

EP - 151

JO - Journal of Alzheimer's disease : JAD

JF - Journal of Alzheimer's disease : JAD

IS - 1

ER -

Development of an international schedule for the assessment and staging of care for dementia

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