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Background: The COVID-19 pandemic has led to high mortality rates in nursing homes (NHs) in Europe. For adequate risk management and good prognostications, it is essential to identify mortality risk factors.Objective: This study aimed to determine whether previously identified risk factors for 30-day mortality in Dutch NH residents with COVID-19 are unique to COVID-19.Methods: In this cohort study, we included 1,294 NH residents with COVID-19 (cases) and 17,999 NH residents without COVID-19 (controls, from the pre-COVID-19 period). We used descriptive statistics and Cox proportional hazard models to compare mortality rates in residents with and without COVID-19, categorized by risk factors.Results: Cases had a more than 18 times higher hazard of death within 30 days compared to controls (HR 18, 95%CI: 16-20). For residents with COVID-19, being male, having dementia, and having Parkinson's disease (PD) were all associated with a higher 30-day mortality (HR 1.8 versus 1.3 versus 1.7). Being male was also associated with a higher mortality (HR 1.7) in the control group, whereas having dementia and PD were not. COVID-19 symptomatology was very similar for residents with and without dementia or PD, except for delirium and malaise which was more frequent in residents with dementia.Conclusion: Dementia and PD were significant additional risk factors for mortality in Dutch NH residents with COVID-19, whereas male gender was not unique to residents with COVID-19. The frailty of PD and dementia in NH residents with COVID-19 are relevant to consider in prognostication, communication, and care planning with residents and their families. [ABSTRACT FROM AUTHOR]

Objectives Caring for people with Korsakoff syndrome (KS) residing in specialized long-term care facilities (LTCFs) can be distressing because of challenging neuropsychiatric symptoms (NPS). However, good-quality studies on NPS in this under-researched population are lacking. This study examined the prevalence and severity of NPS in people with KS living in specialized LTCFs and the associated caregiver distress. Design Cross-sectional, observational study. Data were obtained using structured interviews with care staff, elderly care physicians, and residents. Setting Nine specialized LTCFs in the Netherlands. Participants KS residents admitted for at least 3 months. Measurements The prevalence and severity of NPS were measured with the Neuropsychiatric Inventory–Questionnaire (NPI-Q). The associated caregiver distress was assessed with the NPI Distress Scale (NPI-D) according to the nurse or nurse assistant. Results Almost all of the 281 residents (96.4%) showed at least 1 NPS and 45.8% showed 5 or more symptoms. Irritability/lability (68.3%), agitation/aggression (58.7%), and disinhibition (52.7%) were most prevalent. Although the mean level of severity for all NPS was relatively low, half of the residents (49.1%) had at least 1 severe NPS. Care staff experienced low levels of distress associated with NPS. Conclusion NPS are highly prevalent in KS residents. Unexpectedly, these did not have any severe impact on residents and care staff. Acquiring more insight into the persistence and course of NPS, and its associations, among KS residents is important to better understand and reduce these symptoms and, ultimately, improve the quality of care for these residents. [ABSTRACT FROM AUTHOR]

Background: Many people with dementia die in long-term care settings. These patients may benefit from a palliative care goal, focused on comfort. Admission may be a good time to revisit or develop care plans. Objective: To describe care goals in nursing home patients with dementia and factors associated with establishing a comfort care goal. Design: We used generalized estimating equation regression analyses for baseline analyses and multinomial logistic regression analyses for longitudinal analyses. Setting: Prospective data collection in 28 Dutch facilities, mostly nursing homes (2007-2010; Dutch End of Life in Dementia study, DEOLD). Results: Eight weeks after admission (baseline), 56.7% of 326 patients had a comfort care goal. At death, 89.5% had a comfort care goal. Adjusted for illness severity, patients with a baseline comfort care goal were more likely to have a religious affiliation, to be less competent to make decisions, and to have a short survival prediction. Their families were less likely to prefer life-prolongation and more likely to be satisfied with family-physician communication. Compared with patients with a comfort care goal established later during their stay, patients with a baseline comfort care goal also more frequently had a more highly educated family member. Conclusions: Initially, over half of the patients had a care goal focused on comfort, increasing to the large majority of the patients at death. Optimizing patient-family-physician communication upon admission may support the early establishing of a comfort care goal. Patient condition and family views play a role, and physicians should be aware that religious affiliation and education may also affect the (timing of) setting a comfort care goal. [ABSTRACT FROM AUTHOR]

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

• People with advanced Huntington's disease show heterogeneous phenotypes. • The majority of advanced disease patients use psychotropic drugs. • Neuropsychiatric signs vary despite end stage disease. In Huntington's disease (HD), admission to a nursing home (NH) is required in advanced disease stages. To gain insight in care needs, more knowledge is needed on the functioning of this group. Describing patient and disease characteristics, their functioning, and gender differences. A cross-sectional descriptive design was used to collect data of 173 patients living in eight Dutch HD-specialized NHs. Data were collected on characteristics and functioning. We tested for gender differences. Mean age was 58.3 years and 49.7% were men. Activities of daily living and cognition varied from 46 to 49% mildly impaired to 22–23% severely impaired. Communication was severely impaired in 24%. Social functioning was low in 31% and high in 34%. A majority of patients used psychotropic medications (80.3%) and showed neuropsychiatric signs (74%). Women were on average more dependent in ADL (severely impaired 33.3% vs 12.8%), more often depressed (26.4% vs 11.6%), and prescribed antidepressant medications more often (64.4% vs 48.8%) than men. The population of HD patients in NHs is heterogeneous in terms of patient and disease characteristics, and functioning. As a consequence, care needs are complex leading to implications for the required expertise of staff to provide adequate care and treatment. [ABSTRACT FROM AUTHOR]

Objectives To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death. Design Prospective observational study between January 2012 and May 2014. Setting Dutch nursing homes (32). Participants Nursing home patients with dementia and pneumonia (n = 193). Measurements Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days– to observe discomfort (Discomfort Scale–Dementia of Alzheimer Type; range 0–27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14–42), pain (Pain Assessment in Advanced Dementia; range 0–10), and dyspnea (Respiratory Distress Observation Scale; range 0–16). Results Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics. Conclusions Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective. [ABSTRACT FROM AUTHOR]

Objective The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses. Design A qualitative descriptive study. Methods A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes. Results Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios). Conclusions ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most acute decisions are covered in advance, but a responsive as well as a proactive style is seen with other treatment decisions. Further research is needed to increase understanding of whether and how the physicians' strategies affect care processes and outcomes. [ABSTRACT FROM AUTHOR]

Objectives Burdensome symptoms frequently develop as part of the dementia trajectory and influence quality of life. We explore the course of symptoms and their treatment during nursing home stay to help target adequate symptom management. Design Data were collected as part of the Dutch End of Life in Dementia study, a longitudinal observational study with up to 3.5 years of follow-up. Physicians performed assessments at baseline, semiannually, and shortly after death of pain, agitation, shortness of breath, and treatment provided for these symptoms. Setting Long-term care facilities (28) in the Netherlands. Participants Newly admitted nursing home residents (372) in variable stages of dementia. Measurements We described prevalence and course of symptoms, and treatment provided for these symptoms. We used generalized estimating equations to evaluate the longitudinal change in symptoms and their treatment, and the associations between the symptoms of pain and agitation, as well as between stage of dementia and symptoms. Results Pain was common (varying from 47% to 68% across the semiannual assessments) and frequently persistent (36%–41% of all residents); it increased to 78% in the last week of life. Agitation was the most common symptom (57%–71%), and also frequently persistent (39%–53%), yet it decreased to 35% in the last week of life. Shortness of breath was less common (16%–26%), but it increased to 52% at the end of life. Pain was not significantly associated with agitation. Advanced dementia was associated with more pain only. Treatment changed in particular at the end of life. Pain was treated mostly with acetaminophen (34%–52%), and at the end of life with parenteral opioids (44%). Agitation was mostly treated nonpharmacologically (78%–92%), and at the end of life anxiolytics were the most frequently prescribed treatment (62%). Overall, aerosolized bronchodilators were the most frequently prescribed treatment for shortness of breath (29%–67%), but at the end of life, this was morphine (69%). Conclusion Pain and agitation were common and frequently persisted in residents with dementia during nursing home stay, but symptom management intensified only at the end of life. Symptom control may be suboptimal from admission, and a stronger focus on symptom control is needed at an earlier stage than the end of life. [ABSTRACT FROM AUTHOR]

Objective To investigate the appropriateness of decisions to prescribe or withhold antibiotics for nursing home (NH) residents with infections of the urinary tract (UTI), respiratory tract (RTI), and skin (SI). Design Prospective study. Setting Ten NHs in the central-west region of the Netherlands. Participants Physicians providing medical care to NH residents. Measurements Physicians completed a registration form for any suspected infection over an 8-month period, including patient characteristics, signs and symptoms, and treatment decisions. An algorithm, developed by an expert panel and based on national and international guidelines, was used to evaluate treatment decisions for appropriateness of initiating or withholding antibiotics. Results Appropriateness of 598 treatment decisions was assessed. Overall, 76% were appropriate, with cases that were prescribed antibiotics judged less frequently “appropriate” (74%) compared with cases in which antibiotics were withheld (90%) ( P = .003). Decisions around UTI were least often appropriate (68%, compared with 87% for RTI and 94% for SI [ P < .001]). The most common situations in which antibiotic prescribing was considered inappropriate were those indicative of asymptomatic bacteriuria or viral RTI. Conclusion Although the rate of appropriate antibiotic prescribing in Dutch NHs is relatively high compared with previous studies in other countries, our results suggest that antibiotic consumption can be reduced by improving appropriateness of treatment decisions, especially for UTI. Given the current antibiotic resistance developments in long-term care facilities, interventions reducing antibiotic use for asymptomatic bacteriuria and viral RTI are warranted. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: The aim of this study was to explore if and how spiritual needs are assessed and if spiritual care is provided to Dutch nursing home residents, including residents suffering from dementia, and if and how caregivers communicate and collaborate regarding the residents' spiritual needs. Design: Two researchers conducted an ethnographic participatory study in a Dutch nursing home between April 2010 and June 2011, on a psychogeriatric unit (mostly dementia) and a somatic unit for residents suffering from physical disabilities. Inductive thematic analysis was used to identify patterns and trends and to interpret the data. Results: The physicians did not actively address spiritual issues, nor was it part of the official job of care staff. There was no communication between the physicians and the spiritual counselor. When a resident was about to die, the nurses started an informal care process aimed at (spiritual) well-being, including cuddling, rituals, and music. This was not mentioned in the care plan or the medical chart. The nurses even supported the residents outside their professional role in their spare time. Furthermore, we identified different occupational subcultures (eg, nurses and physicians), in which behavior of residents was given different meaning, depending on the frame of reference within the subculture. Conclusion: Spiritual issues were addressed only informally and were not part of the formal care process, either for residents suffering from dementia or for those with physical disabilities. Our results raise questions about how the lack of communication about spiritual end-of-life care between disciplines, and the informal and formal care processes affect spiritual well-being. [Copyright &y& Elsevier]

Abstract: Objectives: Despite serious safety concerns, prescription rates of antipsychotics for the treatment of the behavioral and psychological symptoms of dementia remain high, especially in nursing homes. This high prevalence of antipsychotic use cannot be explained by the modest success rate reported in the literature. In this study, we aim at clarifying the reasons for prescribing an antipsychotic drug in behavioral and psychological symptoms of dementia and look at the role of nurses and family caregivers in the decision-making process that precedes the prescription of an antipsychotic drug. Design: Questionnaire used in a one-on-one interview with elderly care physicians, nurses, and family caregivers. Setting: We conducted a survey in 23 nursing homes in the Netherlands. Method: On each dementia ward, the physician selected 1 or 2 patients who started antipsychotics most recently. An interviewer then held a structured questionnaire with the physician, the nurse, and the first relative of the patient. The first part of the interview consisted of questions about the general ideas of the physicians and the second part consisted of case-related questions to physicians, nurses, and family caregivers. Results: Physicians, nurses, and family caregivers generally consider the possible benefits of antipsychotics to outweigh the risk of side effects. The main reasons to start therapy are agitation and aggression. Physicians felt pressured by nurses to prescribe in 17% of cases. Physicians felt supported by the guideline of the Dutch Association of Elderly Care Physicians. The estimated average success rate in the discussed cases (the patient is expected to improve on the target behavior) among physicians was 50%, nurses reported 53%, and relatives 55%. The most frequently expected adverse reactions were increased fall risk, sedation, and parkinsonism. Nurses expected cognitive decline. The family felt insufficiently informed about the side effects in 44% of the cases. Conclusion: The interviewed nursing home physicians and nurses expect almost half of their patients with dementia and behavioral disturbances to benefit from antipsychotic therapy. Serious side effects were expected to occur only sporadically. These expectations may contribute to the high rate of antipsychotic use among these patients. [Copyright &y& Elsevier]

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

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