Intercultural dementia diagnostics and care in the memory clinic

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.