Adapting Dementia Care Management to a Regional German Context: Assessment of Changes in Acceptability, Appropriateness, and Feasibility.

Dementia care management, an evidence-based care concept in Germany, optimizes care for people with dementia and their caregivers. Implemented by qualified professionals, it comprises intervention modules addressing treatment and care, medication management, and caregiver support. Positively evaluated in one federal state, it's recommended for nationwide integration into routine care. Since the infrastructure of the German healthcare system differs regionally, the concept underwent adaption for regional implementation in a participatory, iterative process. Five local healthcare experts as co-researchers tested and adjusted selected components of the concept in a pilot study. This trend analysis aims to assess the adapted concept for acceptance, appropriateness, and feasibility. A total of 89 intervention modules were tested over 18 weeks, and the co-researcher's assessment was gathered through an accompanying online survey. The participatory process itself was rated positively overall, but technical problems had a negative impact on the implementation and evaluation of the care concept.

Implementing Dementia Care Management into routine care: protocol for a cohort study in Siegen-Wittgenstein, Germany (RoutineDeCM).

INTRODUCTION: Dementia Care Management is an evidence-based model of care. It has proven its efficacy and cost-effectiveness and has been applied to different settings and different target groups. However, it is not available in routine care in Germany. The scientific evidence has influenced the National Dementia Strategy, in which one measure is to examine the possibility and requirements to implement it into routine care. The aim of this study is to implement Dementia Care Management into routine care in a selected region in Germany and evaluate the effect on participants. METHODS AND ANALYSIS: For the duration of 12 months, n=90 patients and their informal caregivers with cognitive impairment are recruited in different routine settings in primary care (general hospital, physicians' network, ambulatory nursing service, counselling service) by partners in primary care. They receive an adapted Dementia Care Management (DeCM) to the specific setting using participatory methods. DeCM is delivered by specifically qualified dementia care managers and consists of a comprehensive assessment of healthcare needs followed by algorithm-based and person-based support in healthcare planning, implementing and monitoring. The duration of the intervention is 6 months and data assessments are conducted prior to (baseline), at the end of (follow-up 1, FU1) and 6 months after the end of the intervention (follow-up 2, FU2). Primary outcomes are unmet needs at FU1 and FU2. Secondary outcomes are antidementia drug treatment, neuropsychiatric symptoms and caregiver burden at FU1 and FU2. Further outcomes are cognition, frailty and health-related quality of life. A separate process evaluation accompanies the implementation. ETHICS AND DISSEMINATION: The Ethics Committee of University Medicine Greifswald, Germany, has reviewed and approved the study (registration number BB110/22). All participants provide written informed consent prior to participation. The results will be disseminated in regional workshops, press, online media and talks. They will be submitted to international peer-reviewed scientific journals for publication and presented at scientific meetings and conferences. Furthermore, results will be discussed with the funder and presented to the steering committee of the National Dementia Strategy. TRIAL REGISTRATION NUMBER: NCT05529277.

Implementation of dementia care management in routine care (RoutineDeCM): a study protocol for process evaluation.

INTRODUCTION: Dementia care management is a complex intervention intended to support persons with dementia and their (caring) relatives in home-based care arrangements. Dementia care management was developed in the federal state of Mecklenburg-Western Pomerania in Germany and subsequently adapted for the German region of Siegen-Wittgenstein, where it will now be implemented. Four different service providers will carry out the implementation process. This study protocol describes the planned procedures for the parallel evaluation of the implementation process. METHODS AND ANALYSIS: A multiple embedded case study design was chosen for the planned process evaluation. Data collection and analysis will be informed by the Consolidated Framework for Implementation Research, the Expert Recommendations for Implementing Change, the Medical Research Council framework for conducting process evaluations of complex interventions and the Taxonomy of Outcomes for Implementation Research. Information (qualitative and quantitative) will be collected from all stakeholders involved in the dementia care management intervention (ie, dementia care managers, general practitioners, people with dementia). ETHICS AND DISSEMINATION: The process evaluation is conducted in accordance with the Declaration of Helsinki, the recommendations on good scientific practice, the research ethics principles of the Code of Ethics of the German Society of Nursing Science, and on the basis of ethical approval from the Clinical Ethics Committee of University Medicine Greifswald (BB 110/22). The results of the process evaluation will be disseminated through reports to the funders of the study and also as a summary of recommendations for the sustainable implementation of dementia care management for future implementers. We also plan to publish the results of this process evaluation in an international peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT05529277, Registered 7 September 2022, https://beta. CLINICALTRIALS: gov/study/NCT05529277.

Project DECIDE, part II: decision-making places for people with dementia in Alzheimer's disease: supporting advance decision-making by improving person-environment fit.

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer's disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the 'spatial intervention study' of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. METHODS: People with a suspected or confirmed diagnosis of dementia in Alzheimer's disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. DISCUSSION: The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. TRIAL REGISTRATION: DRKS00030799 .

Empowering patients with dementia to make legally effective decisions: a randomized controlled trial on enhancing capacity to consent to treatment.

Objectives: As our society ages, the incidence of age-related diseases increases and with it the number of medical treatments that require informed consent. Capacity to consent is often categorically questioned in persons with dementia (PwD) without appropriate assessment, depriving them of their right to autonomous decision-making. Supportive structures for PwD that comply with legal requirements are lacking. The EmMa project tried to overcome this shortcoming by developing and testing possible supportive measures to enhance the informed consent process for PwD.Method: These enhanced consent procedures (ECPs) were tested in a randomized controlled trial with 40 PwD. It was hypothesized that strengths-based ECPs could improve capacity to consent to a drug treatment in PwD as measured with a semi-structured interview.Results: Against the expectations, no effect of the ECPs on capacity to consent could be found, but the ECPs improved understanding of information in PwD.Conclusion: To empower PwD in clinical settings, however, all aspects of capacity to consent should be targeted with specific aids that are implemented carefully and selectively. More research on possible aids for ECPs is urgently needed in order to enable ethically and legally robust informed consent. In particular, effective ways to improve both reasoning and appreciation are yet to be found.

Project DECIDE, part 1: increasing the amount of valid advance directives in people with Alzheimer's disease by offering advance care planning-a prospective double-arm intervention study.

BACKGROUND: Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer's dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is 'Respecting Choices'®-an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study's aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. METHOD: We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. DISCUSSION: The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691.

[Shared Decision-Making for Patients with Mental Disorders or Cognitive Impairments]. / Shared Decision-Making bei Patient_innen mit psychischen Störungen oder kognitiven Beeinträchtigungen.

Shared Decision-Making for Patients with Mental Disorders or Cognitive Impairments Abstract. Shared Decision-Making (SDM) describes a model of collaborative decision-making that combines the expert knowledge of health professionals and the experiential knowledge of patients. This allows patients to play a more active role in the decision-making process. SDM is also becoming increasingly important in the treatment of persons with mental disorders or cognitive impairments. However, implementation of SDM for this group of patients may face specific challenges, for example, if their decision-making capacity is impaired or if coercion has to be used to prevent acute danger to themselves or others. On the other hand, SDM offers important opportunities in this area. For example, mental health professionals are often more dependent on the patients' experiential knowledge in clinical decision-making than in somatic care. Furthermore, empowerment and a good therapeutic relationship are central aspects in the treatment of people with mental disorders or cognitive impairments, which can be strengthened by SDM. Against the background of these specific challenges, an overview of opportunities for and experiences with SDM in the care of people with mental disorders or cognitive impairments is given. In addition, different approaches for promoting the implementation of SDM for this patient group will be identified.

Adapting a Dementia Care Management Intervention for Regional Implementation: A Theory-Based Participatory Barrier Analysis.

Dementia is a leading cause of disability and dependency in older people worldwide. As the number of people affected increases, so does the need for innovative care models. Dementia care management (DCM) is an empirically validated approach for improving the care and quality of life for people with dementia (PwD) and caregivers. The aim of this study is to investigate the influencing factors and critical pathways for the implementation of a regionally adapted DCM standard in the existing primary care structures in the German region of Siegen-Wittgenstein (SW). Utilizing participatory research methods, five local health care experts as co-researchers conducted N = 13 semi-structured interviews with 22 local professionals and one caregiver as peer reviewers. Data collection and analysis were based on the Consolidated Framework for Implementation Research (CFIR). Our results show that among the most mentioned influencing factors, three CFIR constructs can be identified as both barriers and facilitators: Patients' needs and resources, Relative advantage, and Cosmopolitanism. The insufficient involvement of relevant stakeholders is the major barrier and the comprehensive consideration of patient needs through dementia care managers is the strongest facilitating factor. The study underlines the vital role of barrier analysis in site-specific DCM implementation.

Observational assessment of communication to empower patients with dementia to make legally effective decisions - revalidation of CODEMamb.

Objectives: Communication enables humans to exercise their rights. Dementia research consistently shows that communication skills decrease as the disease progresses. Nonverbal communication abilities decline more slowly than verbal skills and often become more important as the disease advances. However, resources and deficits in nonverbal and verbal communication behavior differ between persons with dementia and contexts. Knebel et al. proposed the observational assessment tool CODEMamb that we believe to be the first standardized instrument to differentiate between content-related and relationship aspects of nonverbal communication behavior. Until now, evaluations of CODEMamb have been exploratory and used small samples.Method: We therefore retested the psychometric criteria of CODEMamb in persons with a suspected dementia in an ambulatory setting. Data was drawn from 326 older adults (aged 52 - 91) during routine screening in Germany.Results: Our findings support the three-factorial structure of CODEMamb. Internal consistency of the overall scale and the three subscales of CODEMamb was high. Correlations with CERAD-NP subscales revealed similarities to CODEMamb, indicating sufficient convergent validity. Finally, CODEMamb was able to differentiate between persons according to the stage of their disease.Conclusion: CODEMamb is a theoretically based, reliable and valid observational assessment tool and its use in ambulatory settings can help foster individual, person-centered communication by identifying the resources of people with dementia, thereby empowering them in rights-exercising situations.

Person-environment fit of environmental support provided during medical consultations with older patients.

As some cognitive functions decline in old age, the ability to decide about important life events such as medical treatment is endangered. Environmental support to improve the comprehension of health-related information is therefore necessary. With a small-scale explorative approach, the present survey study aimed at investigating person-environment fit (PE-fit) of support provided during medical consultations. This fit was calculated by assessing the match between aids provided by five medical practitioners during medical consultations and aids most appreciated by the geriatric patients (N = 88). The results showed that the largest discrepancies of used and appreciated aids could be found concerning the opportunity to discuss decisions with relatives, the possibility to take notes, the use of objects, pictures and a keyword list. Female patients indicated a lower PE-fit. These findings highlight discrepancies between the use of specific aids and the wishes of patients and call for thoughtful use of aids during consultations with geriatric patients.

Supported Decision-Making in Persons With Dementia: Development of an Enhanced Consent Procedure for Lumbar Puncture.

The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.

[Capacity to consent of people with dementia : Insights into the S2k AWMF guidelines 108-001]. / Einwilligungsfähigkeit von Menschen mit Demenz : Einblicke in die S2k-AWMF-Leitlinie 108 ­ 001.

People with dementia often require medical and nursing care and are regularly confronted with the need to make decisions in this respect; however, in practice uncertainty often exists as to whether a person with dementia is capable of providing consent, what procedures should be used to obtain informed consent, how to provide the necessary information and how capacity to consent can be assured. By providing structured practical recommendations, the S2k guidelines "Consent of persons with dementia to medical treatment" (coordinated by the Association of the Scientific Medical Societies of Germany, AWMF, registration number 108-001) provide a first attempt to summarize and update the relevant medical, legal, ethical and psychological requirements that should be satisfied in this respect. This article enables insights into the guidelines and an overview of the most important recommendations.

How do dementia researchers view support tools for informed consent procedures of persons with dementia?

The study aimed to assess how dementia researchers view eight support tools that have been defined to enhance informed consent (IC) procedures for people with dementia (PwD). In an online survey, 19 dementia researchers from Germany and Portugal evaluated the tools in terms of 4 implementation criteria. Overall, they all had a very positive attitude towards the support tools, whereby the tools person-centered attitude of the researcher and elaborated plain language were the most highly rated of the eight tools. Our findings also indicated that familiar support tools were assessed more favorably than those that were previously unknown. Overall, the results of this study showed that the participating dementia researchers were open to the use of decision support measures in PwD and were willing to apply the support tools in practice.

[Capacity to consent of people with dementia : Insights into the S2k AWMF guidelines 108-001]. / Einwilligungsfähigkeit von Menschen mit Demenz : Einblicke in die S2k-AWMF-Leitlinie 108 ­ 001.

People with dementia often require medical and nursing care and are regularly confronted with the need to make decisions in this respect; however, in practice uncertainty often exists as to whether a person with dementia is capable of providing consent, what procedures should be used to obtain informed consent, how to provide the necessary information and how capacity to consent can be assured. By providing structured practical recommendations, the S2k guidelines "Consent of persons with dementia to medical treatment" (coordinated by the Association of the Scientific Medical Societies of Germany, AWMF, registration number 108-001) provide a first attempt to summarize and update the relevant medical, legal, ethical and psychological requirements that should be satisfied in this respect. This article enables insights into the guidelines and an overview of the most important recommendations.

[Healthcare of the future-Insights and strategy for (dementia) health services research]. / Gesundheitsversorgung der Zukunft ­ Erkenntnisse und Strategie der (Demenz­)Versorgungsforschung.

BACKGROUND: Due to the demographic change healthcare for older people is becoming more important. A key strategic document for the near future is the national dementia strategy (NDS), which defines four fields of action including promoting excellent research on dementia. The NDS will guide and influence the further development of dementia healthcare research in the coming years. OBJECTIVE: The current research on specific NDS topics is presented and an outlook on expected developments is given. MATERIAL AND METHODS: This article provides a narrative review in which concepts and examples for selected sections of the NDS are presented: funding and promotion of healthcare research, development of evidence-based prevention and healthcare concepts and transfer into routine care, support for people with dementia (PwD) and their caregiver, cross-sectoral networking, participation in dementia research and networks in healthcare research. These were analyzed with respect to future developments and concretized based on current healthcare and promotion models. RESULTS: Insights are given into the healthcare concept of dementia care management, rethinking regional healthcare models such as medicine and e­health. The innovation fund and research practice networks are described as examples of current structural methods of evidence-based design of future healthcare. CONCLUSION: The NDS represents an ambitious agenda with very comprehensive goals and topics for the improvement of healthcare for PwD and will probably significantly influence healthcare research and thus healthcare in the future. Overarching, mutually influencing and strengthening components on the way to improvement of the situation for PwD and the healthcare system are translation, participation and networking in research.

Communication behavior of cognitively impaired older inpatients : A new setting for validating the CODEM instrument.

BACKGROUND AND OBJECTIVE: Acutely ill older patients with cognitive impairment represent a major subgroup in acute care hospitals. In this context, communication plays a crucial role for patients' well-being, healthcare decisions, and medical outcomes. As validated measures are lacking, we tested the psychometric properties of an observational instrument to assess Communication Behavior in Dementia (CODEM) in the acute care hospital setting. As a novel feature, we were also able to incorporate linguistic and social-contextual measures. MATERIAL AND METHODS: Data were drawn from a cross-sectional mixed methods study that focused on the occurrence of elderspeak during care interactions in two German acute care hospitals. A total of 43 acutely ill older patients with severe cognitive impairment (CI group, Mage ± SD = 83.6 ± 5.7 years) and 50 without cognitive impairment (CU group, Mage ± SD = 82.1 ± 6.3 years) were observed by trained research assistants during a standardized interview situation and rated afterwards by use of CODEM. RESULTS: Factor analysis supported the expected two-factor solution for the CI group, i.e., a verbal content and a nonverbal relationship aspect. Findings of the current study indicated sound psychometric properties of the CODEM instrument including internal consistency, convergent, divergent, and criterion validity. CONCLUSION: CODEM represents a reliable and valid tool to examine the communication behavior of older patients with CI in the acute care hospital setting. Thus, CODEM might serve as an important instrument for researcher and healthcare professionals to describe and improve communication patterns in this environment.

[Capacity to consent to treatment in dementia patients : Interdisciplinary perspectives]. / Einwilligungsfähigkeit bei Demenz : Interdisziplinäre Perspektiven.

BACKGROUND: Currently, there are no concrete, evidence-based default procedures to adequately assess the capacity to consent to medical treatment. This explains why different raters use individual heuristics, differing both within and between disciplines. The lack of a procedure that is standardized, validated, and equally accepted across disciplines to assess the capacity to consent to treatment has led to an uncertainty in legal and medical practice regarding appropriate action and decision making. Due to the dramatic increase in the number of patients with dementia and multimorbidity, who have to regularly consent to various medical treatments but whose capacity to consent is hindered due to cognitive impairments, this topic is particularly timely. OBJECTIVE: The present study aims to investigate how experts of different disciplines (law, medicine, ethics) assess the capacity to consent on the basis of a case study involving a patient with dementia. MATERIALS AND METHODS: The judgements and judgement criteria of 41 experts from various disciplines were surveyed via a self-administered questionnaire that was distributed via postal mail. RESULTS: The results show that experts from various disciplines come to different conclusions regarding the capacity of the patient with dementia to consent. CONCLUSION: These observations lead to the conclusion that there is an urgent need for an interdisciplinary guideline for the assessment of the capacity to consent to treatment, for interdisciplinary training, and for more interdisciplinary exchange in the assessment process.

Assessing capacity to consent to treatment with cholinesterase inhibitors in dementia using a specific and standardized version of the MacArthur Competence Assessment Tool (MacCAT-T).

BACKGROUND: The use of assessment tools has been shown to improve the inter-rater reliability of capacity assessments. However, instrument-based capacity assessments of people with dementia face challenges. In dementia research, measuring capacity with instruments like the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) mostly employ hypothetical treatment vignettes that can overwhelm the abstraction capabilities of people with dementia and are thus not always suitable for this target group. The primary aim of this study was to provide a standardized real informed consent paradigm that enables the dementia-specific properties of capacity to consent to treatment in people with dementia to be identified in a real informed consent process that is both externally valid and ethically justifiable. METHODS: The sample consisted of 53 people with mild to moderate dementia and a group of 133 people without cognitive impairment. Rather than using a hypothetical treatment vignette, we used a standardized version of the MacCAT-T to assess capacity to consent to treatment with cholinesterase inhibitors in people with dementia. Inter-rater reliability, item statistics, and psychometric properties were also investigated. RESULTS: Intraclass correlations (ICCs) (0.951-0.990) indicated high inter-rater reliability of the standardized real informed consent paradigm. In the dementia group, performance on different items of the MacCAT-T varied. Most people with dementia were able to express a treatment choice, and were aware of the need to take a tablet. Further information on the course of the disorder and the benefits and risks of the treatment were less understood, as was comparative reasoning regarding treatment alternatives. CONCLUSION: The standardized real informed consent paradigm enabled us to detect dementia-specific characteristics of patients' capacity to consent to treatment with cholinesterase inhibitors. In order to determine suitable enhanced consent procedures for this treatment, we recommend the consideration of MacCAT-T results on an item level. People with dementia seem to understand only basic information. Our data indicate that one useful strategy to enhance capacity to consent is to reduce attention and memory demands as far as possible.

CODEMamb - an observational communication behavior assessment tool for use in ambulatory dementia care.

INTRODUCTION: Communication improves well-being and quality of life for both people with dementia and their professional and family caregivers. Individualized communication, as required in informed consent procedures and psychosocial interventions, can improve quality of life, especially in ambulatory settings. However, few valid and reliable instruments exist that enable communication to be assessed and communication and behavioral resources to be identified. We, therefore, extended and adapted the newly developed observational instrument CODEM for use in ambulatory settings (CODEMamb). METHODS AND RESULTS: Reliability and validity of the new instrument were studied in a total of 171 patients, whereby principal component analysis revealed three important factors: relationship aspects, verbal communication behavior and nonverbal communication behavior. CODEMamb[Formula: see text]s internal consistency, interrater and retest reliability were satisfactory to excellent. Convergent validity indices, as shown by examining correlations with similar but not identical constructs (CERAD-NP verbal subscales), were medium-high, while the divergent validity index (constructional praxis) was relatively low. The relationship to peer-rating remained nonsignificant. Criterion validity was investigated in groups of patients in accordance with their cognitive status. As expected, verbal communication abilities deteriorate faster than the relationship aspects of communication as the disease progresses. CONCLUSIONS: In summary, CODEMamb is a reliable and valid instrument that can be used to collect important information with the ultimate aim of supporting communication with people with dementia.

Support for families of patients dying with dementia: a qualitative analysis of bereaved family members' experiences and suggestions.

OBJECTIVE: To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them. METHOD: We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods. RESULTS: Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process. SIGNIFICANCE OF RESULTS: Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.