Pain among institutionalized stroke patients and its relation to emotional distress and social engagement.

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 (ß 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.

Apathy among institutionalized stroke patients: prevalence and clinical correlates.

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.

Grip on challenging behavior: process evaluation of the implementation of a care program.

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.

Coming to grips with challenging behavior: a cluster randomized controlled trial on the effects of a multidisciplinary care program for challenging behavior in dementia.

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.

The development of the Grip on Challenging Behaviour dementia care programme.

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.

What predicts a poor outcome in older stroke survivors? A systematic review of the literature.

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.

Institutionalized stroke patients: status of functioning of an under researched population.

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.

The long-term effect of group living homes versus regular nursing homes for people with dementia on psychological distress of informal caregivers.

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.

Advance directives for euthanasia in dementia: how do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives.

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.

The ideal application of surveillance technology in residential care for people with dementia.

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.

Grip on challenging behaviour: a multidisciplinary care programme for managing behavioural problems in nursing home residents with dementia. Study protocol.

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.

Advance directives for euthanasia in dementia: do law-based opportunities lead to more euthanasia?

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.

Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: an overview of the literature.

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.

Advance directives in dementia: issues of validity and effectiveness.

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.

The effects of group living homes on older people with dementia: a comparison with traditional nursing home care.

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.

Working in group living homes for older people with dementia: the effects on job satisfaction and burnout and the role of job characteristics.

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.

Screening for depression and assessing change in severity of depression. Is the Geriatric Depression Scale (30-, 15- and 8-item versions) useful for both purposes in nursing home patients?

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.

Suffering from dementia - the patient's perspective: a review of the literature.

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.

Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients 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.