Costs of care trajectories of people with dementia compared with matched controls. Longitudinal analysis of linked health and administrative data.

OBJECTIVES: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia. METHODS: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis. RESULTS: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia. CONCLUSIONS: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs.

Prevalence of Health Problems and Health-Care Use in Partners of People with Dementia: Longitudinal Analysis with Routinely Recorded Health and Administrative Data.

INTRODUCTION: This study aims to provide insight into the prevalence of health problems and the frequency of general practitioner (GP) contacts in cohabiting partners of persons with dementia, during the year prior to the dementia diagnosis and up to 3 years after the diagnosis. METHODS: Partners of persons with dementia and a matched control group of partners of persons without dementia were identified in the routinely recorded electronic health records of 451 Dutch general practices in 2008-2015. These data were used to examine the prevalence of the partners' health problems. Differences between these partners and comparison partners in the prevalence of 16 groups of health problems (diagnostic chapters) and in the frequency of GP contacts were examined using generalized estimating equation models. RESULTS: 1,711 partners of persons with dementia and 6,201 comparison partners were included in the analyses. Social problems, more specifically problems related to the illness and/or the loss of the partner, were significantly more prevalent in partners than in comparison partners across the years (p < 0.01), as were musculoskeletal problems (p < 0.01). Respiratory and psychological problems increased over time in partners and remained stable in comparison partners. Across the years, partners contacted their GP more often than comparison partners (p < 0.01). DISCUSSION/CONCLUSION: Having a cohabiting partner with dementia has consequences for caregiver's physical and psychosocial health. The specific health problems found in this study and the increase in GP contacts might be relevant indicators of overburdening in partners of persons with dementia.

Interventions for improving self-direction in people with dementia: a systematic review.

BACKGROUND: Dementia is a progressive disease that affects people's everyday functioning, including the ability to express values, needs and wishes, which can be considered key elements of self-direction. For the purpose of this review, self-direction refers to the organization and/or coordination of your own life, including professional and other care, with the objective of having what you perceive to be a good life. The aim of this systematic review was to assess and describe interventions that aim to improve self-direction of people with dementia. METHODS: A systematic search was conducted in PubMed, Embase, CINAHL, PsycInfo and the Cochrane Library. Empirical studies up to April 2020 were included that used qualitative and/or quantitative methods and reported on interventions for people with dementia aimed at improving self-direction. Stepwise study selection and the assessment of methodological quality were conducted independently by two authors. Data on study and intervention characteristics, outcomes related to self-direction and well-being of people with dementia and factors influencing the feasibility were extracted systematically and described narratively. RESULTS: Ten studies were identified describing a total of nine interventions. Interventions varied in terms of goals, content, target population and duration. Overall, interventions consisted of multiple components focusing on identifying "Who am I?" (beliefs, strengths, values, goals), identifying "What is important to me?" (meaningful activities and goal setting) and/or communicating about preferences with professionals and/or caregivers. The review provides indications that people with dementia may benefit from the interventions included. Overall, positive effects were found in studies on outcomes related to self-direction and wellbeing. However, outcomes measured using quantitative methods showed inconsistent effects between the studies. CONCLUSIONS: Although the methodological quality of all the studies included was 'good' or at least 'fair', the evidence base of interventions aiming to improve self-direction is still limited due to the low number of studies, the low number of participants and the frequent use of and their authors' own non-standardized measures. Nevertheless, the review points towards positive effects on self-direction and well-being. Identifying individual beliefs, strengths, values, goals and meaningful activities can be essential components of these interventions, as well as communication about the desired care and support.

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background.

BACKGROUND: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. METHODS: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. RESULTS: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach's alpha: 0.94). The CFA indicated that the factor 'Self-perceived Pressure from Informal Care' explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). CONCLUSIONS: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

Identifying subgroups of persons with multimorbidity based on their needs for care and support.

BACKGROUND: There is broad consensus that countries need to develop and implement person-centred integrated care to better meet the needs of their growing populations with multimorbidity. To develop appropriate care, it is essential to know the needs for care and support among these populations. For this purpose, we examined whether subgroups of people with multimorbidity could be distinguished based on their needs, and profiled these subgroups according to medical complexity and the availability of personal resources. METHODS: Persons diagnosed with two or more somatic chronic diseases (N = 613) were selected from 38 general practices throughout the Netherlands. We conducted a cluster analysis of their scores on the RAND-36 questionnaire of health-related quality of life (QoL), to gain insight in their needs for care and support. Differences in demographics, medical characteristics and personal resources between the identified clusters were tested using analysis of variance and chi-square tests. RESULTS: The cluster analysis revealed three subgroups: 1. a group with a relatively good QoL (48% of the sample), 2. a group with a poor physical QoL (28%), and 3. a group with a poor QoL in all domains assessed by the RAND-36 (24%). The group with a relatively good QoL had more favourable medical characteristics than the other groups, i.e., less chronic diseases, shorter illness duration, more stable course of illness, better controllable conditions, less polypharmacy. The group with a poor QoL in all domains could rely on less personal resources (education, income, social support, health literacy, self-management capabilities) than the other groups. CONCLUSIONS: Different subgroups of people with multimorbidity can be distinguished based on their needs for care and support. These needs are not only determined by demographic and medical characteristics, but also by the personal resources people have available to manage their health and care. Patient profiles combining medical complexity and personal resources could guide the development of integrated care for specific target groups of persons with multimorbidity.

Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.

BACKGROUND: In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. METHODS: Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. RESULTS: A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. CONCLUSIONS: Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs.

Health literacy and primary health care use of ethnic minorities in the Netherlands.

BACKGROUND: In the Netherlands, ethnic minority populations visit their general practitioner (GP) more often than the indigenous population. An explanation for this association is lacking. Recently, health literacy is suggested as a possible explaining mechanism. Internationally, associations between health literacy and health care use, and between ethnicity and health literacy have been studied separately, but, so far, have not been linked to each other. In the Netherlands, some expectations have been expressed with regard to supposed low health literacy of ethnic minority groups, however, no empirical study has been done so far. The objectives of this study are therefore to acquire insight into the level of health literacy of ethnic minorities in the Netherlands and to examine whether the relationship between ethnicity and health care use can be (partly) explained by health literacy. METHODS: A questionnaire was sent to a sample of 2.116 members of the Dutch Health Care Consumer Panel (response rate 46%, 89 respondents of non-western origin). Health literacy was measured with the Health Literacy Questionnaire (HLQ) which covers nine different domains. The health literacy levels of ethnic minority groups were compared to the indigenous population. A negative binomial regression model was used to estimate the association between ethnicity and GP visits. To examine whether health literacy is an explaining factor in this association, health literacy and interaction terms of health literacy and ethnicity were added into the model. RESULTS: Differences in levels of health literacy were only found between the Turkish population and the indigenous Dutch population. This study also found an association between ethnicity and GP visits. Ethnic minorities visit their GP 33% more often than the indigenous population. Three domains of the HLQ (the ability to navigate the health care system, the ability to find information and to read and understand health information) partly explained the association between ethnicity and GP visits. CONCLUSIONS: In general, there are no differences in health literacy between most of the ethnic minority groups in the Netherlands and the indigenous Dutch population. Only the Turkish population scored significantly lower on several health literacy domains. Some domains of health literacy do explain the association between ethnicity and higher frequency of GP visits. Further research is recommended to understand the pathways through which health literacy impacts health care use.

The impact of comorbid chronic conditions on quality of life in type 2 diabetes patients.

OBJECTIVE: To study the prevalence, impact and dose-response relationship of comorbid chronic conditions on quality of life of type 2 diabetes patients. RESEARCH DESIGN AND METHODS: Cross-sectional data of 1676 type 2 diabetes patients, aged 31-96 years, and treated in primary care, were analyzed. Quality of life (QoL) was measured using the mental component summary (MCS) and the physical component summary (PCS) scores of the Short Form-12. Diagnosis of type 2 diabetes was obtained from medical records and comorbidities from self-reports. RESULTS: Only 361 (21.5%) of the patients reported no comorbidities. Diabetes patients with comorbidities showed significantly lower mean difference in PCS [-8.5; 95% confidence interval (CI) -9.8 to -7.3] and MCS scores (-1.9; 95% CI -3.0 to -0.9), compared to diabetes patients without. Additional adjustments did not substantially change these associations. Both MCS and PCS scores decrease significantly with the number of comorbid conditions, yet most pronounced regarding physical QoL. Comorbidities that reduced physical QoL most significantly were retinopathy, heart diseases, atherosclerosis in abdomen or legs, lung diseases, incontinence, back, neck and shoulder disorder, osteoarthritis and chronic rheumatoid arthritis, using the backwards stepwise regression procedure. CONCLUSION: Comorbidities are highly prevalent among type 2 diabetes patients and have a negative impact on the patient's QoL. A strong dose-response relationship between comorbidities and physical QoL was found. Reduced physical QoL is mainly determined by musculoskeletal and cardiovascular disorders.

Health literacy in Europe: the development and validation of health literacy prediction models.

BACKGROUND: Health literacy is an important determinant of health, but national health literacy levels are known for only some European countries. This study aims to examine to what extent national health literacy levels can be estimated based on publicly available census data. METHOD: Multivariate models were used to predict two types of health literacy on population level. Predictors were selected based on literature, the European Health Literacy Survey (HLS-EU) and the Adult Literacy and Life Skills Survey (ALL). The HLS-EU provides insight into self-assessed health literacy and the ALL into the performance of individuals on health literacy tasks (performance-based health literacy). Dutch HLS-EU and ALL data were used to construct prediction models based on 2/3 of this data, which were validated in the remaining 1/3 of the data and (in case of self-assessed health literacy) in data from seven other European countries. RESULTS: Education is a significant predictor of perceived and performance-based health literacy. Age and working status are significant predictors of performance-based health literacy, whereas gender and income are significant predictors of self-assessed health literacy. Both typologies of health literacy can satisfactorily be predicted within samples of the Dutch population. The accuracy of estimated self-assessed health literacy varied between the seven other European countries. CONCLUSION: Prediction models based on publicly available census data can be used for estimating self-assessed and performance-based health literacy on population level. Observed health literacy levels or better prediction models are required when one is interested in ranking European countries.

Health literacy and informed decision making regarding colorectal cancer screening: a systematic review.

Making an informed decision about participation in colorectal cancer (CRC) screening may be challenging for invitees with lower health literacy skills. The aim of this systematic review is to explore to what extent the level of a person's health literacy is related to their informed decision making concerning CRC screening. We searched for peer-reviewed studies published between 1950 and May 2013 in MEDLINE, EMBASE, SciSearch and PsycINFO. Studies were included when health literacy was studied in relation to concepts underpinning informed decision making (awareness, risk perception, perceived barriers and benefits, knowledge, attitude, deliberation). The quality of the studies was determined and related to the study results. The search returned 2254 papers. Eight studies in total were included, among which seven focused on knowledge, four focused on attitudes or beliefs concerning CRC screening, and one focused on risk perception. The studies found either no association or a positive association between health literacy and concepts underpinning informed decision making. Some studies showed that higher health literacy was associated with more CRC screening knowledge and a more positive attitude toward CRC screening. The results of studies that obtained a lower quality score were no different than studies that obtained a higher quality score. In order to obtain more insight into the association between health literacy and informed decision making in CRC cancer screening, future research should study the multiple aspects of informed decision making in conjunction instead of single aspects.

Associations among health literacy, diabetes knowledge, and self-management behavior in adults with diabetes: results of a dutch cross-sectional study.

Various studies have examined the association between health literacy and self-management behavior, but few have explored ways through which this occurs. The present study examines to what extent health literacy is associated with diabetes self-management behavior and to what extent diabetes knowledge is a mechanism in this association. The study was based on cross-sectional data retrieved from patient registrations and questionnaires completed in 2010. The sample included 1,714 predominantly type 2 diabetes patients, with a mean age of 67 years. Diabetes self-management was indicated by HbA1c level, glucose self-control and self-reported monitoring of glucose levels, physical activity, and smoking. Multilevel analyses were applied based on multiple imputed data. Lower health literacy was significantly associated with less diabetes knowledge, higher HbA1c level, less self-control of glucose level, and less physical activity. Participants with more diabetes knowledge were less likely to smoke and more likely to control glucose levels. Diabetes knowledge was a mediator in the association between health literacy and glucose self-control and between health literacy and smoking. This study indicates that higher health literacy may contribute to participation in certain self-management activities, in some cases through diabetes knowledge. Diabetes knowledge and health literacy skills may be important targets for interventions promoting diabetes self-management.

Predicting unplanned admissions to hospital in older adults using routinely recorded general practice data: development and validation of a prediction model.

BACKGROUND: Unplanned admissions to hospital represent a hazardous event for older people. Timely identification of high-risk individuals using a prediction tool may facilitate preventive interventions. AIM: To develop and validate an easy-to-use prediction model for unplanned admissions to hospital in community-dwelling older adults using readily available data to allow rapid bedside assessment by GPs. DESIGN AND SETTING: This was a retrospective study using the general practice electronic health records of 243 324 community-dwelling adults aged ≥65 years linked with national administrative data to predict unplanned admissions to hospital within 6 months. METHOD: The dataset was geographically split into a development (n = 142 791/243 324, 58.7%) and validation (n = 100 533/243 324, 41.3%) sample to predict unplanned admissions to hospital within 6 months. The performance of three different models was evaluated with increasingly smaller selections of candidate predictors (optimal, readily available, and easy-to-use models). Logistic regression was used with backward selection for model development. The models were validated internally and externally. Predictive performance was assessed by area under the curve (AUC) and calibration plots. RESULTS: In both samples, 7.6% (development cohort: n = 10 839/142 791, validation cohort: n = 7675/100 533) had ≥1 unplanned hospital admission within 6 months. The discriminative ability of the three models was comparable and remained stable after geographic validation. The easy-to-use model included age, sex, prior admissions to hospital, pulmonary emphysema, heart failure, and polypharmacy. Its discriminative ability after validation was AUC 0.72 (95% confidence interval = 0.71 to 0.72). Calibration plots showed good calibration. CONCLUSION: The models showed satisfactory predictive ability. Reducing the number of predictors and geographic validation did not have an impact on predictive performance, demonstrating the robustness of the model. An easy-to-use tool has been developed in this study that may assist GPs in decision making and with targeted preventive interventions.

Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data.

Introduction: This paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support. Methods: This paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability). Results: The linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources. Conclusions: A key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data.

Potentially Inappropriate Medication in Older Persons With Dementia: Does a Migration Background Matter?

OBJECTIVES: Previous research in the general population shows more potentially inappropriate medications (PIMs) among persons with a migration background compared with persons without a migration background. This study investigated the association between non-Western (nw) migration background (MB) and dementia-specific PIMs in older adults with dementia in the Netherlands. DESIGN: Cohort study using routinely recorded electronic health records and administrative data. SETTING AND PARTICIPANTS: Electronic health record data of general practitioners from the NIVEL-Primary Care Database, were linked to registries managed by Statistics Netherlands (2013-2014). A total of 9055 community-dwelling older adults with dementia were included, among whom 294 persons had an nw-MB from Africa, South America, or Asia, based on their country of birth. METHODS: We determined the presence of dementia-specific PIM prescriptions and compared this between persons with an nw-MB and without an MB, using logistic regression analysis adjusted for follow-up time, age, registered sex, and total number of prescriptions. Interaction effects of potentially relevant covariates were tested. The 3 largest nw-MB groups in the Netherlands were analyzed separately. RESULTS: Dementia-specific PIMs were less frequently prescribed to persons with an nw-MB compared to persons without an MB with a dementia diagnosis [30.6% vs 34.4%, odds ratio (OR) 0.71, 95% CI 0.54-0.92], with especially less often a benzodiazepine prescription in the group with an nw-MB, compared to persons without an MB (15.0% vs 19.3%, OR 0.61, 95% CI 0.43-0.84). Dementia duration, living alone, household income, and degree of urbanization did not influence the associations. CONCLUSIONS AND IMPLICATIONS: Among older adults with dementia in the Netherlands, persons with an nw-MB had less often a dementia-specific PIM prescription compared to persons without an MB. Whether this difference is a reflection of better quality of care, higher professional uncertainty, or less recognition of (mental) health problems in persons with an nw-MB and dementia, needs further investigation.

Health literacy of Dutch adults: a cross sectional survey.

BACKGROUND: Relatively little knowledge is available to date about health literacy among the general population in Europe. It is important to gain insights into health literacy competences among the general population, as this might contribute to more effective health promotion and help clarify socio-economic disparities in health. This paper is part of the European Health Literacy Survey (HLS-EU). It aims to add to the body of theoretical knowledge about health literacy by measuring perceived difficulties with health information in various domains of health, looking at a number of competences. The definition and measure of health literacy is still topic of debate and hardly any instruments are available that are applicable for the general population. The objectives were to obtain an initial measure of health literacy in a sample of the general population in the Netherlands and to relate this measure to education, income, perceived social status, age, and sex. METHODS: The HLS-EU questionnaire was administered face-to-face in a sample of 925 Dutch adults, during July 2011. Perceived difficulties with the health literacy competences for accessing, understanding, appraising and applying information were measured within the domains of healthcare, disease prevention and health promotion. Multiple linear regression analyses were applied to explore the associations between health literacy competences and education, income, perceived social status, age, and sex. RESULTS: Perceived difficulties with health information and their association with demographic and socio-economic variables vary according to the competence and health domain addressed. Having a low level of education or a low perceived social status or being male were consistently found to be significantly related to relatively low health literacy scores, mainly for accessing and understanding health information. CONCLUSIONS: Perceived difficulties with health information vary between competences and domains of health. Health literacy competences are associated with indicators of socio-economic position and with the domain in which health information is provided.

Is retirement good for your health? A systematic review of longitudinal studies.

BACKGROUND: Several studies regarding the effect of retirement on physical as well as mental health have been performed, but the results thereof remain inconclusive. The aim of this review is to systematically summarise the literature on the health effects of retirement, describing differences in terms of voluntary, involuntary and regulatory retirement and between blue-collar and white-collar workers. METHODS: A search for longitudinal studies using keywords that referred to the exposure (retirement), outcome (health-related) and study design (longitudinal) was performed using several electronic databases. Articles were then selected for full text analysis and the reference lists of the selected studies were checked for relevant studies. The quality of the studies was rated based on predefined criteria. Data was analysed qualitatively by using a best evidence synthesis. When possible, pooled mean differences and effect sizes were calculated to estimate the effect of retirement on health. RESULTS: Twenty-two longitudinal studies were included, of which eleven were deemed to be of high quality. Strong evidence was found for retirement having a beneficial effect on mental health, and contradictory evidence was found for retirement having an effect on perceived general health and physical health. Few studies examined the differences between blue- and white-collar workers and between voluntary, involuntary and regulatory retirement with regards to the effect of retirement on health outcomes. CONCLUSIONS: More longitudinal research on the health effects of retirement is needed, including research into potentially influencing factors such as work characteristics and the characteristics of retirement.

The relationship between health, education, and health literacy: results from the Dutch Adult Literacy and Life Skills Survey.

Health literacy has been put forward as a potential mechanism explaining the well-documented relationship between education and health. However, little empirical research has been undertaken to explore this hypothesis. The present study aims to study whether health literacy could be a pathway by which level of education affects health status. Health literacy was measured by the Health Activities and Literacy Scale, using data from a subsample of 5,136 adults between the ages of 25 and 65 years, gathered within the context of the 2007 Dutch Adult Literacy and Life Skills Survey. Linear regression analyses were used in separate models to estimate the extent to which health literacy mediates educational disparities in self-reported general health, physical health status, and mental health status as measured by the Short Form-12. Health literacy was found to partially mediate the association between low education and low self-reported health status. As such, improving health literacy may be a useful strategy for reducing disparities in health related to education, as health literacy appears to play a role in explaining the underlying mechanism driving the relationship between low level of education and poor health.

What Facilitates or Hampers Living at Home With Advanced Dementia Until the End of Life? A Qualitative Study Using Retrospective Interviews Among Family Caregivers, General Practitioners, and Case Managers.

This study provides insight into circumstances that facilitate or hamper living at home with advanced dementia until the end of life. Interviews were held with 11 bereaved family caregivers, two general practitioners, and nine case managers, related to a total of 12 persons with advanced dementia who had recently died. Persons with dementia who lived at home until the end of life often had family caregivers that received timely support from professionals and their social network. In the cases where the person with dementia could not live at home until the end of life, safety issues, severely challenging behavior, and high care dependency of the person with dementia played key roles. Case management and a continuous process of advance care planning will improve the chance that the end-of-life setting is in accordance with the key values and needs of both the person with dementia and family caregivers.

Knowledge About Dementia Among Family Caregivers With a Turkish or Moroccan Immigrant Background: Development and Validation of a Dementia Knowledge Scale.

OBJECTIVE: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background. METHODS: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach's α. The known group validity was determined by comparing mean scores between subgroups. RESULTS: Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not. CONCLUSIONS: The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background. PRACTICE IMPLICATIONS: The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups.

Occurrence and Timing of Advance Care Planning in Persons With Dementia in General Practice: Analysis of Linked Electronic Health Records and Administrative Data.

Background: Advance care planning (ACP) is a process of communication in which patients and family caregivers discuss preferences for future care with the healthcare team. For persons with dementia, it is crucial to timely engage in ACP. Therefore, we study ACP in dementia using electronic health record data. This study aims to determine how often ACP conversations are recorded, analyze time from dementia diagnosis until the first recorded conversation and time from the first recorded conversation to death, and analyze which factors are associated with the timing of ACP. Methods: Electronic records of 15,493 persons with dementia in Dutch general practice between 2008 and 2016 were linked to national administrative databases. ACP conversations and indicators of health deficits to determine frailty were obtained from electronic records coded with the International Classification of Primary Care. Socio-demographic characteristics were derived from the national population registry managed by Statistics Netherlands. Date of death was derived from the Personal Records Database (2008-2018). Results: ACP was recorded as such as 22 (95% CI, 20-23) first conversations per 1,000 person-years of follow-up. The hazard ratio (HR) for the first conversation increased every year after dementia diagnosis, from 0.01 in the first year to 0.07 in the 7th and 8th year after diagnosis. Median time from a first conversation to death was 2.57 years (95% CI, 2.31-2.82). Migrant status [non-Western vs. Western (HR 0.31, 95% CI, 0.15-0.65)] was significantly associated with a longer time from dementia diagnosis to the first conversation. Being pre-frail (HR 2.06, 95% CI, 1.58-2.69) or frail (HR 1.40, 95% CI, 1.13-1.73) vs. non-frail was significantly associated with a shorter time from dementia diagnosis to the first ACP conversation. Conclusion: ACP conversations in Dutch general practice were rare for persons with dementia, or was rarely recorded as such. In particular among persons with a non-Western migration background and those who are non-frail, it started long after diagnosis. We advise further research into public health and practical strategies to engage persons with dementia with a non-Western migration background and non-frail persons early in the disease trajectory in ACP.