The course of neuropsychiatric symptoms and psychotropic drug use in Dutch nursing home patients with dementia during the first wave of COVID-19: A longitudinal cohort study.

OBJECTIVE: To describe the course of neuropsychiatric symptoms in nursing home residents with dementia during the step-by-step lifting of restrictions after the first wave of the COVID-19 pandemic in the Netherlands, and to describe psychotropic drug use (PDU) throughout the whole first wave. METHODS: Longitudinal cohort study of nursing home residents with dementia. We measured neuropsychiatric symptoms using the Neuropsychiatric Inventory-Questionnaire (NPI-Q). From May to August 2020, the NPI-Q was filled in monthly. Psychotropic drug use was retrieved from the electronic prescription system, retrospectively for the months February to April and prospectively for the months May to August. RESULTS: We followed 252 residents with dementia in 19 Dutch nursing homes. Agitation was the most prevalent type of neuropsychiatric symptom at each assessment. Overall, the prevalence and severity of agitation and depression significantly decreased over time. When considering more in detail, we observed that in some residents specific neuropsychiatric symptoms resolved (resolution) while in others specific neuropsychiatric symptoms developed (incidence) during the study period. For the majority of the residents, neuropsychiatric symptoms persisted over time. Psychotropic drug use remained stable over time throughout the whole first wave of the pandemic. CONCLUSIONS: At group level, lifting the measures appeared to have beneficial effects on the prevalence and severity of agitation and depression in residents with dementia. Nevertheless, on an individual level we observed high heterogeneity in the course of neuropsychiatric symptoms over time. Despite the pressure of the pandemic and the restrictions in social contact imposed, PDU remained stable.

[Case managers' perceptions on their role in (future) euthanasia requests in patients with dementia]. / Casemanagers over hun rol bij (toekomstige) euthanasiewensen van mensen met dementie.

To anticipate future suffering due to dementia a growing number of people draft written advance euthanasia directives (AED). In actual practice the number of cases of euthanasia in advanced dementia is very limited. Dementia case managers are often closely involved since an early stage of the disease in the support and guidance of people with dementia and are well positioned to talk about the AED. This study aims to acquire insights into the way case managers deal with AEDs of people suffering from dementia. This qualitative study consists of two focus groups of ten case managers in total. Involvement of case managers was found to extend beyond discussing merely AEDs, to also the broader discussion of euthanasia and 'future euthanasia wishes' of patients with dementia. A thematic analysis of how case managers proceed with future euthanasia wishes yielded five themes: 1) Scenarios in practice; 2) Introduction of a written euthanasia directive as a conversation topic; 3) Guidance and support of the client and caregiver; 4) Cooperation with other health care workers; 5) Experienced dilemmas. The insights, provided by this study, into the role of case managers regarding the guidance of people with dementia and a future euthanasia wish contributes to a further optimization of the multidisciplinary collaboration between general practitioners and dementia case managers. Further research into the added value of this collaboration in dealing with these complicated issues around euthanasia in dementia care, is recommended.

Pneumonia, Intake Problems, and Survival Among Nursing Home Residents With Variable Stages of Dementia in the Netherlands: Results From a Prospective Observational Study.

OBJECTIVES: We explored how pneumonia and intake problems affect survival in nursing home residents in variable stages of dementia. METHODS: In a longitudinal observational study (372 residents) with up to 3.5 years of follow-up, we examined relationships between dementia severity, the development of pneumonia, intake problems, and mortality using joint modeling, Cox models, and mediation analyses. Dementia severity was measured semiannually with the Bedford Alzheimer Nursing Severity-Scale (BANS-S). RESULTS: The median BANS-S score at baseline was 13 (range, 7 to 28). Pneumonia occurred in 103 (28%) and intake problems in 126 (34%) of 367 residents with complete registration of pneumonia and intake problems. Compared with dementia severity, incident pneumonia and, even more so, incident intake problems were more strongly associated with mortality risk. Pneumonia and intake problems both mediated the relationship between more severe dementia and mortality. DISCUSSION: Developing pneumonia and intake problems affects survival, and this is not limited to advanced dementia. The occurrence of pneumonia and intake problems are important signals to consider a palliative care approach in nursing home residents with dementia, and an active focus on advance care planning is needed. Future studies should investigate whether this is also relevant for patients in primary care.

End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands.

OBJECTIVE: The objective was to describe end-of-life treatment decisions for patients dying with dementia in various stages of dementia in long-term care facilities in the Netherlands with elderly care physicians responsible for treatment and care. METHODS: We present data collected in the nationally representative Dutch End of Life in Dementia study (2007-2011). Within 2 weeks after death, 103 physicians completed questionnaires about the last phase of life in 330 residents with dementia who resided in 1 of 34 participating long-term care facilities. We used descriptive statistics. RESULTS: Advance directives were rare (4.9%). A minority was hospitalized (8.0%) in the last month (mainly for fractures) or received antibiotics (24.2%) in the last week (mainly for pneumonia). Four residents received tube feeding or rehydration therapy in the last week. In almost half of the residents (42.3%), decisions were made not to start potentially life-prolonging treatment such as hospital transfer and artificial nutrition and hydration. In more than half of the residents (53.7%), decisions were made to withdraw potentially life-prolonging treatment such as artificial nutrition and hydration and medication. Antibiotics were more frequently prescribed for residents with less advanced dementia, but otherwise there were no differences in treatment decisions between residents with advanced and less advanced dementia. CONCLUSIONS: Physicians often withhold potentially burdensome life-prolonging treatment in nursing home residents in all stages of dementia in the Netherlands. This suggests that the physicians feel that a palliative care approach is appropriate at the end of life in dementia in long-term care. Copyright © 2016 John Wiley & Sons, Ltd. StartCopTextCopyright © 2016 John Wiley & Sons, Ltd.

The Recovery After COVID-19 in Nursing Home Residents.

Introduction: Many nursing homes (NHs) are affected by COVID-19 and 30-day mortality is high. Knowledge on recovery of NH residents after COVID-19 is limited. Therefore, we investigated the trajectory in the first three months after a COVID-19 infection in NH residents. Methods: Retrospective observational cohort study of Dutch NH residents with COVID-19 between 1 September 2020 and 1 March 2021. Prevalence of COVID-19 symptoms and functioning was determined using interRAI (ADL-Hierarchy Scale (ADL-HS), Cognitive Performance Scale (CPS) and Revised Index of Social Engagement (RISE)) at four time points. Descriptive and pattern analyses were performed. Results: Eighty-six residents were included. Symptom prevalences after three months were higher than at baseline. At group level, functioning on all domains deteriorated and was followed by recovery towards baseline, except for ADL functioning. There were four trajectories; 9.3% had no deterioration. Total and partial recovery occurred in respectively 30.2% and 55.8% of the residents. In 4.7% there was no recovery. Conclusion: In 86% of NH residents surviving three months after COVID-19, occurrence of COVID-19 symptoms and deterioration in functioning was followed by recovery. COVID-19 symptoms fatigue and sleeping behaviour were significantly more prevalent, and ADL functioning was significantly lower, at three months compared to baseline.

Quality Indicators of Primary Care Provider Engagement in Nursing Home Care.

The initiative described here aims to identify quality indicators (QIs) germane to the international practice of primary care providers (PCP) in post-acute and long-term care in order to demonstrate the added value of medical providers in nursing homes (NHs). A 7-member international team identified and adapted existing QIs to the AMDA competencies for medical providers. QI sources included the ACOVE 3 Quality Indicators (2007), NH Quality Indicators (2004), NH Residential Care Quality Indicators (2002), and AGS Choosing Wisely (2014). We recruited a technical expert panel (TEP) consisting of 11 panelists from the US, Canada, and the European Union, selected for their knowledge and leadership in post-acute and long-term care. The TEP, using a RAND Modified Delphi approach, provided pre-meeting ratings, discussed items in-person for clarification, and re-rated items following discussion. When panelists rated more than 1 option for a particular QI as valid and feasible, the most stringent option was selected for inclusion in the final candidate set of QIs. Panelists confidentially rated an initial 103 items on validity and feasibility of implementation. During the meeting, panelists added 18 QIs and modified 18. In post-meeting analysis, we eliminated 7 QIs rated not valid and 9 QIs for which a more stringent QI was rated valid and feasible. This resulted in a final set of 97 QIs rated valid and feasible and 8 rated valid but not feasible. This set of QIs for PCPs in the NH identified practices in which provider engagement adds value through expertise in geriatric syndromes, employing evidence-based practice, advocating for residents, delivering person-centered care, facilitating advance care planning, and communicating effectively to coordinate care. Next steps include pilot testing and evaluating the association between adherence to QIs, PCP staffing models, and better outcomes.

Changes in Care Goals and Treatment Orders Around the Occurrence of Health Problems and Hospital Transfers in Dementia: A Prospective Study.

OBJECTIVES: To explore changes in care goals and treatment orders around the occurrence of pneumonia and intake problems, and whether hospitalization is in line with earlier agreed-upon do-not-hospitalize orders. DESIGN: Data were collected as part of the Dutch End of Life in Dementia study (2007-2011), a longitudinal observational study with up to 3.5 years of follow-up. SETTING: Long-term care facilities (N = 28) in the Netherlands. PARTICIPANTS: Newly admitted nursing home patients (N = 372) in various stages of dementia. MEASUREMENTS: Semiannually, physicians completed questionnaires about care goals and treatment orders, and they continuously registered episodes of pneumonia, intake problems and hospitalization. We report on changes in care goals and treatment orders during follow-up in relation to the developing of pneumonia and intake problems and on hospitalization and reasons for hospitalization. RESULTS: The proportion of patients with palliative care goals and do-not-treat orders rose during follow-up, especially before death. Treatment orders most frequently referred to resuscitation and hospitalization (do-not order increased from 73% to 92%, and from 28% to 76%, respectively). The proportions of patients with a palliative care goal and do-not-treat orders were similar after developing pneumonia, but increased after intake problems. During follow-up, 46 patients were hospitalized one or more times. Hospitalization occurred despite a do-not-hospitalize order in 21% of decisions. The most frequently reported reason for hospitalization was a fracture, especially in patients with a do-not-hospitalize order. CONCLUSION: Care plans, including global care goals (predominantly palliative care goals), are made soon after admission, and specific treatment orders are agreed upon in more detail when the condition of the patient worsens. Establishing care plans shortly after nursing home admission may help to prevent burdensome treatment.

From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia.

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.

Antibiotic use and associated factors in patients with dementia: a systematic review.

BACKGROUND: Infections frequently occur in patients with dementia and antibiotics are often prescribed, but may also be withheld. OBJECTIVES: The aim of this systematic review is to provide a systematic overview of the prevalence of antibiotic use, and factors associated with prescribing antibiotics in patients with dementia. DATA SOURCES: A systematic search of MEDLINE, EMBASE, PSYCINFO, CINAHL, and the Cochrane library databases until February 13, 2014 was performed, using both controlled terms and free-text terms. RESULTS: Thirty-seven articles were included. The point prevalence of antibiotic use in patients with dementia ranged from 3.3 to 16.6%. The period prevalence ranged from 4.4 to 88% overall, and from 23.5 to 94% in variable time frames before death; the median use was 52% (median period 14 days) and 48% (median period 22 days), respectively. Most patients with lower respiratory tract infections or urinary tract infections (77-91%) received antibiotic treatment. Factors associated with antibiotic use related to patients, families, physicians, and the healthcare context. More severe dementia and a poor prognosis were associated with less antibiotic use in various countries. Associations with aspiration and illness severity differed by country. CONCLUSIONS AND IMPLICATIONS: Antibiotic use in patients with dementia is substantial, and probably highly associated with the particular healthcare context. Future studies may report antibiotic use by infection type and stage of dementia, and compare cross-nationally.

Dying with dementia: symptoms, treatment, and quality of life in the last week of life.

CONTEXT: Burdensome symptoms present frequently in dementia at the end of life, but we know little about the symptom control provided, such as type and dosage of medication. OBJECTIVES: To investigate symptom prevalence and prescribed treatment, explore associations with quality of life (QOL) in the last week of life, and examine symptom prevalence by cause of death of nursing home residents with dementia. METHODS: Within two weeks after death, physicians completed questionnaires about symptoms and treatment in the last week for 330 nursing home residents with dementia in the Dutch End of Life in Dementia study (2007-2011). We used linear regression to assess associations with QOL, measured by the Quality of Life in Late-Stage Dementia scale. Causes of death were abstracted from death certificates. RESULTS: Pain was the most common symptom (52%), followed by agitation (35%) and shortness of breath (35%). Pain and shortness of breath were mostly treated with opioids and agitation mainly with anxiolytics. At the day of death, 77% received opioids, with a median of 90 mg/24 hours (oral equivalents), and 21% received palliative sedation. Pain and agitation were associated with a lower QOL. Death from respiratory infection was associated with the largest symptom burden. CONCLUSION: Symptoms are common in dementia at the end of life, despite the large majority of residents receiving opioids. Dosages may be suboptimal with regard to weighing of effects and side effects. Future research may employ observation on a day-to-day basis to better assess effectiveness of symptom control and possible side effects.

The Bedford Alzheimer nursing-severity scale to assess dementia severity in advanced dementia: a nonparametric item response analysis and a study of its psychometric characteristics.

The Bedford Alzheimer Nursing-Severity Scale (BANS-S) assesses disease severity in patients with advanced Alzheimer's disease. Since Alzheimer is a progressive disease, studying the hierarchy of the items in the scale can be useful to evaluate the progression of the disease. Data from 164 Alzheimer's patients and 186 patients with other dementia were analyzed using the Mokken Scaling Methodology to determine whether respondents can be ordered in the trait dementia severity, and to study whether an ordering between the items exist. The scalability of the scale was evaluated by the H coefficient. Results showed that the BANS-S is a reliable and medium scale (0.4≤H<0.5) for the Alzheimer group. All items with the exception of the item about mobility could be ordered. When later item was eliminated from the scale, the H coefficient decreased indicating that the scalability of the scale in the original form is more accurate than in the shorter version. For the other dementia group, the BANS-S did not fit any of the Mokken Scaling models because the scale was not unidimensional. In this group, a shorter version of the scale without the sleeping cycle item and the mobility item has better reliability and scalability properties than the original scale.