Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment.

INTRODUCTION: Ageing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and informal caregivers. By providing insight into people's preferences, discrete choice experiments (DCEs) can help develop consensus between stakeholders. This protocol paper outlines the development of a Dutch national study to cocreate a healthcare package design methodology built on DCEs that is person-centred and helps support informal caregivers and persons with dementia to AIP. A subpopulation analysis of persons with dementia with a migration background is planned due to their high risk for dementia and under-representation in research and care. METHODS AND ANALYSIS: The DCE is designed to understand how persons with dementia and informal caregivers choose between different healthcare packages. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs and preferences of persons with dementia and informal caregivers. The DCE will identify individual and joint preferences to AIP. The relative importance of each attribute will be calculated. The DCE data will be analysed with the use of a random parameters logit model. ETHICS AND DISSEMINATION: Ethics approval was waived by the Amsterdam University Medical Center (W23_112 #23.137). A study summary will be available on the websites of Alzheimer Nederland, Pharos and Amsterdam Public Health institute. Results are expected to be presented at (inter)national conferences, peer-reviewed papers will be submitted, and a dissemination meeting will be held to bring stakeholders together. The study results will help improve healthcare package design for all stakeholders.

Informal caregiver and nurse perceptions of access to culturally appropriate health care for ethnic minority persons with dementia: A qualitative study.

AIMS: This study explored what informal caregivers of ethnic minority (EM) persons with dementia in the Netherlands perceive as culturally accessible health care and nurses' perceptions of how cultural competence can be improved to facilitate access to health care for EM persons with dementia and their informal caregivers. DESIGN: Qualitative description research with semi-structured individual interviews and focus group discussions (FGDs). METHODS: Semi-structured interviews with 15 nurses and 6 informal caregivers provided input for two FGDs with nurses about the need to strengthen their cultural competence to improve access to health care for EM persons with dementia and their informal caregivers. Interview data were collected between September 2020 and April 2021 in the Netherlands. Focus group discussion data were collected between June and September 2021 in the Netherlands. RESULTS: Nurses and informal caregivers experienced difficulty building and maintaining a relationship. Contrary to informal caregivers' experiences, nurses felt a shared cultural background with the persons with dementia and informal caregiver is necessary. Although nurses acknowledged the importance of cultural knowledge, cultural skills, in particular, were mentioned as needing improvement. Examples are mapping involved family members and their roles, asking the right questions and letting go of personal judgements. Nurses frequently mentioned stereotypical thinking and seeing 'the other' as different, and collaboration with(in) family proved difficult for informal caregivers and nurses. CONCLUSION: Strengthening cultural skills will contribute to facilitating better access to cultural appropriate health care for EM persons with dementia and their informal caregivers. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: This study explores what is perceived as culturally accessible health care and what nurses need to improve their cultural competence. We show that strengthening nurses' cultural competence by addressing which skills should be improved can improve access to health care for EM persons with dementia and their informal caregivers.

Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature.

The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals' attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group.

Diversity in Advance Care Planning and End-Of-Life Conversations: Discourses of Healthcare Professionals and Researchers.

To meet the end-of-life needs of all patients, ongoing conversations about values and preferences regarding end-of-life care are essential. Aspects of social identity are associated with disparities in end-of-life care outcomes. Therefore, accounting for patient diversity in advance care planning and end-of-life conversations is important for equitable end-of-life practices. We conducted 16 semi-structured interviews to explore how Dutch healthcare professionals and researchers conceptualized diversity in advance care planning and end-of-life conversations and how they envision diversity-responsive end-of-life care and research. Using thematic discourse analysis, we identified five 'diversity discourses': the categorical discourse; the diversity as a determinant discourse; the diversity in norms and values discourse; the everyone is unique discourse, and the anti-essentialist discourse. These discourses may have distinct implications for diversity-responsive end-of-life conversations, care and research. Awareness and reflection on these discourses may contribute to more inclusive end-of-life practices.

Global Prevalence of Young-Onset Dementia: A Systematic Review and Meta-analysis.

Importance: Reliable prevalence estimates are lacking for young-onset dementia (YOD), in which symptoms of dementia start before the age of 65 years. Such estimates are needed for policy makers to organize appropriate health care. Objective: To determine the global prevalence of YOD. Data Sources: The PubMed, Embase, CINAHL, and PsycInfo databases were systematically searched for population-based studies on the prevalence of YOD published between January 1, 1990, and March 31, 2020. Study Selection: Studies containing data on the prevalence of dementia in individuals younger than 65 years were screened by 2 researchers for inclusion in a systematic review and meta-analysis. Data Extraction and Synthesis: Prevalence estimates on 5-year age bands, from 30 to 34 years to 60 to 64 years, were extracted. Random-effects meta-analyses were conducted to pool prevalence estimates. Results were age standardized for the World Standard Population. Heterogeneity was assessed by subgroup analyses for sex, dementia subtype, study design, and economic status based on the World Bank classification and by meta-regression. Main Outcomes and Measures: Prevalence estimates of YOD for 5-year age bands. Results: A total of 95 unique studies were included in this systematic review, of which 74 with 2 760 379 unique patients were also included in 5-year age band meta-analyses. Studies were mostly conducted in Europe and in older groups in Asia, North America, and Oceania. Age-standardized prevalence estimates increased from 1.1 per 100 000 population in the group aged 30 to 34 years to 77.4 per 100 000 population in the group aged 60 to 64 years. This gives an overall global age-standardized prevalence of 119.0 per 100 000 population in the age range of 30 to 64 years, corresponding to 3.9 million people aged 30 to 64 years living with YOD in the world. Subgroup analyses showed prevalence between men and women to be similar (crude estimates for men, 216.5 per 100 000 population; for women, 293.1 per 100 000 population), whereas prevalence was lower in high-income countries (crude estimate, 663.9 per 100 000 population) compared with upper-middle-income (crude estimate, 1873.6 per 100 000 population) and lower-middle-income (crude estimate, 764.2 per 100 000 population) countries. Meta-regression showed that age range (P < .001), sample size (P < .001), and study methodology (P = .02) significantly influenced heterogeneity between studies. Conclusions and Relevance: This systematic review and meta-analysis found an age-standardized prevalence of YOD of 119.0 per 100 000 population, although estimates of the prevalence in low-income countries and younger age ranges remain scarce. These results should help policy makers organize sufficient health care for this subgroup of individuals with dementia. Study Registration: PROSPERO CRD42019119288.

A Systematic Review of Neuropsychological Tests for the Assessment of Dementia in Non-Western, Low-Educated or Illiterate Populations.

OBJECTIVE: Neuropsychological tests are important instruments to determine a cognitive profile, giving insight into the etiology of dementia; however, these tests cannot readily be used in culturally diverse, low-educated populations, due to their dependence upon (Western) culture, education, and literacy. In this review we aim to give an overview of studies investigating domain-specific cognitive tests used to assess dementia in non-Western, low-educated populations. The second aim was to examine the quality of these studies and of the adaptations for culturally, linguistically, and educationally diverse populations. METHOD: A systematic review was performed using six databases, without restrictions on the year or language of publication. RESULTS: Forty-four studies were included, stemming mainly from Brazil, Hong Kong, Korea, and considering Hispanics/Latinos residing in the USA. Most studies focused on Alzheimer's disease (n = 17) or unspecified dementia (n = 16). Memory (n = 18) was studied most often, using 14 different tests. The traditional Western tests in the domains of attention (n = 8) and construction (n = 15), were unsuitable for low-educated patients. There was little variety in instruments measuring executive functioning (two tests, n = 13), and language (n = 12, of which 10 were naming tests). Many studies did not report a thorough adaptation procedure (n = 39) or blinding procedures (n = 29). CONCLUSIONS: Various formats of memory tests seem suitable for low-educated, non-Western populations. Promising tasks in other cognitive domains are the Stick Design Test, Five Digit Test, and verbal fluency test. Further research is needed regarding cross-cultural instruments measuring executive functioning and language in low-educated people.

Translation and Validation of the De Jong Gierveld Loneliness Scale Among Older Migrants Living in the Netherlands.

OBJECTIVES: We validate a translated version of the De Jong Gierveld Loneliness Scale (DJGLS) for use among older migrants from Turkish and Moroccan descent and validate the original Dutch version of the same scale for Surinamese migrants in the Netherlands. METHOD: The data were derived from a population-based cross-sectional study among community-dwelling individuals aged 55 and older. In addition to translating the DJGLS for these ethnic groups, several statistical analyses were performed to assess the scale's reliability and validity. RESULTS: The DJGLS proved to be internally consistent and to have adequate convergent validity among all ethnic groups. Latent structure analysis confirmed the two latent factors (emotional and social subscales) in all groups, but also showed that fit was not optimal in most groups. Known groups validity was observed using functional limitations and subjective health as grouping variables. CONCLUSIONS: The results provide sufficient support for use of the translated version of the 11-item DJGLS among Turkish and Moroccan older migrants and use of the Dutch version for Surinamese older migrants as a reliable and valid measure of loneliness. Fit of latent structural models varied between good and poor. Further research is needed to investigate ethnic differences in levels and determinants of loneliness.

The Cross-Cultural Dementia Screening (CCD): A new neuropsychological screening instrument for dementia in elderly immigrants.

OBJECTIVE: Currently, approximately 3.9% of the European population are non-EU citizens, and a large part of these people are from "non-Western" societies, such as Turkey and Morocco. For various reasons, the incidence of dementia in this group is expected to increase. However, cognitive testing is challenging due to language barriers and low education and/or illiteracy. The newly developed Cross-Cultural Dementia Screening (CCD) can be administered without an interpreter. It contains three subtests that assess memory, mental speed, and executive function. We hypothesized the CCD to be a culture-fair test that could discriminate between demented patients and cognitively healthy controls. METHOD: To test this hypothesis, 54 patients who had probable dementia were recruited via memory clinics. Controls (N = 1625) were recruited via their general practitioners. All patients and controls were aged 55 years and older and of six different self-defined ethnicities (Dutch, Turkish, Moroccan-Arabic, Moroccan-Berber, Surinamese-Creole, and Surinamese-Hindustani). Exclusion criteria included current or previous conditions that affect cognitive functioning. RESULTS: There were performance differences between the ethnic groups, but these disappeared after correcting for age and education differences between the groups, which supports our central hypothesis that the CCD is a culture-fair test. Receiver-operating characteristic (ROC) and logistic regression analyses showed that the CCD has high predictive validity for dementia (sensitivity: 85%; specificity: 89%). DISCUSSION: The CCD is a sensitive and culture-fair neuropsychological instrument for dementia screening in low-educated immigrant populations.

Insufficient cross-cultural adaptations and psychometric properties for many translated health assessment scales: a systematic review.

OBJECTIVES: If researchers want to assess reliably different aspects of general health in the migrant populations, they need translations of internationally used health assessment scales with appropriate cross-cultural adaptations and satisfactory psychometric properties. A systematic review was performed to assess the quality of the cross-cultural adaptations and the psychometric properties of health assessment scales measuring cognition, mood, activities of daily living, health-related quality of life, and loneliness. We focused on the scales that were adapted for use with Turkish, Arab, and Surinamese (Creole and Hindi) individuals aged 65 years and older. STUDY DESIGN AND SETTING: PubMed, PsycINFO, and EMBASE databases were systematically searched, and selected articles were cross-checked for other relevant publications. RESULTS: In total, 68 relevant studies of the Turkish, Arab, and Surinamese populations were identified. To arrive at an appropriate cross-culturally adapted scale, five steps are required. Six studies followed this complete process. Only a few studies assessed all the psychometric properties of the cross-culturally adapted scales. The studies in which these were best assessed primarily involved cognitive and functional scales. CONCLUSION: Cross-cultural adaptations are insufficient, and psychometric properties are unknown for many translated health assessment scales.