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Purpose: The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks., Method: An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data., Results: Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment., Conclusions: People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools. Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.

ABSTRACTBackground:Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks., Methods: A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes., Results: The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network., Conclusion: The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.

Objective: To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories., Design: A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction., Setting: Community settings and nursing homes in the Netherlands., Participants: 19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers)., Results: The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare., Conclusion: Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged-managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

Objective: This study describes the process elements of decision-making for dementia, in order to enrich a model to facilitate shared decision-making for professionals working with people with dementia and their informal caregivers., Methods: We performed a qualitative study based on secondary analysis of 117 interviews from 23 care networks consisting of people with dementia, their informal caregivers and professionals. Findings were compared to an existing model of collaborative deliberation., Results: We made an enhancement to the existing collaborative deliberation model, to include: (1) constructive network engagement, (2) recognizing the need for a decision, (3) defining what to decide on, (4) developing alternatives, (5) constructing preferences through deliberation and trying out alternatives, (6) multiple preference integration, and (7) evaluating decision-making., Conclusion: In describing the process elements of decision-making in dementia, this empirical study proposes a modification of the model of collaborative deliberation for the context of dementia care. The adaptation highlights the special attention needed to recognize and define what to decide on, try out alternatives, and handle conflicting interests and preferences., Practice Implications: Professionals should be attentive to mark the start of the decision-making process and work with participants towards a shared view on the pressing matters at hand., (Copyright © 2017 Elsevier B.V. All rights reserved.)

Objective: Pain is a frequent long-term consequence of stroke, but its relation to emotional and social well-being is poorly studied in stroke populations. We aimed to identify the prevalence of substantial pain among institutionalized stroke patients and to explore its relation to emotional distress (ED) and low social engagement (SE)., Methods: In a cross-sectional design, we collected data of 274 chronic stroke patients in Dutch nursing homes. Observation lists were filled out in structured interviews with qualified nurse assistants who knew the residents well. Pain and SE were measured with the Resident Assessment Instrument for Long-term Care Facilities, and ED was measured with the Neuropsychiatric Inventory Questionnaire (NPIQ)., Results: Substantial pain was present in 28% of the residents, mostly located in the affected body side (68%). Multilevel regression analyses revealed that this pain was independently related to a 60% increase in NPIQ score (β 3.18 [1.84-4.53]) and to clinically relevant symptoms of delusions (odds ratio [OR] 8.45 [1.82-39.05]), agitation/aggression (OR 3.82 [1.76-8.29]), depression (OR 3.49 [1.75-6.98]), and anxiety (OR 2.32 [1.08-4.97]). Substantial pain was associated with low SE when adjusted for clinical covariates (OR 4.25 [1.72-10.53]), but only in residents with no/mild or severe cognitive impairment. This relation disappeared when additionally corrected for NPIQ score (OR 1.95 [0.71-5.39])., Conclusions: Pain is a serious and multidimensional problem among institutionalized stroke patients. It is related to increased ED, which in turn can be a pathway to low SE as an indicator of social vulnerability. Future research should reveal how pain management in nursing homes can be tailored to the needs of this patient group., (Copyright © 2014 John Wiley & Sons, Ltd.)

Background: An interactive web tool has been developed for facilitating shared decision-making in dementia-care networks. The DecideGuide provides a chat function for easier communication between network members, a deciding together function for step-by-step decision-making, and an individual opinion function for eight dementia-related life domains. The aim of this study was to gain insight in the user friendliness of the DecideGuide, user acceptance and satisfaction, and participants' opinion of the DecideGuide for making decisions., Materials and Methods: A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the DecideGuide. Structured interviews took place at the start, middle, and end of the field study with people with dementia, informal caregivers, and case managers. Four observations of case managers' home visits focused on members' responses and use of the tool., Results: (1) The user friendliness of the chat and individual opinion functions was adequate for case managers and most informal caregivers. Older participants, with or without dementia, had some difficulties using a tablet and the DecideGuide. The deciding together function does not yet provide adequate instructions for all. The user interface needs simplification. (2) User acceptance and satisfaction: everybody liked the chat's easy communication, handling difficult issues for discussion, and the option of individual opinions. (3) The DecideGuide helped participants structure their thoughts. They felt more involved and shared more information about daily issues than they had done previously., Conclusion: Participants found the DecideGuide valuable in decision-making. The chat function seems powerful in helping members engage with one another constructively. Such engagement is a prerequisite for making shared decisions. Regardless of participants' use of the tool, they saw the DecideGuide's added value.

Objectives: Apathy is a frequent neuropsychiatric consequence of stroke. In the under-researched population of institutionalized stroke patients, we aimed to explore the prevalence of apathy, its clinical correlates, and the relation to the amount of stimulating activities in the nursing home (NH)., Design: A cross-sectional, observational study., Setting: Dutch NHs., Participants: 274 chronic stroke patients., Measurements: Data were collected through observation lists that were filled out in structured interviews with qualified nurse assistants who knew the residents well. The lists comprised the NH-version of the Apathy Evaluation Scale (AES10), the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. Attending physicians and therapists provided additional information., Results: Apathy (AES10 score ≥30) was present in 28% of residents. Multilevel regression analyses revealed that this apathy was independently related to (moderate, severe) cognitive impairment (odds ratio [OR] 11.30 [95% confidence interval (CI): 4.96-25.74], OR 5.54 [95% CI: 2.48-12.40]), very severe ADL-dependency (OR 12.10 [95% CI: 1.35-108.66]), and being >12 hours per day in bed (OR 2.10 [95% CI: 1.07-4.13]). It was not related to depressive mood symptoms (OR 1.75 [95% CI: 0.91-3.37]). Only in residents aged less than 80 years were a higher amount of activities independently related to a lower AES10 score (-0.70 [95% CI: -1.18 to -0.20] points per four extra activities in a 4-week period)., Conclusions: Apathy is prevalent in largely one-quarter of institutionalized stroke patients, and that is most strongly related to cognitive impairment in this explorative study. We discuss the need for research on the relation with distinct dimensions of depression and fatigue as partly overlapping constructs, and on (individualized) stimulating activities as a possible intervention method., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Background: The Grip on Challenging Behavior care program for managing challenging behavior was implemented in the dementia special care units of 17 Dutch nursing homes. A process evaluation of the implementation of the care program was performed to determine the quality of the implementation and the lessons to be learned for future implementation., Methods: The care program was implemented according to a stepped wedge design. First-order data (data on recruitment, reach, relevance and feasibility) were used to determine the validity of the study, and second-order data (intervention quality and the barriers and facilitators for implementing the care program) were used to describe the implementation process. Two structured questionnaires were administered to care staff and key stakeholders and semi-structured interviews were held in the units., Results: University affiliated and non-affiliated nursing homes from different parts of the Netherlands participated. The resident participation rate was over 95% and the participation rate for the training sessions was 82%. Respondents considered the care program relevant and feasible. The degree of implementation was not optimal. The barriers and facilitators in implementing the care program could be divided into three categories: organizational aspects, culture on the unit and aspects of the care program itself., Conclusions: The recruitment, reach, relevance and feasibility are sufficient to allow for analysis and generalization of the effects of the care program, but the degree of implementation should be taken into account in further analysis. Future projects that involve implementation should consider the specific features of the organization and the cultural orientation of the unit to better adapt to specific needs., Trial Registration: The Netherlands National Trial register under number NTR2141 registered on 11 December 2009. Randomization took place in November 2010, and the first intervention group started using the intervention in February 2011.

Objectives: The Grip on Challenging Behavior care program was developed using the current guidelines and models on managing challenging behavior in dementia in nursing homes. It was hypothesized that the use of the care program would lead to a decrease in challenging behavior and in the prescription of psychoactive drugs without increase in use of restraints., Design: A randomized controlled trial was undertaken using a stepped-wedge design to implement the care program and to evaluate the effects. An assessment of challenging behavior and psychoactive medication was undertaken every 4 months on all participating units followed by the introduction of the care program in a group of 3 to 4 units. A total of 6 time assessments took place over 20 months., Setting: Seventeen dementia special care units of different nursing homes., Participants: A total of 659 residents of dementia special care units. All residents with dementia on the unit were included. Units were assigned by random allocation software to 1 of 5 groups with different starting points for the implementation of the care program., Intervention: A care program consisting of various assessment procedures and tools, which ensure a multidisciplinary approach and which structure the process of managing challenging behavior in dementia., Measurements: Challenging behavior was measured using the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory. Research assistants (blinded for intervention status of the unit) interviewed nurses on the units about challenging behavior. Data on psychoactive drugs and restraints were retrieved from resident charts., Results: A total of 2292 assessments took place involving 659 residents (1126 control measurements, 1166 intervention measurements). The group of residents who remained in the intervention condition compared with the group in the control condition differed significantly in the CMAI change scores between successive assessments [-2.4 CMAI points, 95% confidence interval (CI) -4.3 to -0.6]. No significant effects were found for the control-to-intervention group compared with the group who remained in the control group (0.0 CMAI points, 95% CI -2.3 to 2.4). Significant effects were found on 5 of the 12 Neuropsychiatric Inventory items and on the use of antipsychotics (odds ratio 0.54, 95% CI 0.37- 0.80) and antidepressants (odds ratio 0.65, 95% CI 0.44-0.94). No effect on use of restraints was observed., Conclusions: The Grip on Challenging behavior program was able to diminish some forms of challenging behavior and the use of psychoactive drugs., (Copyright © 2014 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Current guidelines and theories on the origin of challenging behaviour in dementia indicate that a structured multidisciplinary approach to its management is necessary. In the Grip on Challenging Behaviour study, a care programme was developed to improve the management of challenging behaviour., Method: In developing the care programme, the overlapping parts of dementia care guidelines were supplemented with discipline-specific parts. Three meetings with experts were arranged to further develop the structure of the care programme and to ensure a good fit with practice., Results: The care programme consists of four steps: detection, analysis, treatment, and evaluation. For each step, forms were developed to guide and structure the process and assign responsibilities for each discipline. As well as a description of the development and the content of the care programme, this paper presents two case studies in which the programme was used., Conclusion: The Grip on Challenging Behaviour care programme provides a way for dementia special care units to manage challenging behaviour in a structured way and with a multidisciplinary approach making use of their own resources.

Purpose: To identify factors in the early post-stroke period that have a predictive value for a poor outcome, defined as institutionalization or severe disability., Methods: MEDLINE, PSYCINFO, EMBASE and CINAHL were systematically searched for observational cohort studies in which adult and/or elderly stroke patients were assessed ≤ 1 month post-stroke and poor outcome was determined after a follow-up of ≥ 3 months., Results: Thirty three articles were selected from 4063 records, describing 27 independent cohort studies. There are rather consistent findings that greater age, a more severe stroke (measured through a clinical evaluation scale), the presence of urinary incontinence (with impaired awareness) and a larger stroke volume (measured through brain imaging techniques) predict poor stroke outcome. In contrast to clinical expectations, the prognostic value of ADL-dependency and impaired cognition remains unclear, and factors in the domains of emotional and communicative functioning rarely feature. Studies using a selected group of stroke patients tended to identify different predictors., Conclusions: The current evidence is insufficient for the development of a clinical prediction tool that is better than physicians' informal predictions. Future research should focus on the selection of optimal screening instruments in multiple domains of functioning, including the timing of assessment. We suggest developing prediction tools stratified by more homogeneous, clinically distinguished stroke subtypes., Implications for Rehabilitation: A reliable prognosis soon after a stroke is highly relevant to patients who ultimately have a poor outcome, because it enables early planning of care tailored to their needs. In view of the development of a clinical prediction tool that is better than physicians' informal predictions, future research should focus on optimal screening instruments in multiple domains of functioning, including emotional and communicative functioning. Clinical prediction tools stratified by more homogeneous, clinically distinguished stroke subtypes, could enable more accurate prognosis in individual stroke patients.

Background: Involving people with dementia in research is not self-evident. Inclusion of people with dementia in the development process of user-friendly, supportive IT applications may be especially useful to improve the quality of these applications and may be beneficial to the person with dementia. The aim of this study was to gain insight into the involvement of people with dementia in developing supportive IT applications. The focus of involvement was on phase, methods, role and impact on the quality of the IT application and on the person with dementia., Method: A systematic search was undertaken using Cochrane Library, PubMED, PsycInfo, EMBASE, and CINAHL. Publications were selected using the following inclusion criteria: publications had to address a development process of an IT application involving people with dementia. The BMJ checklist was used to assess the quality of the included publications., Results: Twenty-six publications relating to 15 IT programs met the inclusion criteria. People with dementia were mainly involved in the exploratory and technical development phases. The methods most frequently used to involve the participants were interviews, observations and usability try-outs. In most studies, participants were objects of study and informants. People with dementia provided useful feedback and gave valuable recommendations for researchers and designers regarding the development of user-friendly, supportive, IT applications. Involvement in all phases may have empowering effects on people with dementia., Conclusion: To develop valuable, user-friendly, supportive IT applications that increase the quality of life of people with dementia involvement in all phases of the development process is of great importance., (Copyright © 2013 Elsevier B.V. All rights reserved.)

Objectives: In view of the development of an integrated care and treatment program for institutionalized stroke patients tailored to their needs, we aimed to explore their status of functioning in the physical, cognitive, emotional, communicative and social domains. In addition, we explored the relation between status of functioning and stroke characteristics., Design: A cross-sectional, observational study., Setting: Dutch nursing homes (NHs)., Participants: Residents with stroke as main diagnosis for NH-admission, who experienced a stroke ≥3 months ago and stayed ≥1 month in a long term care ward., Measurements: Attending physicians provided information about stroke subtype, stroke location and time post-stroke. Status of functioning was measured through an observation list comprising the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. The list was filled out in a structured interview with a qualified nurse assistant who knew the resident well., Results: We included 274 residents (mean age 76.6, 58.4% female). The stroke that caused NH-dependency was in 81.3% ischemic, and in 49.8% right-sided. Median time post-stroke was 47 months; 90.9% of the residents were severely dependent in basic activities of daily living and 58% were in pain. Nearly half of the residents showed moderate (24.4%) or severe (23%) cognitive impairment. Irritability (52.9%), depressive symptoms (52.6%) and apathy (34.3%) occurred as the most frequent neuropsychiatric symptoms; 27.7% had a poor ability to express themselves and 30.3% had a low social engagement. We found more severe cognitive impairment, agitation/aggression and poor expression in left-sided strokes, more nighttime behavioral disturbances and delusions in right-sided strokes, and lower social engagement in residents with the largest time-interval post-stroke., Conclusion: This study among institutionalized stroke patients in Dutch NHs revealed very high prevalence of impairments on all domains of functioning, above the well-known severe disabilities in basic activities of daily living. The monitoring and management of both pain and neuropsychiatric symptoms should be key elements in an integrated care and treatment program., (Copyright © 2012 American Medical Directors Association. Published by Elsevier Inc. All rights reserved.)

Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs)., Method: Informal caregivers of GLH (N = 37) and NH residents (N = 49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence., Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months., Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers' psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers' distress relatively low over the long term. More knowledge is needed on whether and how caregivers' psychological distress after institutionalization of the care recipient can be reduced to a greater extent.

Objectives: To gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes., Design: Survey of elderly care physicians and additional qualitative interviews with a selection of elderly care physicians and relatives of people with dementia who had an advance directive for euthanasia., Setting: Dutch nursing home practice., Participants: Four hundred thirty-four elderly care physicians completed the general part of the questionnaire; 110 physicians provided case histories. Interviews were conducted with 11 physicians and eight relatives., Measurements: The questionnaire contained general questions about the incidence of advance directives for euthanasia in people with dementia. A second part involved questions about the most recent case of a person with dementia and an advance directive for euthanasia who had died. The interviews with elderly care physicians and relatives focused on further exploration of the decision-making process regarding adherence to the advance directive for euthanasia., Results: Despite law-based possibilities, advance directives for euthanasia of people with dementia were rarely adhered to, although they seem to have a supportive role in setting limitations on life-sustaining treatments. Elderly care physicians and relatives were found to be reluctant to adhere to advance directives for euthanasia. Not being able to engage in meaningful communication played a crucial role in this reluctance., Conclusion: Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited. Communication with the patient is essential for elderly care physicians to consider adherence to an advance directive for euthanasia of a person with dementia., (© 2011, Copyright the Authors. Journal compilation © 2011, The American Geriatrics Society.)

Background: As our society is ageing, nursing homes are finding it increasingly difficult to deal with an expanding population of patients with dementia and a decreasing workforce. A potential answer to this problem might lie in the use of technology. However, the use and application of surveillance technology in dementia care has led to considerable ethical debate among healthcare professionals and ethicists, with no clear consensus to date., Aim: To explore how surveillance technology is viewed by care professionals and ethicists working in the field, by investigating the ideal application of surveillance technology in the residential care of people with dementia., Methods: Use was made of the concept mapping method, a computer-assisted procedure consisting of five steps: brainstorming, prioritizing, clustering, processing by the computer and analysis. Various participants (ranging from ethicists to physicians and nurses) were invited on the basis of their professional background., Results: The views generated are grouped into six categories ranging from the need for a right balance between freedom and security, to be beneficial and tailored to the resident, and clearly defined procedures to competent and caring personnel, active monitoring and clear normative guidance. The results are presented in the form of a graphic chart., Conclusions: There appears to be an inherent duality in the views on using surveillance technology which is rooted in the moral conflict between safety and freedom. Elaboration of this ethical issue has proved to be very difficult.

Background: Behavioural problems are common in nursing home residents with dementia and they often are burdensome for both residents and nursing staff. In this study, the effectiveness and cost-effectiveness of a new care programme for managing behavioural problems will be evaluated., Methods/design: The care programme is based on Dutch national guidelines. It will consist of four steps: detection, analysis, treatment and evaluation. A stepped wedge design will be used. A total of 14 dementia special care units will implement the care programme. The primary outcome is behavioural problems. Secondary outcomes will include quality of life, prescription rate of antipsychotics, use of physical restraints and workload and job satisfaction of nursing staff. The effect of the care programme will be estimated using multilevel linear regression analysis. An economic evaluation from a societal perspective will also be carried out., Discussion: The care programme is expected to be cost-effective and effective in decreasing behavioural problems, workload of nursing staff and in increasing quality of life of residents., Trial Registration: The Netherlands National Trial Register (NTR)., Trial Number: NTR 2141.

Objective: To obtain insight into current practices regarding compliance with advance directives for euthanasia (ADEs) in cases of incompetent patients with dementia in Dutch nursing homes, in light of the legal possibility offered by the new euthanasia law to perform euthanasia in these cases., Methods: A written questionnaire was completed by 434 elderly care physicians (ECPs)., Findings: Over the years 2005-2006, many ECPs took care of patients with dementia and an ADE, actual life termination of these patients took place very rarely and never in incompetent patients. ECPs reported practical difficulties in determining the 'unbearableness' of the suffering and choosing the right moment of carrying out the ADE., Conclusions: Although the enactment of the Dutch euthanasia law in theory provided a window of opportunity for euthanasia in incompetent patients with dementia and an ADE, it has not led to obvious changes in compliance with ADEs of this patient group in practice. Crucial in the reticent attitudes of ECPs appears to be the impossibility of patient-physician communication. This raises questions on the feasibility of the law on this point. In our opinion, the role of ADEs in end-of-life care of patients with advanced dementia in the Netherlands deserves serious reconsideration., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Background: Technology has emerged as a potential solution to alleviate some of the pressures on an already overburdened care system, thereby meeting the growing needs of an expanding population of seriously cognitively impaired people. However, questions arise as to what extent technologies are already being used in residential care and how ethically and practically acceptable this use would be., Methods: A systematic literature review was conducted to explore what is known on the moral and practical acceptability of surveillance technologies in residential care for people with dementia or intellectual disabilities, and to set forth the state of the debate., Results: A total of 79 papers met the inclusion criteria. The findings show that application and use of surveillance technologies in residential care for vulnerable people generates considerable ethical debate. This ethical debate centers not so much around the effects of technology, but rather around the moral acceptability of those effects, especially when a conflict arises between the interests of the institution and the interests of the resident. However, the majority of articles lack in depth analysis. Furthermore, there are notable cultural differences between the European literature and American literature whereby in Britain there seems to be more ethical debate than in America. Overall however, there is little attention for the resident perspective., Conclusion: No ethical consensus has yet been reached, underlining the need for clear(er) policies. More research is thus recommended to determine ethical and practical viability of surveillance technologies whereby research should be specifically focused on the resident perspective.

Background: Although advance directives may seem useful instruments in decision-making regarding incompetent patients, their validity in cases of dementia has been a much debated subject and little is known about their effectiveness in practice. This paper assesses the contribution of advance directives to decision-making in the care of people with dementia, with a special focus on non-treatment directives and directives for euthanasia., Methods: The relevant problems from the ethical debate on advance directives in cases of dementia are summarized and we discuss how these relate to what is known from empirical research on the validity and effectiveness of advance directives in the clinical practice of dementia care., Results: The ethical debate focuses essentially on how to respond to the current wishes of a patient with dementia if these contradict the patient's wishes contained in an advance directive. The (very limited) empirical data show that the main factors in medical decision-making in such cases is not the patient's perspective but the medical judgment of the physician and the influence of relatives. Insight into the experiences and wishes of people with dementia regarding advance directives is totally lacking in empirical research., Conclusions: Ethics and actual practice are two "different worlds" when it comes to approaching advance directives in cases of dementia. It is clear, however, that the use of advance directives in practice remains problematic, above all in cases of advance euthanasia directives, but to a lesser extent also when non-treatment directives are involved. Although generally considered valid, their effectiveness seems marginal. Further empirical research into the (potential) value of advance directives in dementia care is recommended.

Context: Alzheimer disease (AD) is a complex disorder with a strong heritable component. Amyloid pathology, vascular factors, and inflammation are postulated to be involved in its pathogenesis, but causality has not been established unequivocally., Objective: To identify heritable traits in middle age that contribute to AD., Design: We used a proven family design, comparing middle-aged offspring with and without a parental history of AD. In such a design, the offspring under study are enriched for risk factors of AD but do not yet have the disease., Setting: The Netherlands., Participants: Two hundred six offspring of 92 families with a parental history of late-onset AD and 200 offspring of 97 families without a parental history of AD., Main Outcome Measures: The APOE epsilon4 genotype, vascular factors, production capacity of pro- and anti-inflammatory cytokines upon stimulation with lipopolysaccharide, and circulating markers of inflammation. All outcome measures were assessed in the offspring only and not in the parental generation., Results: More offspring with a parental history of AD carried APOE epsilon4 than those without a parental history of the disease (47% vs 21%, P < .001). Those with a parental history of AD also had higher systolic blood pressures (P = .006), higher diastolic blood pressures (P < .001), and lower ankle brachial indices (P = .005) when compared with offspring without a family history of dementia. Production capacity of pro-inflammatory cytokines in offspring with a parental history of AD was also different, with higher levels of IL-1beta (interleukin 1beta) (P < .001), IL-1beta to IL-1ra ratio (P < .001), tumor necrosis factor alpha (P = .008), IL-6 (P = .04), and interferon gamma (P = .01). All of these positive associations were independent of APOE epsilon4 genotype., Conclusions: Hypertension and the expression of an innate pro-inflammatory cytokine profile in middle age are early risk factors of AD in old age. For the offspring of affected families, it provides clues for screening and preventive strategies, of which blood pressure control can be implemented directly.

Objectives: The aim of this study was to investigate the effects of group living homes on quality of life and functioning of people with dementia., Methods: The study had a quasi-experimental design with a baseline measurement on admission and an effect measurement six months later. Participants were 67 residents in 19 group living homes and 97 residents in seven traditional nursing homes. DQOL and QUALIDEM measured quality of life, functional status was examined with MMSE, IDDD, RMBPC, NPI-Q and RISE from RAI. Use of psychotropic drugs and physical restraints was also assessed. Linear and logistic regression analyses analyzed the data., Results: After adjustment for differences in baseline characteristics, residents of group living homes needed less help with ADL and were more socially engaged. There were no differences in behavioral problems or cognitive status. Also after adjusting, two of the 12 quality of life subscales differed between the groups. Residents of group living homes had more sense of aesthetics and had more to do. While there were no differences in prescription of psychotropic drugs, residents of group living homes had less physical restraints., Conclusions: Group living homes had some beneficial effects on its residents, but traditional nursing homes performed well as well. Possible study limitations included the baseline differences between the study groups and the use of different informants on T0 and T1. Future nursing home care may very well be a combination of the best group living care and traditional nursing home care have to offer.

Objectives: The aim of this study was to investigate the effects of group living care for people with dementia on the psychological distress of informal caregivers, compared with regular nursing home care., Method: This study had a quasi-experimental design with two measurements. 67 primary informal caregivers in 19 group living homes and 99 primary informal caregivers in seven regular nursing homes filled in a questionnaire upon admission (baseline measurement) of their relative and six months later (effect measurement). Linear and logistic regression analyses were performed on three outcomes of psychological distress - psychopathology, caregiving competence and caregiver burden., Results: There were no significant differences in caregiver competence and caregiver burden between informal caregivers of residents in group living homes and those in regular nursing homes, although there was a trend towards less psychopathology in group living homes after adjustment for confounding., Conclusion: Informal caregivers of residents in group living homes do not have less psychological distress than informal caregivers of residents in regular nursing homes. Although there was a trend towards less psychopathology in informal caregivers of group living homes, the amount of symptoms remained very high in both caregiver groups. This means that the psychological well-being of caregivers deserves the continuing attention of health care providers, also after admittance of their relative in a nursing home facility.

Background: Group living homes are a fast-growing form of nursing home care for older people with dementia. This study seeks to determine the differences in job characteristics of nursing staff in group living homes and their influence on well-being., Methods: We examined the Job Demand Control Support (JDCS) model in relation to 183 professional caregivers in group living homes and 197 professional caregivers in traditional nursing homes. Multilevel linear regression analysis was used to study the mediator effect of the three job characteristics of the JDCS-model (demands, control and social support) on job satisfaction and three components of burnout (emotional exhaustion, depersonalization and decreased personal accomplishment)., Results: Demands were lower in group living homes, while control and social support from co-workers were higher in this setting. Likewise, job satisfaction was higher and burnout was lower in group living homes. Analysis of the mediator effects showed that job satisfaction was fully mediated by all three psychosocial job characteristics, as was emotional exhaustion. Depersonalization was also fully mediated, but only by control and social support. Decreased personal accomplishment was partially mediated, again only by job characteristics, control and support., Conclusion: This study indicates that working in a group living home instead of a traditional nursing home has a beneficial effect on the well-being of nursing staff, largely because of a positive difference in psychosocial job characteristics.

The objectives of this study were to determine the ability of the 30-, 15- and 8-item versions of the GDS for screening and assessing change in severity of depression in nursing home patients. The GDS and the MADRS were administered to 350 elderly NH-patients by trained interviewers. The presence of major (MaD) or minor depression (MinD) was evaluated with the Schedules for Clinical Assessment in Neuropsychiatry. Receiver Operator Characteristic (ROC) curves of the GDS-versions were performed to measure the ability to screen on depression. The ability to measure change in severity of depression was measured by differences in mean GDS-scores and mean MADRS-scores between patients with MaD, MinD and no depression, and expressed in terms of effect sizes. It was found that in ROC-curves all three GDS-versions performed well. The MADRS showed larger effect sizes for the differences between MaD, MinD and no depression than the GDS-versions. The effect sizes of the three GDS versions were comparable. We conclude that all three versions of the GDS can be used for screening on depression among NH-patients. The MADRS is superior to the GDS for assessment of (changes in) severity of depression, but the GDS also appears to be an acceptable instrument for this purpose and is less time-consuming.

Background: Among the general public there is a deep fear of developing dementia, which has led to an increasing number of people "at risk" seeking ways (such as advance directives) to avoid undergoing progressive mental decline. The views of people with dementia are vital in obtaining a real answer to the question of how the disease affects people's lives and whether it actually involves the suffering that so many fear., Method: A review of the international literature is provided on what is known about living through dementia from the patient's perspective., Results: A total of 50 papers met the inclusion criteria. The findings of these reviewed papers give insight into the impact of dementia and the ways that those who have it deal with its effects by using different coping strategies. The literature on the perspective of the patient gives no solid support to the widespread assumption that dementia is necessarily a state of dreadful suffering. Although the impact of dementia and the experiences of loss resulting in multiple "negative" emotions cannot be denied, our findings also indicate that people do not undergo the disease passively and use both emotion-oriented and problem-oriented coping strategies to deal with its challenges. The experiences of living through dementia as told by the sufferers appear to yield a more subtle picture than the assumptions made by the general public., Conclusion: The overview provides a good starting point for improving the adjustment of care to the experience and wishes of people with dementia.

This article reviews the Dutch societal debate on euthanasia/assisted suicide in dementia cases, specifically Alzheimer's disease. It discusses the ethical and practical dilemmas created by euthanasia requests in advance directives and the related inconsistencies in the Dutch legal regulations regarding euthanasia/assisted suicide. After an initial focus on euthanasia in advanced dementia, the actual debate concentrates on making euthanasia/assisted suicide possible in the very early stages of dementia. A review of the few known cases of assisted suicide of people with so-called early dementia raises the question why requests for euthanasia/assisted suicide from patients in the early stage of (late onset) Alzheimer's disease are virtually non-existent. In response to this question two explanations are offered. It is concluded that, in addition to a moral discussion on the limits of anticipatory choices, there is an urgent need to develop research into the patient's perspective with regard to medical treatment and care-giving in dementia, including end-of-life care.

Background: Pain is highly prevalent in nursing homes (NH) in several countries. Data about pain in Dutch NH's, where medical care is delivered by specifically trained NH-physicians, are not available. The aim of the present study is to determine prevalence, course, correlates, recognition and treatment of pain among Dutch NH-patients and to make a comparison with international data., Methods: The study-population consisted of 350 elderly NH-patients from 14 Dutch NH's. Pain (pain-subscale Nottingham Health Profile) and clinical characteristics (gender, age, cognition, depression, anxiety, sleeping problems, morbidity and functional status) were measured at baseline and at six months. Association of pain (baseline and six months) with clinical characteristics was assessed with chi-square and multiple logistic regression analyses., Results: Pain-prevalence was 68.0% (40.5% mild pain symptoms, 27.5% serious pain symptoms). 80% of the patients with pain at baseline still experienced pain at six months. Serious pain at baseline was significantly associated with depression (OR: 2.56; 95% CI: 1.34-4.89) and anxiety (OR 2.47; 95% CI: 1.22-4.99). Serious pain at six months was associated with pain at baseline (OR 18.55; 95% CI: 5.19-66.31) and depression at baseline (OR: 2.63; 95% CI:1.10-6.29). Recognition of pain by NH-physicians varied (35% to 69.7%) depending on measurement instrument and severity of pain. Analgesics were received by 64.5% (paracetamol (acetaminophen), NSAIDs, opioids). Paracetamol (acetaminophen) and opioids frequently were prescribed below daily defined doses., Conclusion: Pain occurred frequently also among Dutch NH-patients and was associated with depression and anxiety. Recognition and treatment by NH-physicians proved sub-optimal. Future studies should focus on interventions to improve recognition and treatment of pain.

Objectives: To assess incidence and outcome of depressive symptoms among nursing home (NH) patients and to identify clinical characteristics predicting onset and persistence of depressive symptoms., Methods: Depressive symptoms (GDS>10) and relevant correlates were assessed at baseline and at follow-up (6 months) in 350 NH-patients of 14 Dutch NH's with the Geriatric Depression Scale (GDS). Predictors of onset and persistence were studied using chi-square statistics and multiple logistic regression analyses., Results: The prevalence of depressive symptoms decreased from 41.3% to 28.9% during six months follow-up. The onset of depressive symptoms in those without depressive symptoms at baseline was 4.7%, while the rate of persistence was 63.3%. Persistence of depressive symptoms was more frequent in patients with higher GDS-scores (18-30) at baseline. No baseline characteristics were associated with onset of depressive symptoms. Persistence of depressive symptoms was only associated with more years of education., Conclusions: Pre-admission factors and transition may largely be responsible for depressive symptoms among nursing home patients. The observed substantial decrease in prevalence of depressive symptoms over six months is largely due to remission of depressive symptoms present at baseline. Adaptation of nursing home patients to pre-admission factors, facilitated by the nursing home environment, may explain this observed decrease of depressive symptoms. Future studies should evaluate interventions targeted at patients with higher GDS-scores (18-30).

Objective: To determine the impact of depression and anxiety on well being, disability and use of health care services among nursing patients., Methods: The study-population consisted of 350 elderly nursing home patients from 14 nursing homes in the Netherlands. Well being, disability, use of health care services (i.e. assistance in ADL, paramedical care, number of medications) and depression and anxiety and other relevant characteristics (gender, age, education, marital status, urbanization, cognition, morbidity, social support) were measured cross-sectionally. Associations of well being, disability and use of health care services with independent baseline characteristics were assessed with bivariate and with multivariate analyses., Results: Presence of depression and/or anxiety was associated with significantly less well being, but not with more disability. Presence of depression and/or anxiety was also significantly associated with four of the seven indicators of health care service use measured in this study: less assistance in ADL, more consultation of medical specialists, a higher mean number of medications and more use of antidepressants., Conclusion: Presence of depression and/or anxiety has a statistically and clinically significant negative impact on well being, but not on disability. Future studies should focus on interventions for improving the detection, diagnosis and treatment of depression and/or anxiety in the nursing home., (Copyright (c) 2006 John Wiley & Sons, Ltd.)

Objectives: To assess the occurrence and risk indicators of depression, anxiety, and comorbid anxiety and depression among nursing home patients and to determine whether depression and anxiety are best described in a dimensional or in a categorical classification system., Methods: DSM and subthreshold anxiety disorders, anxiety symptoms, major and minor depression and depressive symptoms were assessed in 333 nursing home patients of somatic wards of 14 nursing homes in the north west of the Netherlands with the Schedules for Clinical Assessment in Neuropsychiatry (SCAN) and the Geriatric Depression Scale (GDS). Comorbidity was studied along a severity gradient. Logistic regression analyses were carried out to identify demographic, health-related, psychosocial and care-related correlates of anxiety and depression., Results: The prevalence of pure depression (PD) was 17.1%, of pure anxiety (PA) 4.8%, and of comorbid anxiety and depression (CAD) 5.1%. Comorbidity increased dependent on severity of both anxiety and depression. Different patterns of risk indicators were demonstrated for PA, PD and CAD for the investigated baseline characteristics., Conclusions: Comorbidity of anxiety and depression is most prevalent in the more severe depressive and anxious nursing home patients. The gradual increase of comorbidity of anxiety and depression dependent on the levels of severity of depression and anxiety suggests that for nursing home patients a dimensional classification of depression and anxiety is more appropriate than a categorical one. The observed differences in patterns of risk indicators for PA, PD and CAD support a distinguishing of anxiety and depression. Future studies are needed to assess the effect of treatment of PA, PD and CAD in nursing home patients.

The validity of diagnostic psychiatric instruments for depression and anxiety disorders may be compromised among patients with complex physical illness and disability. The objective of this study was to determine the effect on the prevalence rate of depression and anxiety in a nursing home population of attributing somatic symptoms of depression and anxiety to either somatic or psychiatric disorder. Symptoms of major depression (MD), generalized anxiety disorder (GAD) and panic disorder (PD) were measured using the Schedules for Clinical Assessment in Neuropsychiatry (SCAN). Somatic symptoms of MD, GAD and PD were attributed to somatic causes when the interviewer was not sure about a psychiatric cause. To analyse the effect of this attribution on the prevalence rate of MD, GAD and PD, a sensitivity analysis was undertaken in which symptoms that were attributed to somatic causes were recoded as symptoms attributed to psychiatric disorder. Prevalence rates of MD, GAD and PD were calculated before and after recoding. The prevalence of MD after recoding rose from 7.5% to 8.1%. The prevalence of GAD did not change. The prevalence of PD rose from 1.5% to 1.8%. Attribution of somatic symptoms to either somatic or psychiatric disorder when the interviewer was not sure about a psychiatric cause of the somatic symptoms had only a very modest effect on the prevalence rate of major depression, generalized anxiety disorder and panic disorder in a nursing home population.

The purpose of this study was to investigate and analyze the moral tension that exists in the care for demented nursing home patients, between the principle of respect for autonomy and the value that is attached to respect for the subjective world of the patient. To this end an ethnographical field study was carried out by two researchers in two Dutch nursing homes. Among the central topics that evolved were the different moral problems that nurses experience concerning truth telling and acting truthfully in relation to demented patients. In situations unrelated to the dementia and its diagnosis, the right to be informed is in principle respected, even if the information is sometimes painful. More specific questions of demented patients about their situation are a regular cause of embarrassment for their carers, who rely on various treatment strategies to deal with such questions. These strategies are often successful. However, when they fail, the nurses are faced with a problem they cannot solve, namely the loss of a common shared world and the resulting unmentionable truth about the diagnosis of dementia, as objective basis and legitimization for their approach to the demented patient. We conclude that in the training and professional support given to nurses, more attention should be paid to (awareness of) the moral problems that arise from this loss of a common shared world, so that they can react to the subjective world of demented patients without feeling that they are deceiving them.

Ten years after its introduction the Special Admissions to Psychiatric Hospitals Act (Bopz) still awaits full implementation in the field of psychogeriatric nursing home care. Ethnographic research into moral problems related to care giving in dementia patients in Dutch nursing homes yielded several reasons for this discrepancy between law and care practice. Firstly, practical effectuation of this law rests predominantly on the shoulders of nurses and nurse assistants who are mainly inspired by moral motives such as carefulness and providing safety and who are ill informed about the law and its prerequisites. Secondly, there is the problem of the loss of a common shared world of meaning, which in relational terms is typical for the process of dementia. As a result of this, crucial concepts of the Bopz loose their applicability as the disease progresses. Finally, there is an immanent tension between the anthropology of care and care giving and the anthropological presuppositions of the law, health law included, which on a fundamental level contributes to the resistance of the care practice to the legal procedures of the Bopz. These factors must be accounted for in new legislation or revision of the current law. In the mean time we urge the necessity to develop a moral code concerning how to deal with resistive behaviour and opposition to care of demented nursing home patients.

Recently the advice of the Health Council of the Netherlands about dementia was published. It was asked for by the Dutch Minister of Healthcare. In this comment it is concluded, that the evidence-based description of the state of art on dementia points out serious undercapacity of formal care services and the need of considerable expansion of home care services as well as an increase of institutional capacity. This problem cannot be ignored by politicians any more.