Effects of the discontinuation of antihypertensive treatment on neuropsychiatric symptoms and quality of life in nursing home residents with dementia (DANTON): a multicentre, open-label, blinded-outcome, randomised controlled trial.

BACKGROUND: Based on observational studies and randomised controlled trials (RCTs), the benefit-harm balance of antihypertensive treatment in older adults with dementia is unclear. OBJECTIVE: To assess whether discontinuing antihypertensive treatment reduces neuropsychiatric symptoms (NPSs) and maintains quality of life (QoL) in nursing home residents with dementia. DESIGN: Open-label, blinded-outcome RCT. Randomisation 1:1, stratified by nursing home organisation and baseline NPS. Trial registration: NL7365. SUBJECTS: Dutch long-term care residents with moderate-to-severe dementia and systolic blood pressure (SBP) ≤160 mmHg during antihypertensive treatment. Exclusion criteria included heart failure NYHA-class-III/IV, recent cardiovascular events/procedures or life expectancy <4 months (planned sample size n = 492). MEASUREMENTS: Co-primary outcomes NPS (Neuropsychiatric Inventory-Nursing Home [NPI-NH]) and QoL (Qualidem) at 16 weeks. RESULTS: From 9 November 2018 to 4 May 2021, 205 participants (median age 85.8 [IQR 79.6-89.5] years; 79.5% female; median SBP 134 [IQR 123-146] mmHg) were randomised to either antihypertensive treatment discontinuation (n = 101) or usual care (n = 104). Safety concerns, combined with lacking benefits, prompted the data safety and monitoring board to advice a premature cessation of randomisation. At 16-week follow-up, no significant differences were found between groups for NPI-NH (adjusted mean difference 1.6 [95% CI -2.3 to 5.6]; P = 0.42) or Qualidem (adjusted mean difference - 2.5 [95% CI -6.0 to 1.0]; P = 0.15). Serious adverse events (SAEs) occurred in 36% (discontinuation) and 24% (usual care) of the participants (adjusted hazard ratio 1.65 [95% CI 0.98-2.79]). All 32-week outcomes favoured usual care. CONCLUSION: Halfway through this study, a non-significant increased SAE risk associated with discontinuing antihypertensive treatment was observed, and an associated interim analysis showed that significant worthwhile health gain for discontinuation of antihypertensive treatment was unlikely. This unbeneficial benefit-harm balance shows that discontinuation of antihypertensive treatment in this context does not appear to be either safe or beneficial enough to be recommended in older adults with dementia.

Mind-body practices for people living with dementia and their family carers: a systematic review.

INTRODUCTION: People with dementia and their family carers may benefit from non-pharmacological interventions, including mind-body (MB-) practices, which can improve physical and mental health by inducing relaxation. This systematic review provides an overview of availability and effects of MB-practices. CONTENT: The authors performed a systematic search in PubMed, Embase, Emcare, Web of Science, Cochrane Library, PsycINFO, China National Knowledge Infrastructure and Academic Search Premier on February 1, 2024. Research papers on MB-practices for people with dementia and/or their family carers in English, Chinese, Japanese, German, French and Dutch were included if a full text was available. Selection of included articles, data extraction and methodological quality assessments were conducted by two researchers. SUMMARY: Of the 130 included studies, 100 (77 %) were of high quality. Traditional Chinese Medicine (TCM) and touch interventions for people with dementia, and meditations for family carers resulted in improvements in respectively cognition and neuropsychiatric symptoms, and mental health. Lack of evidence for other MB-practices is related to small numbers of studies, fragmented use of outcome measures and mixed findings. OUTLOOK: MB-practices showed promising results. We recommend implementation and further research of TCM- and touch interventions for people with dementia as well as meditations for family carers. We suggest a cross-over of the promising results of one group to be studied in the other group.

Post-COVID-19 patients in geriatric rehabilitation substantially recover in daily functioning and quality of life.

BACKGROUND: After an acute infection, older persons may benefit from geriatric rehabilitation (GR). OBJECTIVES: This study describes the recovery trajectories of post-COVID-19 patients undergoing GR and explores whether frailty is associated with recovery. DESIGN: Multicentre prospective cohort study. SETTING: 59 GR facilities in 10 European countries. PARTICIPANTS: Post-COVID-19 patients admitted to GR between October 2020 and October 2021. METHODS: Patients' characteristics, daily functioning (Barthel index; BI), quality of life (QoL; EQ-5D-5L) and frailty (Clinical Frailty Scale; CFS) were collected at admission, discharge, 6 weeks and 6 months after discharge. We used linear mixed models to examine the trajectories of daily functioning and QoL. RESULTS: 723 participants were included with a mean age of 75 (SD: 9.91) years. Most participants were pre-frail to frail (median [interquartile range] CFS 6.0 [5.0-7.0]) at admission. After admission, the BI first steeply increased from 11.31 with 2.51 (SE 0.15, P < 0.001) points per month and stabilised around 17.0 (quadratic slope: -0.26, SE 0.02, P < 0.001). Similarly, EQ-5D-5L first steeply increased from 0.569 with 0.126 points per month (SE 0.008, P < 0.001) and stabilised around 0.8 (quadratic slope: -0.014, SE 0.001, P < 0.001). Functional recovery rates were independent of frailty level at admission. QoL was lower at admission for frailer participants, but increased faster, stabilising at almost equal QoL values for frail, pre-frail and fit patients. CONCLUSIONS: Post-COVID-19 patients admitted to GR showed substantial recovery in daily functioning and QoL. Frailty at GR admission was not associated with recovery and should not be a reason to exclude patients from GR.

Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement.

BACKGROUND: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. METHODS: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. RESULTS: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. CONCLUSIONS: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons' ownership of the research process. TRIAL REGISTRATION: Prospero 2021: CRD42021253736.

Noninvasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: a scoping review.

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted. Manuscripts were included if they were written in English, Dutch, German, French, Japanese or Chinese, if the monitoring technology measured discomfort or distressing symptoms, was noninvasive, could be continuously administered for 4 hours and was potentially applicable for bed-ridden people. The screening was performed by two researchers independently. Information about the technology, its clinimetrics (validity, reliability, sensitivity, specificity, responsiveness), acceptability, and feasibility were extracted. RESULTS: Of the 3,414 identified manuscripts, 229 met the eligibility criteria. A variety of monitoring technologies were identified, including actigraphy, brain activity monitoring, electrocardiography, electrodermal activity monitoring, surface electromyography, incontinence sensors, multimodal systems, and noncontact monitoring systems. The main indicators of discomfort monitored by these technologies were sleep, level of consciousness, risk of pressure ulcers, urinary incontinence, agitation, and pain. For the end-of-life phase, brain activity monitors could be helpful and acceptable to monitor the level of consciousness during palliative sedation. However, no manuscripts have reported on the clinimetrics, feasibility, and acceptability of the other technologies for the end-of-life phase. CONCLUSIONS: Noninvasive monitoring technologies are available to measure common symptoms at the end of life. Future research should evaluate the quality of evidence provided by existing studies and investigate the feasibility, acceptability, and usefulness of these technologies in the end-of-life setting. Guidelines for studies on healthcare technologies should be better implemented and further developed.

The effect of paracetamol on care dependency and daily functioning in persons with advanced dementia living in long-term care facilities.

BACKGROUND: Pain medication may have an impact on the quality of life (QoL) in persons with dementia, but may also influence care dependency and daily functioning. The aim of this study is to investigate the effect of regularly scheduled paracetamol on care dependency and daily functioning in persons with advanced dementia with low QoL living in long-term care facilities. METHODS: The Quality of life and Paracetamol In advanced Dementia (Q-PID) study was a (block) randomized double-blind placebo-controlled crossover trial with paracetamol and placebo across seventeen long-term care facilities across 9 care organizations in the western region of the Netherlands. Participants were ≥ 65 years, had advanced dementia (Global Deterioration Scale 5-7), and low QoL (QUALIDEM-6D score ≤ 70). Measurements were performed by nursing staff at the start and at the end of each treatment period of six weeks. Repeated linear mixed models were used to compute differences between randomization groups, with adjustment for period and order effects, and psychotropic use. RESULTS: Ninety-five persons (mean age of 83.9 years, 57.4% female) were enrolled in the Q-PID study. The mean Care Dependency Scale total score was 37.8 (Standard Deviation [SD] 12.9) and the mean Katz-15 total score was 11.9 (SD 2.4). Repeated linear mixed models showed no difference in mean differences of care dependency (paracetamol - 1.0 [95% Confidence Interval (CI) -2.4-0.3], placebo + 0.1 [-1.3-1.5]), and daily functioning (paracetamol + 0.2 [95% CI -0.2-0.6], placebo + 0.1 [-0.3-0.4]). CONCLUSIONS: Compared to placebo, no effect of scheduled administration of paracetamol was found on care dependency and daily functioning in persons with advanced dementia with low QoL. Future research should focus on which specific items of care dependency need special attention to improve the care for persons with advanced dementia. A multi-domain approach is needed to enhance and/or maintain QoL of persons with advanced dementia. TRIAL REGISTRATION: Netherlands Trial Register (NTR6766); http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6766 ; Trial registration date: 20/10/2017.

Factors influencing interprofessional collaboration in general and during multidisciplinary team meetings in long-term care and geriatric rehabilitation: a qualitative study.

BACKGROUND: Interprofessional collaboration is essential to maintain high-quality care in long-term care and geriatric rehabilitation. However, little is known regarding perceived factors influencing interprofessional collaboration by people involved in care. This concerns both long-term care and geriatric rehabilitation. Moreover, knowledge of using patient outcome measures to enhance interprofessional collaboration during multidisciplinary team meetings is insufficient. This study examined the perceived facilitators of and barriers to interprofessional collaboration in general and during multidisciplinary team meetings, specifically according to healthcare professionals, patients, and informal caregivers. Differences between long-term care and geriatric rehabilitation were also investigated. Finally, it was examined which patient outcome measures were used in multidisciplinary team meetings. METHODS: A constructivist qualitative study using 10 focus groups and 18 semi-structured interviews with 14 patients, 13 informal caregivers,10 managers, and 22 healthcare professionals from eight Dutch long-term care and geriatric rehabilitation facilities. A combined inductive and deductive approach to a thematic analysis was performed. RESULTS: The perceived influencing factors of interprofessional collaboration were classified into two general themes: (1) 'Involvement of patient, informal caregiver, and healthcare professional', categorised into: 'participation of patients and informal caregivers', 'behaviour and attitude of team members', 'expectations of team members towards each other', and 'exchange of information, knowledge, and reciprocity in communication'; and (2) 'A systematic approach to providing care for older people', consisting of: 'coordination of team procedures', and 'coordination of organisational procedures'. Also, one theme for multidisciplinary team meetings was identified: 'Organised participation of patient, informal caregiver, and healthcare professional in multidisciplinary team meeting, categorised into: 'team procedures', 'working systematically', and 'participation in multidisciplinary team meetings. Standardised patient outcome measures were scarcely used in multidisciplinary team meetings. CONCLUSION: People involved in long-term care and geriatric rehabilitation indicated that, apart from working systematically, being involved in care and multidisciplinary team meetings are essential factors for interprofessional collaboration. These factors must be taken into consideration to provide valuable, high-quality care to older people residing in long-term care and geriatric. TRIAL REGISTRATION: Not applicable.

The Difficulties of Managing Pain in People Living with Frailty: The Potential for Digital Phenotyping.

Pain and frailty are closely linked. Chronic pain is a risk factor for frailty, and frailty is a risk factor for pain. People living with frailty also commonly have cognitive impairment, which can make assessment of pain and monitoring of pain management even more difficult. Pain may be sub-optimally treated in people living with frailty, people living with cognitive impairment and those with both these factors. Reasons for sub-optimal treatment in these groups are pharmacological (increased drug side effects, drug-drug interactions, polypharmacy), non-pharmacological (erroneous beliefs about pain, ageism, bidirectional communication challenges), logistical (difficulty in accessing primary care practitioners and unaffordable cost of drugs), and, particularly in cognitive impairment, related to communication difficulties. Thorough assessment and characterisation of pain, related sensations, and their functional, emotional, and behavioural consequences ("phenotyping") may help to enhance the assessment of pain, particularly in people with frailty and cognitive impairment, as this may help to identify who is most likely to respond to certain types of treatment. This paper discusses the potential role of "digital phenotyping" in the assessment and management of pain in people with frailty. Digital phenotyping is concerned with observable characteristics in digital form, such as those obtained from sensing-capable devices, and may provide novel and more informative data than existing clinical approaches regarding how pain manifests and how treatment strategies affect it. The processing of extensive digital and usual data may require powerful algorithms, but processing these data could lead to a better understanding of who is most likely to benefit from specific and targeted treatments.

Impact of Pain and Neuropsychiatric Symptoms on Activities in Nursing Home Residents (COSMOS Trial).

OBJECTIVE: This study aims to identify whether pain and dementia-related behavior are associated with different types of activities in nursing home residents, controlled for dementia severity. DESIGN: Cross-sectional baseline data from the multicomponent cluster randomized controlled COSMOS trial (acronym for Communication, Systematic pain treatment, Medication review, Organization of activities, and Safety). SETTING AND PARTICIPANTS: A total of 723 patients from 33 Norwegian nursing homes with 67 units (clusters). Participants aged ≥65 years, with a life expectancy of >6 months, and with valid data on activity were eligible for inclusion. METHODS: Activity was operationalized in time (hours per week) and type (cognitive, social, physical, and no activity). Cognitive function was assessed using the Mini-Mental State Examination (MMSE), pain with the Mobilization-Observation-Behavior-Intensity-Dementia-2 Pain Scale (MOBID-2), and behavior with the Neuropsychiatric Inventory Nursing Home version (NPI-NH). Analyses were performed using linear and logistic regression. Sensitivity analyses for dementia severity were performed to account for effect modification. RESULTS: A total of 289 participants were included (mean age 86.2 [SD 7.6]; 74% female). A higher pain score was associated with less time spent on activity in participants with severe dementia (estimate 0.897, P = .043). A higher score for the NPI-NH mood cluster (depression and anxiety) was associated with a higher likelihood of participation in cognitive activities (odds ratio [OR], 1.073; P = .039). Apathy (OR, 0.884; P = .041) and lack of inhibition (OR, 0.904; P = .042) were associated with a lower likelihood of participation in social activities as well as no engagement in activities (apathy OR, 0.880; P = .042; lack of inhibition OR, 0.894; P = .034). CONCLUSION AND IMPLICATIONS: Pain and dementia-related behavior may influence the participation in activities in the nursing home. There is an urgent need to investigate what type of activity stimulates people in different stages of dementia.

Movement Patterns in Older Adults Recovering From Hip Fracture.

The aim of this study was to quantify physical activity and sedentary behavior in older adults recovering from hip fracture and to identify groups based on movement patterns. In this cross-sectional cohort study, older adults (≥70 years) were included 3 months after surgery for proximal femoral fracture. Patients received an accelerometer for 7 days. Demographics and outcomes related to physical function, mobility, cognitive functions, quality of life, and hip fracture were assessed. In total, 43 patients with sufficient accelerometer wear time were included. Across all groups, participants engaged in very low levels of physical activity, spending an average of 11 hr/day in prolonged sedentary behavior. Based on the extracted components from a principal component analysis, three groups with substantial differences in levels of physical activity and sedentary behavior could be distinguished.

Prevalence and burden of pain across the entire spectrum of Huntington's disease.

BACKGROUND: Pain is an important symptom in Huntington's disease (HD), however, not systematically studied and understood. The objective of the current study is to assess the prevalence of pain, pain interference in daily activities, painful conditions, analgesic use and the severity of the pain burden across different disease stages and 'Age at symptom Onset' groups. Additionally, the association between pain and disease burden was investigated. METHODS: A cross-sectional analysis was conducted within two large data sets, which included different types of pain scales. Multivariable logistic regression analyses and analyses of variance were performed to compare the pain levels with those in the general population. The analyses were adjusted for sex and age. Locally Estimated Scatterplot Smoothing was used to test the association between pain and the HD pathology score: a measure of disease burden. RESULTS: The mean prevalence of pain in the HD population was 40% and for pain interference around 35% in both data sets. Patients in the early, middle and late stage of HD experience more pain burden compared with what is reported in patients with chronic pain (p<0.01). A positive and significant association was demonstrated between pain and disease burden. Patients in late stage HD with pain use significantly less analgesics compared with the general population (5% vs 13%, respectively (p<0.01)). CONCLUSIONS: Pain is a prevalent and important symptom in HD. Severe pain burden in the HD population is present and positively associated with disease burden. Risk for undertreatment with analgesics is nevertheless present. Awareness of pain in HD needs to be increased, both clinically and scientifically.

An exploration of relocation initiatives deployed within and between nursing homes: a qualitative study.

BACKGROUND: Relocations within and between nursing homes often induce stress, anxiety, and depression in residents and cause additional workload for and burnout in staff. To prevent this, many nursing homes deploy pre-transition initiatives, bridging initiatives, and post-transition initiatives to support residents and staff during the relocation process. As little is known about these initiatives, this study aims to explore the pre-relocation, bridging and post-relocation initiatives used for relocations within and between nursing homes. METHODS: In seven Dutch nursing homes, eight focus groups were conducted with two to six participants (N = 37) who were actively involved in relocation processes in different roles (i.e., managers, healthcare professionals, support staff, client council members, residents and family). The focus groups were conducted based on a predefined topic list and lasted approximately 60 min. The transcripts were recorded, transcribed verbatim and analysed using thematic coding. RESULTS: Nursing homes had to be inventive in developing relocation initiatives as neither shared guidelines nor knowledge exchange on this topic were available. A total of thirty-seven relocation initiatives were identified in these seven nursing homes. Nineteen pre-relocation initiatives were identified, of which eight emphasized information and engagement, three highlighted training and practice and eight stressed orientation and visualization. Seven bridging initiatives were identified, of which four emphasized coordination and continuity and three highlighted entertainment and celebration. Eleven post-relocation initiatives were identified, of which seven emphasized evaluation and troubleshooting and four highlighted change and adjustment. CONCLUSION: The identified relocation initiatives were developed unassisted by nursing homes, due to a lack of shared guidelines, knowledge exchange and mutual learning on this topic. Therefore, it may be expedient and more effective to develop general guidelines for relocations within and between nursing homes in collaboration with nursing homes.

The trajectory of pain and pain intensity in the upper extremity after stroke over time: a prospective study in a rehabilitation population.

PURPOSE: To assess the presence of upper extremity pain after stroke over time and the course of its intensity in patients with persistent pain. MATERIALS AND METHODS: Patients with stroke completed a question on the presence of upper extremity pain (yes/no) and rated its intensity with a visual analogue scale (0-10) at 3, 18, and 30 months after starting multidisciplinary rehabilitation. The presence of upper extremity pain and its intensity over time were analysed with Generalized Estimating Equations models and Linear Mixed Models, respectively. RESULTS: 678 patients were included. The proportions of patients reporting upper extremity pain were 41.8, 36.0, and 32.7% at 3, 18, and 30 months, respectively, with the decline in proportions reaching statistical significance (odds ratio 0.82, 95% confidence interval 0.74-0.92, p < 0.001). At all time points, in those reporting pain the median intensity was 5.0 (interquartile ranges (IQR) 4.0-7.0 at 3 and 3.0-6.0 at 18 and 30 months). In the 73 patients with persistent pain, there was no significant change in intensity over time. CONCLUSIONS: The proportion of patients reporting upper extremity pain after stroke was considerable, despite a significant decrease in 2.5 years. In patients reporting persistent pain, the intensity did not change over time.IMPLICATIONS FOR REHABILITATIONAbout one-third of patients with stroke reported upper extremity pain at 30 months after starting rehabilitation.In patients with stroke who reported persistent upper extremity pain, there was no significant change in pain intensity over time.There is room for improvement of diagnosis and treatment of upper extremity pain in patients with stroke.

Diagnostic accuracy of urine biomarkers for urinary tract infection in older women: a case-control study.

OBJECTIVES: Urinary tract infection (UTI) is common among older women. However, diagnosis is challenging because of frequent chronic lower urinary tract symptoms, cognitive impairment, and a high prevalence of asymptomatic bacteriuria (ASB). Current urine diagnostics lack specificity, leading to unnecessary treatment and antimicrobial resistance. This study aimed to evaluate the diagnostic accuracy of 12 urine biomarkers for diagnosing UTI in older women. METHODS: In this case-control study, cases were women ≥65 years with ≥2 new-onset lower urinary tract symptoms, pyuria, and one uropathogen ≥104 CFU/mL. Controls were asymptomatic and classified as ASB (one uropathogen ≥105 CFU/mL), negative culture, or mixed flora. Urine biomarker concentrations were measured through liquid chromatography-mass spectrometry and ELISA. Diagnostic accuracy parameters of individual biomarkers and a biomarker model were derived from receiver operating characteristic curves. RESULTS: We included 162 community-dwelling and institutionalized older women. Five urine inflammatory biomarkers demonstrated high discriminative ability (area under the curve ≥0.80): interleukin 6, azurocidin, neutrophil gelatinase-associated lipocalin, tissue inhibitor of metalloproteinases 2, and C-X-C motif chemokine 9. Azurocidin exhibited the highest diagnostic accuracy (sensitivity 86% [95% CI 75%-93%] and specificity 89% [95% CI 82%-94%] at 16.7 ng/mmol creatinine). A combined biomarker and pyuria model showed improved diagnostic accuracy in patients with UTI and ASB, compared with pyuria alone. DISCUSSION: We identified several urine biomarkers that accurately differentiated older women with UTI from asymptomatic women, including ASB. These findings represent a potential advancement towards improved diagnostics for UTI in older women and warrant validation in a diverse population.

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review.

OBJECTIVES: This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain. DESIGN: Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline. DATA SOURCES: PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023. ELIGIBILITY CRITERIA: Studies reporting on family involvement in interventions for nursing home residents with dementia were included. DATA EXTRACTION AND SYNTHESIS: Two researchers independently extracted the data, followed by a content analysis. RESULTS: Of the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family's coping and skills). CONCLUSION: Best practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account. TRIAL REGISTRATION NUMBER: The protocol of the review was regisered at OSF; https://osf.io/twcfq.

Functioning and recovery during stroke rehabilitation: a comparison between pre-stroke frail and non-frail patients.

PURPOSE: Pre-stroke frailty in older adults is associated with adverse outcomes after stroke in community-based and hospital-based populations. The aim of our study was to investigate the prevalence of pre-stroke frailty among older stroke survivors receiving medical specialistic rehabilitation and its association with outcomes and recovery. METHODS: Pre-stroke frailty was measured by the Groningen Frailty Indicator (GFI, score ≥ 4 indicates frailty) in patients ≥ 65 years receiving stroke medical specialistic rehabilitation. Baseline, follow-up and change (i.e. recovery) scores of the Barthel index (BI), Stroke Impact Scale (SIS) 'mobility', 'communication', and 'memory and thinking', Hospital Anxiety and Depression Scale (HADS) and the EuroQoL-5 dimensions (EQ-5D) were compared between frail and non-frail patients with a multivariable regression model adjusting for confounders. RESULTS: Of 322 included patients (34.2% females, median age 70 years), 43 (13.4%) patients reported pre-stroke frailty. There were no differences in BI or in destination of discharge between pre-stroke frail and non-frail stroke survivors receiving inpatient rehabilitation. However, pre-stroke frailty was associated with worse follow-up scores for all other measures. Recovery in pre-stroke frail patients was less favorable compared to non-frail patients for SIS mobility, HADS subscales and EQ-5D index and visual analogue scale. CONCLUSION: Pre-stroke frailty was present in a minority of older stroke survivors receiving medical specialistic rehabilitation. BI and destination of discharge did not differ. Nevertheless, pre-stroke frailty was associated with worse functioning at follow-up for most measures of health status and with smaller improvements in mobility, mood and quality of life.

Becoming a physician for older patients: exploring the professional identity formation of medical students during a nursing home clerkship. A qualitative study.

BACKGROUND: To prepare medical students for the growing population of older patients, an appropriate professional identity formation is desirable. The community of practice of medical school is primarily hospital-based and disease-oriented which will lead to the development of a physician who is mainly focused on cure. This focus alone however is not always appropriate for older persons' health care. The aim of this study is to explore the influence of participating in a nursing home community of practice on the professional identity formation of medical students. METHODS: A qualitative study based on a constructivist research paradigm was conducted, using individual semi-structured, in-depth interviews and a visual narrative method (drawing) as a prompt. Thematic analysis was applied to structure and interpret the data. The study population consisted of fifth-year medical students participating in a six-week nursing home clerkship. Thirteen participants were purposefully sampled. The clerkship took place in nursing homes in the South-West of the Netherlands. RESULTS: The medical students described the nursing home as the living environment of the patients. Actively participating in the patients' care and experiencing the daily life of the patients was meaningful for the physician the students want to become in five ways: (1) a physician with a complete picture; (2) a physician who is close; (3) a physician who is in dialogue; (4) a physician who is able to let go and (5) a physican who collaborates. CONCLUSIONS: Caring for older patients in the nursing home influences the professional identity formation of medical students. Patient-centeredness, personal, holistic and tailored care, approachability and collaboration are important characteristics in becoming a physician for older persons' health care. The context of this care provides relevant learning experiences for this development and the becoming of a physician in general.

Consequences of contact restrictions for long-term care residents during the first months of COVID-19 pandemic: a scoping review.

During the early stages of the COVID-19 pandemic, stringent measures were implemented in most countries to limit social contact between residents of long-term care facilities (LTCF) and visitors. The objective of this scoping review was to identify and map evidence of direct and indirect consequences of contact restrictions, guided by three conceptual perspectives: (1) stress and learned helplessness (i.e., failure to use coping behaviors even when they are available and actionalble); (2) social contact loss; and (3) 'total institution' (i.e., a facility operates following a fixed plan due to spelled-out rules and norms, controlled by institutional representatives). We used the framework for conducting a scoping review by Arksey and O'Malley; included were peer-reviewed manuscripts reporting on the outcomes of contact restrictions from the beginning of the pandemic until the end of 2020. After removing duplicates, 6,656 records were screened and 62 manuscripts included. Results pertaining to the stress and learned helplessness perspective primarily focused on depressive symptoms, showing substantial increases compared to the pre-pandemic period. Studies examining cognitive and functional decline, as well as non-COVID-19 related mortality, were limited in number and presented mixed findings. The majority of study outcomes related to the social contact loss perspective focused on loneliness, but the study designs did not adequately allow for comparisons with the pre-pandemic status. The evidence concerning outcomes related to the 'total Institution' perspective was inconclusive. Although detrimental effects of social isolation in the long-term care context found support particularly in the negative affect domain, other outcome areas did not allow for definitive conclusions due to considerable variations in findings and, in some cases, insufficient statistical power.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.