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Intercultural dementia diagnostics and care in the memory clinic

Projectomschrijving

Aanleiding

De bezoekers van geheugenpoliklinieken in Nederland worden steeds diverser wat betreft culturele achtergrond, opleiding en de taal die zij spreken. Veel van de testen die gebruikt werden om dementie vast te stellen zijn niet geschikt voor oudere mensen met een (cultureel) diverse achtergrond (zoals oudere migranten). Dit komt bijvoorbeeld doordat er cultuurspecifieke plaatjes in zitten (stelten, krakeling).

Resultaten

In ons onderzoek ontwikkelden en onderzochten we nieuwe testen om het geheugen en de taal te meten. Met deze nieuwe testen kunnen we beter onderzoeken wie dementie heeft. Zo worden hopelijk minder foute diagnoses gesteld bij mensen met een diverse achtergrond in Nederland. Ook hebben we een nieuw netwerk opgericht voor Europese samenwerking; het Europees Consortium voor Cross-Culturele Neuropsychologie op (ECCroN). Daarnaast bleek uit ons onderzoek dat mantelzorgers met een diverse achtergrond vaak overbelast zijn. In ons onderzoek richtten wij ons daarna op onderzoek hoe zij de zorg kunnen volhouden.

Meer informatie

Producten

Titel: Dementia detection with a combination of informant-based and performance-based measures in low-educated and illiterate elderly migrants.
Auteur: Goudsmit, M., van Campen, J.P.C.M., Franzen, S. van den Berg, E., Schilt, T. & Schmand, B.
Magazine: Neuropsychologie
Titel: Neuropsychologische diagnostiek bij niet-Westerse migranten.
Auteur: Franzen, S., van den Berg. E. & Papma, J.M.
Magazine: Tijdschrift voor neuropsychologie
Titel: Consideration of sex and gender in Alzheimer’s disease and related disorders from a global perspective.
Auteur: Mielke, M.M. Aggarwal, N.T. , Vila-Castelar, C., Agarwal, P., Arenaza-Urquijo, E.M., Brett, B., Brugulat-Serrat, A., DuBose, L.E., Eikelboom, W.S., Flatt, J., Foldi, N.S., Franzen, S., Gilsanz, P., Li, W., McManus, A.J., Melo van Lent, D. Milani, S.A., Shaaban, C.E., Stites, S.D., Sundermann, E., Suryadevara, V.., Trani, J.-F., Turner, A.D., Vonk, J.M.J., Quiroz, Y.T., & Babulal, G.M. for the Diversity and Disparity Professional Interest Area Sex and Gender Special Interest Group
Magazine: Alzheimer's & Dementia
Titel: Caregiver burden in a culturally diverse memory clinic population: the Caregiver Strain Index-Expanded.
Auteur: Franzen, S., Eikelboom, W.S., van den Berg, E., Jiskoot, L.C., van Hemmen, J., & Papma, J.M.
Magazine: Dementia and Geriatric Cognitive Disorders
Titel: Cross-cultural neuropsychological assessment in Europe: position statement of the European Consortium on Cross-Cultural Neuropsychology (ECCroN).
Auteur: Franzen, S. on behalf of the European Consortium on Cross-Cultural Neuropsychology
Magazine: Neuropsychologie
Titel: A systematic review of neuropsychological tests for the assessment of dementia in non-Western, low-educated or illiterate populations.
Auteur: Franzen, S., van den Berg, E., Goudsmit, M., Jurgens, C.K., van de Wiel, L., Kalkisim, Y., Uysal-Bozkir, Ö., Ayhan, Y., Nielsen, T.R., & Papma, J.M.
Magazine: Journal of the International Neuropsychological Society
Titel: Cross-cultural neuropsychological assessment in the European Union: A Delphi expert study.
Auteur: Franzen, S., Papma, J.M., van den Berg, E., & Nielsen, T.R.
Magazine: Neuropsychologie
Titel: Cross-culturele neuropsychologisch diagnostiek bij volwassenen en ouderen op de geheugenpoli.
Auteur: Franzen, S., van den Berg, E., & Papma, J.M.
Magazine: Tijdschrift voor neuropsychologie
Titel: Diversity in Alzheimer’s Disease drug trials: The importance of eligibility criteria.
Auteur: Franzen, S., Smith, J.E., van den Berg, E., Rivera Mindt, M., van Bruchem-Visser, R.L., Abner, E., Schneider, L.S., Prins, N.D., Babulal, G.M., & Papma, J.M.
Magazine: Alzheimer's & Dementia
Titel: The Naming Assessment in Multicultural Europe (NAME): Development and validation in a multicultural memory clinic.
Auteur: Franzen, S., van den Berg, E., Ayhan, Y., Satoer, D.D., Türkoglu, Ö., Genç Akpulat, E., Visch-Brink, E.G., Scheffers, E.A., Kranenburg, J., Jiskoot, L.C., van Hemmen, J., & Papma, J.M.
Magazine: Journal of the International Neuropsychological Society
Titel: One size does not fit all: comparative diagnostic accuracy of the Rowland Universal Dementia Assessment Scale and the Mini Mental State Examination in a very low educated multicultural memory clinic population.
Auteur: Goudsmit, M., van Campen, J., Schilt, T., Hinnen, C., Franzen, S. & Schmand, B.
Magazine: Dementia and Geriatric Cognitive Disorders
Titel: Neuropsychological assessment in the multicultural memory clinic: development and feasibility of the TULIPA battery.
Auteur: Franzen, S., van den Berg, E., Bossenbroek, W., Kranenburg, J., Scheffers, E.A., van Hout, M., van de Wiel, L., Goudsmit, M., van Bruchem-Visser, R.L., van Hemmen, J., Jiskoot, L., & Papma, J.
Magazine: Neuropsychologie
Titel: Assessment of visual association memory in low-educated, non-Western immigrants with the modified Visual Association Test.
Auteur: Franzen, S., van den Berg, E., Kalkisim, Y., van de Wiel, L., Harkes, M., van Bruchem-Visser, R.L., de Jong, F.J., Jiskoot, L.C., & Papma, J.M.
Magazine: Dementia and Geriatric Cognitive Disorders
Titel: Diversity in Alzheimer’s Disease Drug Trials: Reflections on Reporting and Social Construction of Race.
Auteur: Babulal, G.M., Franzen, S., Abner, E., Smith, J.E., van den Berg, E., Rivera Mindt, M., van Bruchem-Visser, R.L., Schneider, L.S., Prins, N.D., & Papma, J.M.
Magazine: Alzheimer's & Dementia
Titel: Neuropsychological Assessment of Moroccan Patients in the Netherlands.
Auteur: Uysal-Bozkir, Ö., Franzen, S., & Goudsmit, M.
Titel: Cross-cultural Neuropsychological Assessment in the European Context: Embracing Maximum Diversity at Minimal Geographic Distances.
Auteur: Nielsen, T.R., Franzen, S., Goudsmit, M., & Uysal-Bozkir, Ö.
Titel: Neuropsychological assessment in the multicultural memory clinic
Auteur: Franzen, S.

Verslagen


Samenvatting van de aanvraag

The number of dementia patients among culturally and linguistically diverse (CALD) populations in the Netherlands will increase drastically over the next decades. Dutch memory clinics are not prepared for this rise in non-Western patients, as language and cultural differences, as well as a lack of cross-cultural diagnostic assessment and treatment tools, heavily hamper dementia diagnosis and care in CALD patients. A culturally competent approach in the Dutch expert centers: Alzheimercenter Rotterdam, MC Haaglanden, and MC Slotervaart, has overcome some of these problems, but it is our experience that both Dutch dementia diagnostics and treatment options are in urgent need of cross-cultural adaptations: 1) In-depth cognitive tests rely heavily on the Dutch language, Western culture, and scholastic ability, making them unsuitable for use in CALD patients. 2) In CALD patients dropout rates in dementia aftercare are high and therapy results unsatisfactory, caused by different explanatory models of dementia, different (somatic) presentations of distress, and shame and stigma associated with psychological treatment. The first goal of this study is to develop a cross-cultural in-depth cognitive test protocol (WP1), in order to improve syndromal and nosological dementia diagnosis in CALD patients in the memory clinic. In WP1 we will make use of the extensive experience of our project members (MC Slotervaart), and have accordingly designed a prospective diagnostic accuracy study consisting of multiple phases: 1) systematic review of the literature on cross-cultural neuropsychometrics, 2) organization of focus group sessions with experts on cross-cultural test design, 3) focus group sessions with CALD patients/caregivers, 4) test development, 5) pilot testing, 6) clinical validation, and 7) standardization in the healthy CALD population. Deliverables of WP 1 are scientific papers, validated and standardized cross-cultural in-depth cognitive tests, as well as an intercultural addendum to the ‘Zorgstandaard dementie’/NHG standard (Dutch guidelines on dementia diagnostics and care), on culturally competent health care. WP1 is a collaboration of the Alzheimercenter Rotterdam, MC Slotervaart, MC Haaglanden, Pharos and SPIOR. Our second goal is to improve the quality of life (QOL) and caregiver strain in CALD dementia patients and caregivers, by means of personalized therapy: Solution Focused Brief Therapy (SFBT) (WP2). With its solution-focused approach, SFBT has the potential to circumvent somatic presentations of distress, taboo on dementia, and non-matching explanatory models of dementia. Several studies have shown effectiveness of SFBT in CALD-patients, various medical conditions, and in the elderly. We will compare SFBT (n=30) in an RCT with a sham condition (n=30) and care as usual (n=30) in Turkish and Moroccan patients and their caregivers. Furthermore, a native Dutch control group will be included. Outcome measures are assessed at the start (T0), and end of treatment (approx. 2 months, T1), and six months post-treatment (T2). We will publish scientific papers, develop an intercultural addendum on psychological treatment in CALD patients to the ‘Zorgstandaard Dementie’, and perform a cost-effectiveness analysis. Evidence of the effectiveness of SFBT can be used to reach out to health insurance companies. WP2 is a collaboration of the Alzheimercenter Rotterdam, MC Haaglanden, SPIOR, and Erasmus University Rotterdam. A solid implementation plan, involving knowledge dissemination through our partners Alzheimer Nederland, SPIOR (patient organizations) and the Hogeschool Rotterdam (education), will ensure an impact beyond scientific merits. Primary stakeholders are patients and caregivers, GPs and memory clinics, (neuro)psychologists, researchers and policy makers. Facilitators and barriers to implementation will be assessed and stakeholders will be reached through information meetings, dementie.nl, newsletters, conferences and research papers. With great expertise in CALD populations, a strong scientific and clinical infrastructure and a large (culturally competent) network, this research project is well-situated in our centers. The active participation of patients and caregivers in our project, and focus on diversity, ensures the validity and relevance of this study. The feasibility of this ambitious project is excellent through our extensive network and our combined experience on test design and diagnostic work-up in specialized CALD memory clinics.

Kenmerken

Projectnummer:
733050834
Looptijd: 100 %
Looptijd: 100 %
2017
2022
Onderdeel van programma:
Gerelateerde subsidieronde:
Projectleider en penvoerder:
Dr. J.M. Papma
Verantwoordelijke organisatie:
Erasmus MC