Pathways of care: a qualitative study of barriers and facilitators to engaging dementia care among underserved and minority populations in the US and Germany.

OBJECTIVE: To identify barriers and facilitators to the use of formal dementia services among underserved and minority groups (UMG) in the United States and Germany. METHOD: Semi-structured qualitative interviews with caregivers (N = 18) of persons with dementia in the United States and Germany. Data were analyzed using thematic analysis. RESULTS: Caregivers described their experiences in three stages of seeking, initiating, and utilizing care, and different factors served to hinder or enable the use of care services in each stage. The most important factors included limited knowledge about dementia, challenges interacting with healthcare systems, and how closely formal services met the expectations and needs of caregivers, particularly with regard to accommodating cultural or ethnic/racial identity. Caregivers preferred interacting with service care providers who shared a similar identity to receive information or services. CONCLUSION: Barriers and facilitators to using dementia care services vary by stage of engaging services and may be shared across different healthcare contexts. Targeting specific barriers and strengthening facilitators could help reduce disparities in dementia care among UMG.

Structures for the care of people with dementia: a European comparison.

BACKGROUND: Dementia is a disease that impacts people with dementia, their families, and the healthcare system. In 2018, the number of people with dementia in the EU, the European Free Trade Association (EFTA), and the UK was estimated to be 9.1 million. National dementia strategies and publications by organisations such as Alzheimer Europe outline how dementia-specific care should be designed. This study aims to provide insights into existing formal care structures, models of good practise, and gaps in dementia-specific care for people with dementia in 17 European countries. METHODS: The research is based on guided interviews with country-specific care experts. A mixed-methods approach with a combination of open and closed questions was used. All interviews were recorded and transcribed verbatim based on the transcription rules of Kuckarts (2010). For data evaluation, the qualitative content analysis model of Mayring (2014) was used. RESULTS: In all 17 countries, efforts for dementia-friendly care and models of good care practise exist. However, there are large differences between European countries regarding the spread of dementia-specific services. In nine countries (Bulgaria, Finland, Italy, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), there are already nationwide structures, while in five countries (Belgium, Greece, Ireland, Portugal, Romania), services are only available in certain regions. In three countries (Austria, Denmark, Germany) dementia-specific outpatient services are widespread nationwide, whereas inpatient services are not. Simultaneously, in all countries, areas with major care gaps exist. Several European states have an urgent need for action concerning the expansion of the provision of dementia-specific services, the reduction of regional differences regarding the provision of care, the elimination of barriers to access to care, the dementia-friendliness of services, and the participation of people with dementia and their relatives in care and research. CONCLUSIONS: To reduce the existing structural inequalities in care between and within European countries, and to establish quality-related minimum standards in the care of people with dementia, transnational concepts are needed. The EU, in cooperation with care planners, research institutions, care providers, and patient organisations, should develop European care guidelines or dementia plans that contain concrete measures, schedules, and budgets.

Dementia and migration: culturally sensitive healthcare services and projects in Germany : A scoping review.

BACKGROUND: There are approximately 96,500 people with a migration background (PwM) with dementia in Germany. They and their families face not only dementia-related challenges but also the challenge of having little knowledge about the healthcare system and its services and thus more difficulty in accessing support. Germany's national dementia strategy recognises these individuals as a risk group and thus aims to expand the provision of culturally sensitive information and healthcare services. OBJECTIVE: To determine the amount of culturally sensitive information and healthcare services as well as projects on dementia and migration. METHOD: With a scoping review the PsycInfo, PsycArticles and Psychology & Behavioral Sciences Collection databases, Google Search, the network map (Netzwerkkarte on the website www.demenz-und-migration.de ) and the websites of various research funding bodies were used to find culturally sensitive information and healthcare services as well as current projects on dementia and migration. RESULTS: Listed are 45 care services as well as 3 additional projects that deal with dementia and migration at the local level. The geographical distribution of the offers shows that most of the services can be found in federal states where most PwM with dementia live. DISCUSSION: It is necessary to provide information and healthcare services in all regions and to adapt them to PwM. Different aspects and culturally sensitive measures are important when informing PwM with dementia, as such information can enable these individuals to access the healthcare system and help to provide them with care. It is important to bring together relevant stakeholders to provide access and services that improve the situation of PwM with dementia and their families.

Intersectionality and its relevance for research in dementia care of people with a migration background.

BACKGROUND: Despite the care and support needs of migrants affected by dementia differing from the population of the country where they live now, most European countries do not provide specific strategies to address migration in their national dementia plans. The concept of intersectionality provides an innovative approach to dementia care perspectives and methodologies. OBJECTIVE: The aim is to define intersectionality and to provide examples of applying the concept to dementia care research, focusing on people with a migration background. METHODS: This article was conceptualized and discussed during virtual INTERDEM taskforce meetings in 2020/2021, while discussing identified literature on intersectionality, migration, and dementia care research. RESULTS: Using an intersectionality framework allows understanding of a person's lived experience by considering the dimensionality, co-occurrence and interlocking of factors (e.g., sex/gender, socioeconomic status, ethnicity, migration status, geographic location/place). CONCLUSION: Intersectionality can be applied as a conceptual and methodological approach to identify and address gaps in perspectives and in (dementia care) research to overcome the threat of ignorance, exclusion and discrimination.

The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe.

In a just society, everyone should have equal access to healthcare in terms of prevention, assessment, diagnosis, treatment and care. Europe is a multicultural society made up of people who identify with a wide range of ethnic groups. Many older people from minority ethnic groups also have a direct migration background. Several studies have shown that there is a lack of equity in relation to dementia diagnoses and care because equal opportunities do not necessarily translate into equal outcomes. An expert ethics working group led by Alzheimer Europe has produced an extensive report on this issue, a policy brief and a guide for health and social care workers. In this brief summary, the authors/members of the expert working group present some of the key challenges and recommendations for healthcare clinicians striving to provide timely diagnosis and good quality care and treatment to people with dementia from all ethnic groups.

Burden of caregivers of patients with frontotemporal lobar degeneration - a scoping review.

BACKGROUND: Frontotemporal lobar degeneration (FTLD) is the second-most common cause of young-onset dementia. Personality and behavior changes lead to high caregiver stress and burden, but little support is available. Our aim is to present the evidence on the characteristics, challenges and unmet needs of caregivers as well as on possible interventions. METHODS: We conducted a scoping review on caregiver burden using PubMed, Web of Science and ScienceDirect. A total of 69 articles were considered eligible and were analyzed in the present study. RESULTS: Through the analysis of 69 empirical articles, our results show that caregivers of patients with FTLD are often younger in age, have children and find behavioral disturbances to be the most burdensome. Nine studies assessed the needs of and support for caregivers. Ten studies compared the burden in different forms of FTLD, 19 compared FTLD to other types of dementia, and one compared the caregiver burden between two countries. Eight studies reported on interventions for caregivers or interventions taking burden into account. One study assessed the support structure for caregivers of FTLD patients. Five case reports, eight research overviews and three reviews addressed specific needs and challenges. CONCLUSIONS: Further research should reproduce and validate efficacious interventions and focus on underage children of FTLD patients and findings from non-Western countries. Additionally, support structures for FTLD caregivers should be assessed and extended. Awareness both in the wider population and among healthcare professionals is an urgent need for the future.

How is migration background considered in the treatment and care of people? A comparison of national dementia care guidelines in Europe.

BACKGROUND: People with a migration background are vulnerable to dementia. Due to problems such as underdiagnosis or access barriers, the care of this population is a public health challenge in Europe. Many countries are issuing care guidelines, but a systematic overview of their references to migration groups is lacking. This study aims to analyze national dementia care guidelines regarding their focus on people with a migration background, what specific actions to ensure healthcare have been undertaken at the national level, and whether recommendations for action are made for this population. METHODS: This study is a systematic analysis of national dementia care guidelines of the EU and EFTA (European Free Trade Association) countries. Using the discourse analysis model by Keller (2011), 43 documents from 24 EU and 3 EFTA countries were systematically screened for migration references via keyword and context analysis. The content of the migration-related section was paraphrased, memos and comments were added, and the individual text passages were coded using the strategy of open coding. RESULTS: Twenty-seven of the 35 EU and EFTA countries have guidelines or similar documents on care for people with dementia, and 12 refer to migration. Norway, Sweden, and Northern Ireland refer to this topic in detail. The focus of the migration-related guidelines is on the early detection and diagnosis of dementia. The main message is that standardized diagnostic tools such as the MMSE (Mini-Mental State Examination) or the clock test are not suitable for linguistic minorities. Nine countries make recommendations for the care of people with a migration background and dementia, but only Norway, Sweden, and Denmark point to available healthcare services. A key recommendation is that the linguistic and cultural background of people should be considered when selecting diagnostic tests. Several countries refer to the validity of the RUDAS (Rowland Universal Dementia Assessment Scale) for migrants. CONCLUSIONS: The topic of migration plays a subordinate role in the dementia care guidelines of European countries. Almost all countries lack appropriate diagnostic tools and healthcare services for people with a migration background. Consequently, this group is vulnerable to underdiagnosis and a lower level of care.

Comparing national dementia plans and strategies in Europe - is there a focus of care for people with dementia from a migration background?

BACKGROUND: People with migration background and dementia are a vulnerable group. Providing care for this group is a public health challenge in Europe. An increasing number of countries are issuing national dementia plans, but a systematic overview of national dementia plans of European countries focusing on care for people with migration background is lacking. This study aims to illustrate how European countries identify the dementia-related needs of people with migration background and whether there are specific healthcare services for them at the national level. METHODS: A qualitative analysis of national dementia plans of the EU and EFTA (European Free Trade Association) countries was carried out. Using the discourse analysis model according to Rainer Keller (2011), documents were systematically screened for their relation to migration via keyword and context analysis. The content of the migration-related sections was analyzed using the methods of paraphrasing, memos, comments, and open coding. RESULTS: Twenty-three of the 35 EU and ETFA countries have a national dementia plan, ten of these documents refer to migration and one country (Austria) has a national dementia plan with a chapter on migration. Eight national dementia plans identify that people with migration background and dementia have special needs, and actions to care for this group are planned in nine countries. However, only Norway, Northern Ireland, and the Netherlands refer to available healthcare services for people with migration background. Overall, the topic of migration plays a subordinate role in the national dementia plans of European countries. CONCLUSIONS: The current lack of migrant-specific healthcare services in almost all European countries may lead to denying the right to appropriate care to a growing population. The topic of migration must be given greater attention in national dementia plans. European countries should develop strategies with specific services that address the needs of people with migration background. To improve comparability at the European level, a common definition of migration is needed. Further studies should include country-specific problems related to dementia and migration.

Why do family dementia caregivers reject caregiver support services? Analyzing types of rejection and associated health-impairments in a cluster-randomized controlled intervention trial.

BACKGROUND: Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers' unmet needs and a lack of acknowledgement of caregivers' unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers' rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver's rejection of both people with dementia (PwD) and caregivers, and (c) caregivers' health-related variables related to caregivers' rejection. METHODS: Caregivers' rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch's t-test, Pearson's product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data. RESULTS: In sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers' rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers' rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers' rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17). Furthermore, our results showed that the number of caregivers' rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers. CONCLUSIONS: Our results underline the importance of understanding factors that determine caregivers' rejection of support services. These need to be specifically addressed in tailored solutions for caregivers' support services. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

[Self-determination despite dementia! Participant protection instead of incapacitation in research : Report on the 5th Ethics Conference of the German Center for Neurodegenerative Diseases]. / Selbstbestimmung trotz Demenz! Probandenschutz statt Entmündigung in der Forschung : Tagungsbericht zur 5. Ethiktagung des Deutschen Zentrums für Neurodegenerative Erkrankungen (DZNE) Rostock/Greifswald.

In March 2019 the Ethics Conference of the German Center for Neurodegenerative Diseases (DZNE) was held for the fifth time. It was organized by the DZNE Rostock/Greifswald site and chaired by Prof. Wolfgang Hoffmann. The conference provided scientists, physicians, representatives of the German Alzheimer Society, (informal) caregivers of people with dementia (PwD), and other interested people with the opportunity to talk about the opportunities and limitations of research on and for PwD.Nationally and internationally recognized experts on healthcare services research, clinical research, nursing research, (geriatric) psychiatry, interdisciplinary ageing research, economic law, and psychotherapy discussed the pros and cons of a multitude of topics like self-determination, research participant decree, informed consent, and participation of PwD in research. The aim of the event was to reconcile the view of practice pleading for an ethically correct, human treatment of PwD and respecting their autonomy with participation in (clinical) studies. Experts controversially discussed and consolidated different points of view of practice and research.

[Prevalence of dementia in people with a migration background in Germany]. / Prävalenz von Demenz bei Menschen mit Migrationshintergrund in Deutschland.

BACKGROUND: In Germany the number of people with a migration background was 16.5 million people in 2013 with 9% being older than 65 years. In this population utilization of health services is low, especially in older people, although they often display worse health outcomes. Little is known about the number of people with dementia and migration background in Germany and their distribution on the state level, resulting in a challenge that is barely assessable for the healthcare system. OBJECTIVE: The depiction of the prevalence of dementia in people with a migration background for Germany and the individual federal states. METHOD: The number of people with a migration background and dementia living in Germany and the individual federal states was estimated for different ethnic groups using country and state-specific data on the population, dementia frequency and age-specific prevalence. RESULTS: Out of 1.86 million people with a migration background who are 65 years or older, approximately 96,500 persons (5.2%) have dementia. The majority are of European (84,490), more specifically Polish (13,960), Italian (8920) and Turkish (8840) heritage. North Rhine-Westphalia (26,000), Baden-Wuerttemberg (18,080) and Bavaria (16,710) are presumed to show the highest rates of people affected. CONCLUSION: In Germany people with a migration background and dementia represent a large target group for health care; however, the numbers and ethnic populations affected differ considerably between states. These analyses can be used for state-specific healthcare planning of culture-specific and culture-sensitive services and care so that specific healthcare improvements can be achieved.

Implementing a physical activity project for people with dementia in Germany-Identification of barriers and facilitator using consolidated framework for implementation research (CFIR): A qualitative study.

BACKGROUND: Despite physical activity (PA) health benefits, people with dementia (PwD) continue to report low levels of PA engagement compared with healthy older adults. Evidencing that PA initiatives still not reflect effective practice and outcomes. Previous studies have shown that several factors can mediate PA initiatives implementation in this population. However, most prior research have not use implementation science frameworks to outline in-depth barriers and facilitators that enables improved PA strategies in PwD. Therefore, a more holistic understanding of mediating factors is still needed. OBJECTIVE: To identify multilevel barriers and facilitator factors, applying the Consolidated Framework for Implementation Research (CFIR) to orient a systematic evaluation of one PA project in PwD and provide evidence-based evaluation results to enhance PA implementation efforts for PwD. METHOD: A qualitative study implemented in 4 German sports associations that applied a PA project for PwD. A total of 13 semi-structured interviews were conducted with 21 participants, project leaders (PLs) and sports trainers (STs). The Consolidated Framework for Implementation Research (CFIR) was used as an evaluation framework to orient both the data collection and analysis. RESULTS: A total of 13 interviews were conducted with 21 participants. The CFIR guided the identification of barriers and facilitating factors that need to be targeted at different levels for successful implementation. Barriers were identified, especially in the external level, as more solid networks and funding for sustainable proposals are still needed. Other barriers were low participation rates, stigma around the disease and the COVID 19 pandemic. On an individual and structural level facilitators were found like motivated appointed leaders, established planning process, and external organizations supporting sports associations in the implementation. CONCLUSION: Sports projects for PwD can benefit from structuring their interventions based on the CFIR framework as it helps identify multilevel factors that may influence their success and promote PA among PwD. Future efforts should continue working on implementing frameworks that facilitate and reduce the complexity of implementing sustainable PA projects for PwD.

Intercultural care for people of migrant origin with dementia - A literature analysis.

BACKGROUND: Close to 12 million people of migrant origin who are 65 years or older live in different European countries. In the European Union (EU) and the European Free Trade Association (EFTA) countries, approximately half a million are estimated to have dementia. This rate is expected to increase in the coming decades. People of migrant origin who develop dementia and their families face challenges people without migration backgrounds do, but due to cultural differences, additional challenges may arise. There is an increasing need for interculturally sensitive care. There is research on certain aspects of intercultural care and this study will be a comprehensive summary of current topics in intercultural care. RESEARCH QUESTION: What factors of intercultural care for people of migrant origin with dementia can be identified? What requirements and aspects are necessary to ensure intercultural care? METHOD: A systematic literature analysis in the databases PubMed, PsycInfo and Psychology and Behavioural Sciences Collection was conducted. FINDINGS: Thirty-nine articles were eligible for analysis. Enhancement in the areas diagnostics, education and information, healthcare services and healthcare professionals to ensure intercultural care is needed. DISCUSSION: Current evidence supports the need for (a) thorough education of people of migrant origin with dementia, their families and healthcare professionals, (b) collaborations among everyone involved, (c) embracing different cultures in healthcare services, (d) the implementation of a care navigator functioning as a contact person and connecting all relevant parties with one another and (e) dementia testing suitable to the target group to ensure culturally sensitive and appropriate care for people of migrant origin with dementia and their families.

Dementia Caregivers' Experiences Engaging Supportive Services While Residing in Under-Resourced Areas.

BACKGROUND: Family caregivers of people living with dementia benefit from supportive service use to address care needs associated with caregiving. Yet, research consistently demonstrates low rates of service use. Existing research has focused on barriers and facilitators to service use, with few studies examining the influence of caregivers' environmental context which often patterns social advantage and health services accessibility. OBJECTIVE: To describe the perspectives of caregivers residing in socially disadvantaged areas have in regards to utilizing supportive services. METHODS: Ten informal caregivers residing in socially disadvantaged areas participated in in-depth interviews that were analyzed using thematic analysis. RESULTS: Across all interviews, caregivers spontaneously described common precedents of service use (crisis or accumulation of unmet needs) and a distinct sequence of stages (seeking, initiating, and utilizing) surrounding service engagement. Major themes characterizing caregivers' experiences throughout service engagement highlight the varied influence of personal, familial, health, and social system-related factors. Findings demonstrate that caregivers may have different service needs as dementia progresses and that gerontological social work practice can facilitate service use. CONCLUSION: While preliminary, these findings provide important insights into new domains that can be further examined in future research and intervention efforts to improve supportive service use in socially disadvantaged and underserved communities.

Dementia in People with a Turkish Migration Background: Experiences and Utilization of Healthcare Services.

BACKGROUND: As the proportion of older people with migration background (PwM) increases, the proportion of older PwM with dementia might also increase. Dementia is underdiagnosed in this group and a large proportion of PwM with dementia and family caregivers are not properly supported. Healthcare utilization is lower among older migrant populations. Thus, a better understanding of how PwM and family caregivers perceive their situation and how they experience healthcare services is needed to improve utilization of the healthcare system. OBJECTIVE: Analyze how family caregivers of PwM with dementia experience their situation, why healthcare services are utilized less often, and what can be done to reverse this. METHODS: Eight semi-structured interviews were conducted with people with Turkish migration background caring for PwM with dementia. Qualitative content analysis was used for data analysis. RESULTS: Daily care was performed by one family member with the support of others. Healthcare services were used by most participants. Participants identified a need for better access to relevant information and incorporation of Turkish culture into healthcare services. CONCLUSION: PwM face similar challenges in taking care of persons with dementia as those without migration background. There is a willingness to use services, and services embracing Turkish culture would help to reduce hesitance and make affected people feel more comfortable, thereby increasing utilization and satisfaction. A limitation of this study is that participants were already connected to health services, which may not reflect the help-seeking behavior of those in the Turkish community who are not involved in healthcare.

Identifying Unmet Needs of Family Dementia Caregivers: Results of the Baseline Assessment of a Cluster-Randomized Controlled Intervention Trial.

BACKGROUND: Caregivers providing informal care for people with dementia (PwD) often report unmet needs, burden, and health impairments. Optimal support for family dementia caregivers will likely benefit from better understanding and assessment of the prevalence and types of caregivers' unmet needs and associated socio-demographic and clinical characteristics. OBJECTIVE: The present study investigates 1) the number and types of caregivers' unmet needs, 2) socio-demographic and clinical characteristics of both PwD and caregivers, and 3) caregivers' burden and health-related outcomes that are related to caregivers' unmet needs. METHODS: The present analyses are based on cross-sectional data of n = 226 dyads of caregivers and their community-dwelling PwD participating in a comprehensive standardized, computer-based caregivers' needs assessment within a general practitioner (GP)-based, cluster-randomized intervention trial. RESULTS: A total of n = 505 unmet needs were identified for n = 171 caregivers from the intervention group at baseline. Only 24.3% caregivers reported no unmet need (n = 55), whereas 75.7% caregivers had at least one unmet need (n = 171). Caregivers had on average 2.19 unmet needs (mean = 2.19, SD = 2.15). Specifically, 53.1% of caregivers had one up to three unmet needs (n = 120), 18.6% (n = 42) had three up to six unmet needs, and 4.0% (n = 9) had more than six unmet needs. DISCUSSION: Our results underline the importance of a comprehensive needs assessment for family dementia caregivers to develop and implement concepts that can provide family dementia caregivers with optimal support.