A qualitative focus group study on legal experts' views regarding euthanasia requests based on an advance euthanasia directive.

BACKGROUND: The Dutch Euthanasia law permits euthanasia in patients with advanced dementia lacking decisional capacity based on advance euthanasia directives. Nevertheless, physicians encounter difficulties assessing the criteria for due care in such cases. This study explores the perspectives of legal experts on the fulfillment of these criteria and the potential for additional legal guidance to support physicians' decision-making processes. METHODS: A qualitative study was conducted with legal experts. Two focus group sessions were conducted. The data analysis was conducted iteratively, with the data being interpreted using thematic content analysis and the framework method. RESULTS: Participants emphasize the importance of considering the patient's current wishes and informing them about the limitations of advance euthanasia directives. While representatives and healthcare professionals can assist in interpreting wishes, the final decision regarding euthanasia rests with the physician. The participants also discuss the challenges posed by pre-recorded wishes due to changing preferences. Furthermore, they present different views on the value of life wishes of patients with advanced dementia. While some participants prioritize life wishes over advance euthanasia directives, others question whether such expressions still reflect their will. Participants find it essential to assess unbearable suffering in the context of the current situation. Participants acknowledge the necessity to interpret advance euthanasia directives but also current expressions and they entrust this interpretation to physicians, viewing them as the primary authority, despite consulting multiple sources. CONCLUSIONS: The Dutch Euthanasia law's due care criteria are open norms -which are open in substance and require further elaboration, mostly determined on a case-by-case basis to the field standards of the profession-, placing the responsibility on physicians to interpret advance euthanasia directives and patient expressions. Despite potential support from various sources of information, there is limited additional legal guidance available to assist physicians in making decisions.

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.

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.

Nurses' perspectives on whether medical aid in dying should be accessible to incompetent patients with dementia: findings from a survey conducted in Quebec, Canada.

We conducted a survey in a random sample of 514 Quebec nurses caring for the elderly to assess their attitudes towards extending medical aid in dying to incompetent patients and to explore associated factors. Attitudes were measured using clinical vignettes featuring a hypothetical patient with Alzheimer disease. Vignettes varied according to the stage of the disease (advanced or terminal) and the presence or absence of a written request. Of the 291 respondents, 83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%, p = 0.871) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity.

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.

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.

'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.

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.

[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.

Prevalence of healthcare-associated infections in Dutch long-term care facilities from 2009 to 2019.

OBJECTIVE: We assessed trends in the prevalence of healthcare-associated infections (HCAIs) and associated resident and facility characteristics in a national network of long-term care facilities (LTCFs) in the Netherlands from 2009 to 2019. METHODS: Participating LTCFs registered the prevalence of urinary tract infection (UTI), lower respiratory tract infection (LRTI), gastrointestinal infection (GI), bacterial conjunctivitis, sepsis and skin infection, using standardized definitions, in biannual point-prevalence surveys (PPSs). In addition, resident and LTCF characteristics were collected. Multi-level analyses were performed to study changes in the HCAI prevalence over time and to identify resident and LTCF-related risk factors. Analyses were performed for HCAIs overall and for UTI, LRTI and GI combined as these were recorded throughout the period. RESULTS: Overall, 1353 HCAIs were registered in 44,551 residents with a prevalence of 3.0% (95% confidence interval: 2.8-3.1; range between years 2.3-5.1%). When including only UTI, LRTI and GI the prevalence decreased from 5.0% in 2009 to 2.1% in 2019. Multi-variable regression analyses for UTI, LRTI and GI combined indicated that both prolonged participation and calendar time were independently associated with HCAI prevalence; in LTCFs that participated ≥4 years, the HCAI risk was decreased (OR 0.72 (0.57-0.92)) compared with the first year, and the OR per calendar year was 0.93 (0.88-0.97). CONCLUSIONS: Over 11 years of PPS in LTCFs the HCAI prevalence decreased over time. Prolonged participation further reduced the HCAI prevalence, in particular UTIs, despite the increasing age and associated frailty of the LTCF population, illustrating the potential value of surveillance.

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.

The place of surveillance technology in residential care for people with intellectual disabilities: is there an ideal model of application.

BACKGROUND: The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail. METHODS: Use was made of the concept mapping method as developed by Trochim; a computer-assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made. RESULTS: Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person-centred perspective with regard to people with dementia. CONCLUSIONS: When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self-evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST.

[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.

[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 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.

[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.