Sensitivity of C-Reactive Protein and Procalcitonin Measured by Point-of-Care Tests to Diagnose Urinary Tract Infections in Nursing Home Residents: A Cross-Sectional Study.

BACKGROUND: Diagnosing urinary tract infections (UTIs) in nursing home residents is complex, as specific urinary symptoms are often absent and asymptomatic bacteriuria (ASB) is prevalent. The aim of this study was to assess the sensitivity of blood C-reactive protein (CRP) and procalcitonin (PCT), measured by point-of-care tests (PoCTs), to diagnose UTIs in this setting. METHODS: Elderly residents (≥65 years old) with a suspected UTI were recruited from psychogeriatric, somatic, or rehabilitation wards across 13 participating nursing homes. CRP and PCT were tested simultaneously in the same study participants. To assess the tests' sensitivities, a stringent definition of "true" UTI was used that included the presence of symptoms, urinary leucocytes, a positive urine culture, and symptom resolution during antibiotic treatment covering isolated uropathogen(s). The original sample size was 440 suspected UTI episodes, in order to detect a clinically relevant sensitivity of at least 65% when calculated using the matched analysis approach to compare both PoCTs. RESULTS: After enrollment of 302 episodes (68.6% of the planned sample size), an unplanned and funder-mandated interim analysis was done, resulting in premature discontinuation of the study for futility. For 247 of 266 eligible episodes, all mandatory items required for the true UTI definition (92.9%) were available. In total, 49 episodes fulfilled our stringent UTI definition (19.8%). The sensitivities of CRP (cut-off, 6.5 mg/L) and PCT (cut-off, 0.025 ng/mL) were 52.3% (95% confidence interval [CI], 36.7-67.5%) and 37.0% (95% CI, 23.2-52.5%), respectively. CONCLUSIONS: Our results indicate that CRP and PCT are not suitable tests for distinguishing UTI and ASB in nursing home residents. CLINICAL TRIALS REGISTRATION: Netherlands Trial Registry NL6293.

[COVID-19 in nursing homes A study of diagnosis, symptomatology and disease course]. / Covid-19 in verpleeghuizen.

OBJECTIVE: To describe the diagnosis, symptomatology and disease course of COVID-19 in nursing home (NH) residents in the Netherlands. DESIGN: Prospective cohort study. METHOD: Data on NH residents with suspected COVID-19 were collected from the electronic patient records. Data were collected on diagnostic status (COVID-19: confirmed/excluded (using the RT-PCR test)), symptomatology (typical/atypical and other symptoms, body temperature and oxygen saturation) and, in the case of confirmed COVID-19, on disease course (recovered/clinically improved/deteriorated, deceased). We described and compared the symptomatology in NH residents with confirmed COVID-19 and NH residents in whom COVID-19 had been excluded. We also analysed mortality risk using survival analysis. We used registrations from the period 18 March to15 April 2020 for this study. RESULTS: We reported on 1,969 NH residents with suspected COVID-19. The diagnosis was confirmed in 857 patients (43.5%); diagnosis was excluded in 1,112 (56.5%) patients. Among patients with confirmed COVID-19, 65% had coughs, 70% had fever, 33% had shortness of breath, 28% had delirium/confusion and 10% had a sore throat; in patients in whom COVID-19 was excluded these symptoms were experienced in 70%, 47%, 45%, 26% and 13% of patients, respectively. Of the patients with confirmed COVID-19, 48% died within 30 days (95% CI: 36-44%), versus 20% of the patients in whom COVID-19 was excluded (95% CI: 11-15%). CONCLUSION: There is a lot of overlap in symptomatology between NH residents with COVID-19 and those with other acute diseases. An RT-PCR test is required to be able to make the distinction better. The mortality risk in patients with confirmed COVID-19 is significantly higher than in patients in whom covid-19 is excluded.

The Application of the Concept of Resilience in Aging Research and Older Adult Care: A Focus Group Study.

Introduction: Research incorporating resilience, a concept featuring a positive outcome despite some type of stressor, has the potential to identify possibilities for promotion of the well-being of older people. This study aims to gain insight into the value and potential applications of resilience in both research and care practice from the perspective of researchers and care professionals. Specifically, the value of two scientific approaches, the a priori (i.e., based on a priori definition of a stressor and outcome) and dynamical systems approaches (i.e., based on mathematically modeled patterns in the real-time response to perturbations), was explored. Methods: Focus groups were performed to explore the thoughts of academic researchers from different disciplines in the fields of aging and care and care professionals on the application of the concept of resilience, including the a priori and dynamical systems approaches. Analysis of these focus groups was based on the framework method. Results: Five focus groups were held with a total of nine researchers from different disciplines (e.g., epidemiology, sociology) and 15 older adult care professionals from different professions (e.g., elderly care physician, physiotherapist). The participants described resilience as a concept with value for both aging research and care through its positive connotation and comprehensiveness. Continued research was thought to play an important role in clearing up some of the existing ambiguity surrounding resilience. The importance of resilience in the context of both high- and low-intensity stressors was underscored. The a priori and dynamical systems approaches were considered to have their specific advantages and disadvantages on both conceptual and feasibility levels. Therefore, the use of both approaches, side by side and in combination, was suggested. Conclusion: This qualitative exploration among researchers and care professionals confirms that the concept of resilience, including the a priori and dynamical systems approaches, is valuable. However, more work is necessary before can be delivered on the potential of resilience in aging research and older adult care practice. Greater conceptual and operational clarity can be achieved through more qualitative studies on the concept that take the perspective of older people into account and through empirical studies that work with both approaches simultaneously and/or in combination.

Resilience in older persons: A systematic review of the conceptual literature.

Although ageing research increasingly incorporates resilience, a common notion on what resilience means is lacking. We aimed to give a comprehensive overview of the conceptual literature on resilience in older persons, identifying areas of consensus and variation/debate. A systematic search of eight databases from different disciplines led to the inclusion of 36 texts. Across the conceptual literature of resilience in older persons, three common features of descriptions of resilience were identified: a stressor, a response and a mechanism. Based on differences in their interpretation of how resilience is expressed we distinguished two perspectives. The first, classical and most widely applied perspective, describes the expression of resilience as a positive response to a high intensity stressor. The second, newer perspective, describes resilience in the context of responses relative to equilibrium, following low intensity stressors. Almost all descriptions across the two perspectives describe the resilience mechanism to be dynamic and emphasize the importance of the context in achieving resilience. This review provides clarity on the current conceptual status of resilience in older persons, an important step towards a higher level of consistency in the future use of resilience in ageing.

Development of a Patient-Reported Outcomes Measurement Information System (PROMIS®) short form for measuring physical function in geriatric rehabilitation patients.

PURPOSE: To develop and test the validity of a Patient-Reported Outcomes Measurement Information System (PROMIS®) short form for measuring physical function of geriatric rehabilitation patients. METHODS: Experts selected items from the Dutch-Flemish PROMIS v1.2 Physical Function (PROMIS-PF) item bank and proposed new items to develop the PROMIS-PF short form for geriatric rehabilitation (PROMIS-PF-GR). Patients evaluated its content validity. Structural validity was assessed by evaluating unidimensionality (confirmatory, exploratory, and bi-factor analyses [criterion: Omega H > 0.80 and ECV > 0.60]), local independence (criterion: residual correlation < 0.20) ,and monotonicity (criterion: Hi-coefficient ≥ 0.30). Measurement invariance was assessed by evaluating Differential Item Functioning (DIF) between geriatric rehabilitation patients and people from the general population using ordinal logistic regression. Internal consistency was assessed by calculating Cronbach's alpha (criterion: alpha ≥ 0.70). RESULTS: Experts selected 24 items from the PROMIS-PF item bank and proposed one new item which was not included in the short form. Patients considered the 24 items relevant and containing essential information. The PROMIS-PF-GR's psychometric properties were evaluated in 207 patients (mean age ± SD, 80.0 ± 8.3 year; 58% female). The 24 items were found to be sufficiently unidimensional (Omega H = 0.82, ECV = 0.70), locally independent (98.7% item pairs), and monotone (all ≥ 0.32). Five items were flagged for DIF, but their impact on the total score was negligible. Cronbach's alpha was 0.94. CONCLUSION: The PROMIS-PF-GR was developed from the PROMIS-PF and has good content validity, structural validity, measurement invariance, and internal consistency in Dutch geriatric rehabilitation patients. We recommend to confirm the content validity of the PROMIS-PF-GR in other countries.

Urine cultures in a long-term care facility (LTCF): time for improvement.

BACKGROUND: Urinary tract infections (UTIs) are the most prevalent infections in long-term care facilities (LTCFs). Numerous studies have described the problem of inadequate UTI diagnosis and treatment. We assessed the role of urine cultures in the diagnosis and treatment of UTIs in a LTCF. METHODS: In a 370-bed non-academic LTCF a retrospective assessment of antibiotic (AB) prescriptions for UTIs and urine cultures was performed from July 2014 to January 2016. The reasons why physicians, including 11 nursing home physicians and 2 junior doctors, ordered urine cultures were recorded using questionnaires. RESULTS: During the study period, 378 residents were prescribed 1672 AB courses; 803 were for UTIs. One hundred and fifty-five urine cultures were obtained from 135 residents; 66 of these cultures were performed on the same day as ABs were prescribed (8% of all prescriptions for UTI), while 89 were not. There was a discrepancy between the actions that seemed logical based on the culture results and the actions that were actually taken in 75% of the cases. In these cases, initial AB treatment was not adjusted when the isolated microorganism was resistant to the AB prescribed, the urine culture was positive and no ABs had previously been administered, or ABs were prescribed and no microorganism was isolated. The most frequent reason for ordering a urine culture was to confirm the diagnosis of a UTI. CONCLUSION: In the majority of patients, AB therapy was not adjusted when the urine culture results suggested it may be appropriate. The physicians were erroneously convinced that UTIs could be diagnosed by a positive urine culture.

[Unexplained behaviour and dementia]. / Over onbegrepen gedrag en dementie.

Behavioural changes, often resulting in negative or challenging behaviour, are highly prevalent in patients with dementia. Here we describe two patients in whom challenging behaviour was the first sign of an evolving dementia process. We discuss the relevance of a multifactorial approach in analysis and treatment, starting from a biopsychosocial model of behaviour in dementia. One pitfall is underestimating the contribution of physical co-morbidity to challenging behaviour in these patients; a further pitfall is the 'attribution phenomenon', i.e. the tendency to attribute new behavioural symptoms to conditions that are already known, such as chronic psychiatric illness. Guidelines for the assessment and management of challenging behaviour in patients who have already been diagnosed with dementia are also useful in cases where the physician is confronted with unexplained behavioural changes and challenging behaviour in older adults who have not yet been diagnosed with this condition.

Disentangling the concept of "the complex older patient" in general practice: a qualitative study.

BACKGROUND: The rising life expectancy in the developed world leads to an increase in the number of older patients and the complexity of their complaints in general practice. Although interventions and support for general practitioners are available, implementation lags. Knowledge on what determines a complex older patient, the problems of which general practitioners encounter and the situations they actually need support for, is necessary for better implementation. METHODS: To provide support to general practitioners in their struggle with complex older patients, the aim of this research was to disentangle the concept of the complex older patient in general practice. A qualitative approach was used consisting of 15 semi-structured interviews with general practitioners. The general practitioner was asked to prepare a case of a complex older patient out of their own practice that could be discussed during the interview. Transcripts of the interview were analysed using inductive thematic analysis. RESULTS: Analysis of the interviews resulted in twelve themes that could be categorised into five factors that contribute to the complexity of cases of older patients. The five factors are: not being in charge, different views on necessary care, encountering the boundaries of medicine, limits to providing social care, ill-equipped. CONCLUSION: The factors that were found imply that a better organisational structure for elderly care and consulting elderly care physicians could support general practitioners in providing care for older complex patients. Furthermore, understanding the current concept of patient autonomy seems unjustified in cases of complex older patients.

The cost-effectiveness of grip on challenging behaviour: an economic evaluation of a care programme for managing challenging behaviour.

OBJECTIVE: The objective of the study was to evaluate the cost-effectiveness of implementing the Grip on Challenging Behaviour care programme (GRIP) on dementia special care units in comparison with usual care. METHODS: A stepped wedge design was used. Challenging behaviour and quality of life were measured using the Cohen Mansfield Agitation Inventory (CMAI) and the QUALIDEM. Quality-adjusted life years (QALYs) were calculated using the EuroQol-5D. Psychoactive medication use (range 0-5 per measurement) and sick leave were registered. Costs included medication, time spent on challenging behaviour and education. Costs and effects were analysed using linear multilevel regression. Incremental cost-effectiveness ratios were calculated. Statistical uncertainty was estimated using bootstrapping. RESULTS: Seventeen dementia special care units participated. GRIP led to improvement on the QUALIDEM subscale social relations (1.6; 95% CI 0.18 to 3.4) and on the use of psychoactive medication (-0.73; 95% CI -1.1 to -0.46) and to a decrease in QALYs (-0.02; 95% CI -0.06 to -0.003). No significant effects on CMAI, sick leave and other QUALIDEM subscales were found. The intervention was not cost-effective in comparison with usual care with regard to CMAI score, QALYs and sick leave. The willingness to pay should be 320€/point improvement on the QUALIDEM subscale social relations and 370€/psychoactive medication less to reach a 0.95 probability of cost-effectiveness. CONCLUSION: It depends on how much society is willing to pay whether GRIP can be considered cost-effective. Because the appropriateness of the current methods for analysing cost-effectiveness in this specific population is uncertain, the positive effects on behaviour, medication and job satisfactions should also be taken in account in the decision making.

Coming to grips with challenging behaviour: a cluster randomised controlled trial on the effects of a new care programme for challenging behaviour on burnout, job satisfaction and job demands of care staff on dementia special care units.

BACKGROUND: Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to diminishing the challenging behaviour of residents, improve job satisfaction and reduce the care staff's feelings of burnout. OBJECTIVES: To determine the effects of a care programme for the challenging behaviour of nursing home residents with dementia on the burnout, job satisfaction and job demands of care staff. DESIGN: The care programme was implemented according to a stepped wedge design in which care units were randomly divided over five groups with different time points of starting with implementation. SETTING: 17 Dutch dementia special care units. PARTICIPANTS: Care staff members of the 17 units. INTERVENTION: The care programme consists of an education package and of various structured assessment tools that guide professionals through the multidisciplinary detection, analysis, treatment and evaluation of treatment of challenging behaviour. METHODS: Burnout, job satisfaction and job demands were measured before implementation, halfway through the implementation process and after all the care units had implemented the care programme. Burnout was measured with the Dutch version of the Maslach burnout inventory (UBOS-C, three subscales); job satisfaction and job demands were measured with subscales of the Leiden Quality of Work Questionnaire. Mixed model analyses were used to determine effects. Care staff could not be blinded for the intervention. RESULTS: Of the 1441 questionnaires, 645 were returned (response 45%, 318 control measurements, 327 intervention measurements) by 380 unique care staff members. Significant effects were found on job satisfaction (0.93, 95% CI 0.48-1.38). On the other outcomes, no significant changes in the scores were found. CONCLUSION: Positive effects of using the Grip on Challenging behaviour care programme were found on job satisfaction, without an increase in job demands.

'To move or not to move': a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities.

BACKGROUND: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID). METHOD: A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs. RESULTS: The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making. CONCLUSIONS: Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care.

[Drawn towards a career in elderly care medicine, but not till after medical school. Elderly care medicine as a career choice]. / Gegrepen door de ouderengeneeskunde, maar niet tijdens de studie geneeskunde! Keuze voor de opleiding tot specialist ouderengeneeskunde.

In order to develop strategies for raising the interest of medical students in a career in elderly care medicine (a specialty in The Netherlands) we should start by gaining more insight into the process influencing career choices among medical students and graduates. In this qualitative study we conducted three focus group discussions with trainees in elderly care medicine and two focus group discussions with obstetrics and gynaecology trainees. We found that all trainees made their career choice after clinical exposure in the field. The elderly care medicine trainees did not make their choice until after graduation, working in temporary employment in a nursing home. The obstetrics and gynaecology trainees made their specialty choice during medical school after their clerkship. Almost all focus group participants had a very negative perception during medical school about geriatrics and elderly care medicine. Once they were employed in a nursing home they changed their minds. They came to realize the work was more interesting, more difficult, more intensive and more meaningful than they had initially thought.

Nurses in distress? An explorative study into the relation between distress and individual neuropsychiatric symptoms of people with dementia in nursing homes.

OBJECTIVES: To optimize care and interventions to improve care, and to reduce staff burden, it is important to have knowledge of the relation between individual neuropsychiatric symptoms and distress of care staff. We therefore explored the relation between frequency and severity of individual neuropsychiatric symptoms and distress of care staff. DESIGN: This is an explorative study with a cross-sectional design. PARTICIPANTS AND SETTING: Care staff was interviewed regarding 432 residents of 17 nursing homes for people with dementia. MEASUREMENTS: Behavioural problems were assessed using the Nursing Home version of the Neuropsychiatric Inventory (NPI-NH) questionnaire. The distress scale of the NPI-NH was used to determine the distress of care staff. RESULTS: Agitation/aggression had the highest mean distress score and was also the most prevalent symptom. Disinhibition and irritability/lability also had high mean distress scores, whereas euphoria/elation, hallucinations and apathy had the lowest mean distress score. The symptom severity of each symptom strongly predicted the distress score, whereas the frequency of the symptoms was a less important factor. CONCLUSIONS: Although some of these findings are in accordance with studies among informal caregivers, there are also notable differences. Apathy caused little distress among care staff. Therefore, care staff might not feel the urgency to explore the causes of this symptom. The findings of this study emphasize the importance of supporting care staff in the management of behavioural problems, especially aggression and apathy.

Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study.

BACKGROUND: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. METHOD: This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. RESULTS: Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas. CONCLUSIONS: If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work.

[A qualitative study of Falls Efficacy Scale-International/Hips. What do we measure?]. / Een kwalitatieve studie naar de Falls Efficacy Scale-International/Hips. Is meten weten?

OBJECTIVE: Pilot-testing a new instrument: the Falls Efficacy Scale-International/Hips (FES-I/Hips). This instrument is intended to measure 'Fear of Falling' (FoF). To the current instrument, the Falls Efficacy Scale-International, are four questions added for patients who are rehabilitating in a nursing home. It is pretested and used in the HIPS-study. METHODS: Qualitative exploratory study with interviews in a Three Step Test Interview (TSTI) protocol. Respondents (N = 12) were asked to think aloud while completing the questionnaire. RESULTS: The instruction how to complete the questionnaire is well understood by patients but was not properly used by them. The questionnaire contains questions with difficult words and questions which are no longer relevant. There are six "two-in-one questions" that cause confusion. CONCLUSION: Use of the standard instruction when completing the FES-I/Hips can lead to underreporting of FoF. Adaptation of certain items may improve content validity. Further psychometric studies are recommended to determine whether the proposed adjustments are appropriate.

Quality of life of nursing-home residents with dementia subject to surveillance technology versus physical restraints: an explorative study.

OBJECTIVE: As physical restraints should only be used in exceptional cases, there is an urgent need for alternatives to restraint use. Surveillance technology could be such an alternative. This study explored whether nursing-home residents with dementia subjected to surveillance technology had better quality of life scores for mood, behavioral and societal dimensions than residents with physical restraints. METHODS: Quality of life was assessed longitudinally, with three measurements in six psychogeriatric nursing homes of residents with surveillance technology (n = 170) and residents with physical restraints (n = 22). QUALIDEM subscales were used to measure five dimensions of quality of life. Multilevel longitudinal univariate and multivariate regression techniques were used to analyze the data. RESULTS: Because physical restraints were almost exclusively used in residents with low activities of daily living (ADL) independency (18 of the 22), we restricted the regression analyses to residents with a Barthel Index score ≤ 5 (overall n = 53). Univariate results showed that highly ADL-dependent residents with surveillance technology had significantly more positive affect than highly ADL-dependent residents with physical restraints. However, this difference proved to be no longer significant after adjustment for the confounders: age, sex and stage of dementia. CONCLUSIONS: Quality of life of highly ADL-dependent nursing-home residents with dementia seems to be unrelated to the use of surveillance technology as opposed to physical restraints.

[Evaluation of a family booklet on comfort care in dementia by professional and family caregivers]. / Een handreiking voor familieleden over palliatieve zorg bij dementie: evaluatie door zorgverleners en familieleden.

Families of nursing home residents with dementia are usually involved in care and treatment decisions. To this end, family needs to be informed on the course of the dementia and possible palliative care. Based on a Canadian booklet, we developed an adapted version for use in the Netherlands. Elderly care physicians (n = 30), nurses (n = 38), and bereaved families (n = 59) evaluated the booklet and possible implementation strategies. All respondents confirmed that in general, there is a need of an information brochure on comfort care and end-of-life issues for families. Most (93%) families believed they would have found the booklet useful when received earlier. Compared to the physicians, nurses more frequently found the booklet useful to most or all families (p = 0.04). Acceptance, as measured on an 8-item scale, was highest among families and lowest among physicians. Overall usefulness was often perceived as high (means 7.9 to 8.3; scale range 0-10; SD 0.9 to 1.4) and did not differ across groups of respondents (p = 0.29). All respondents agreed that professional caregivers should have a role in providing the booklet. Additionally, half (53%; no difference across groups) favoured availability of the booklet through families' own initiative; some already before admission. In conclusion, there is a high need for written information on palliative care. The booklet is highly appreciated. A further improved version may support professional and family caregivers in practice.

[The lived-experiences of early-stage dementia and the feared suffering: an explorative survey]. / De beleving van beginnende dementie en het gevreesde lijden.

This qualitative explorative survey aimed at investigating the personal experiences of elderly people with early-stage dementia with regard to their illness and the extent to which they experience their situation as 'suffering'. In the Netherlands insight in this suffering is relevant with regard to ongoing debate on euthanasia and physician assisted death in early dementia. Participants in the study were 24 elderly (mean age 76.3 years) diagnosed with early-stage Alzheimer's disease. The semi-structured interviews were transcribed verbatim, and qualitatively analyzed. The elderly were found to be very capable of sharing experiences about their disease. They indicated not to experience their situation 'as a whole' as one of dreadful suffering. The gradual progression, which is distinctive of Alzheimer's disease, also allows people to adapt and adjust to their changing situation. As a result, the actual experiences of the disease can, in a positive manner, deviate from their anticipatory beliefs. The experiences of the participants appeared less negative than the ideas 'healthy' elderly often have about a life with dementia. The results from this study emphasize the importance of listening to the voices of people with dementia. Communication with elderly with Alzheimer's disease, is in the early stages quite possible and essential for advance care planning to be adjusted to their actual wishes and needs.

The role of advance euthanasia directives as an aid to communication and shared decision-making in dementia.

Recent evaluation of the practice of euthanasia and related medical decisions at the end of life in the Netherlands has shown a slight decrease in the frequency of physician-assisted death since the enactment of the Euthanasia Law in 2002. This paper focuses on the absence of euthanasia cases concerning patients with dementia and a written advance euthanasia directive, despite the fact that the only real innovation of the Euthanasia Law consisted precisely in allowing physicians to act upon such directives. The author discusses two principal reasons for this absence. One relates to the uncertainty about whether patients with advanced dementia truly experience the suffering they formerly feared. There is reason to assume that they don't, as a consequence of psychological adaptation and progressive unawareness (anosognosia). The second, more fundamental reason touches upon the ethical relevance of shared understanding and reciprocity. The author argues that, next to autonomy and mercifulness, "reciprocity" is a condition sine qua non for euthanasia. The absence thereof in advanced dementia renders euthanasia morally inconceivable, even if there are signs of suffering and notwithstanding the presence of an advance euthanasia directive. This does not mean, however, that advance euthanasia directives of patients with dementia are worthless. They might very well have a role in the earlier stages of certain subtypes of the disease. To illustrate this point the author presents a case in which the advance directive helped to create a window of opportunity for reciprocity and shared decision-making.

[Development of a charter for older people in clinical trials: PREDICT]. / PREDICT: ontwikkeling van een 'handvest' voor ouderenparticipatie in klinisch geneesmiddelenonderzoek.

Recent national guidelines on dementia and stroke demonstrate an unmistakable age gap: although both conditions are very prevalent in older people, the evidence supporting these guidelines is mainly drawn from research performed in younger patients. These examples are illustrative of a wider problem. When it comes to drug trials the underrepresentation of elderly people in clinical studies can have devastating effects. Under- and overtreatment as well as 'off label' prescription are common in this age group and they are overrepresented when it comes to negative treatment outcomes and adverse effects. Awareness of the pervasiveness of these problems is growing and there are several initiatives to improve medication safety in elderly patients. However, most of these focus on medication that is already certified, leaving the principle cause of the problem, namely the exclusion of the elderly from clinical trials, untouched. This issue is now being tackled by a European research consortium called PREDICT (Increasing the PaRticipation of the ElDerly In Clinical Trials). Using a multi-method approach this project assesses the participation of older people in recent and ongoing trials, surveys their views on facilitators and barriers to participation, as well as those of health professionals and ethicists and aims to use these findings to draft a charter for the rights of elderly people in clinical trials.