Objective: This study aims to identify whether pain and dementia-related behavior are associated withdifferent types of activities in nursing home residents, controlled for dementia severity.Design... Show moreObjective: This study aims to identify whether pain and dementia-related behavior are associated withdifferent types of activities in nursing home residents, controlled for dementia severity.Design: Cross-sectional baseline data from the multicomponent cluster randomized controlled COSMOS trial (acronymfor 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 onactivity were eligible for inclusion.Methods: Activity was operationalized in time (hours per week) and type (cognitive, social, physical, andno activity). Cognitive function was assessed using the Mini-Mental State Examination (MMSE), painwith the Mobilization-Observation-Behavior-Intensity-Dementia-2 Pain Scale (MOBID-2), and behaviorwith the Neuropsychiatric Inventory Nursing Home version (NPI-NH). Analyses were performed usinglinear and logistic regression. Sensitivity analyses for dementia severity were performed to account foreffect modification.Results: A total of 289 participants were included (mean age 86.2 [SD 7.6]; 74% female). A higher painscore was associated with less time spent on activity in participants with severe dementia (estimate0.897, P = .043). A higher score for the NPI-NH mood cluster (depression and anxiety) was associatedwith a higher likelihood of participation in cognitive activities (odds ratio [OR], 1.073; P ¼ .039). Apathy(OR, 0.884; P = .041) and lack of inhibition (OR, 0.904; P = .042) were associated with a lower likelihoodof participation in social activities as well as no engagement in activities (apathy OR, 0.880; P = .042; lackof inhibition OR, 0.894; P = .034).Conclusion and Implications: Pain and dementia-related behavior may influence the participation inactivities in the nursing home. There is an urgent need to investigate what type of activity stimulatespeople in different stages of dementia. Show less
Bavelaar, L.; Visser, M.; Walshe, C.; Preston, N.; Kaasalainen, S.; Sussman, T.; ... ; Steen, J.T. van der 2023
Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an... Show moreBackground the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. Design a pretest-posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting. Show less
Background: Nursing home (NH) staff and residents have been prioritized to receive COVID-19 vaccinations. However, NH staff have been hesitant. This study explored what strategies were used to... Show moreBackground: Nursing home (NH) staff and residents have been prioritized to receive COVID-19 vaccinations. However, NH staff have been hesitant. This study explored what strategies were used to overcome this hesitancy and which of these were found to be important by NH staff to increase their willingness to take a COVID-19 vaccine. Methods: This study employed a sequential exploratory qualitative design. The COVID-19 MINUTES study aimed to describe the challenges presented by, responses to, and impact of the COVID-19 pandemic in NHs. The minutes of COVID-19 outbreak teams (COTs) in Dutch long-term care organizations (n = 41) were collected and coded using content analysis. Textual units from December 2020 to April 2021 that regarded strategies to increase staff's vaccination willingness (n = 67) were selected. Subsequently, to validate these data, two panels of NH healthcare workers (HCWs) and policy workers (PWs) (n = 8) selected, discussed, and ranked the strategies that they found to be important using a modified nominal group technique. Results: The strategies described in the minutes included financial reimbursements, personal contact, story sharing, logistics support, role models, visual information, and written information. Except for financial reimbursement, all these strategies were considered important or very important by the panel participants. Some organizations combined multiple strategies. Conclusion: The strategies that were found important in combination may be used more broadly and should be developed further with the involvement of HCWs. Show less
The most severe COVID-19 infections and highest mortality rates are seen among long-term care residents. To reduce the risk of infection, physical distancing is important. This study investigates... Show moreThe most severe COVID-19 infections and highest mortality rates are seen among long-term care residents. To reduce the risk of infection, physical distancing is important. This study investigates what physical distancing measures were discussed by COVID-19 outbreak teams of Dutch long-term care organizations and what challenges they encountered. The COVID-19 MINUTES study is a qualitative multi-center study (n = 41) that collected minutes of COVID-19 outbreak teams from March 2020 to October 2021. Textual units about distancing measures were selected and analyzed using manifest content analysis for the first wave: early March-early May 2020; the intermediate period of 2020: mid-May-mid-September 2020; and the second wave: late September 2020-mid-June 2021. During all periods, COVID-19 outbreak teams often discussed distancing visitors from residents. Moreover, during the first wave they often discussed isolation measures, during the intermediate period they often discussed distancing staff and volunteers from residents, and during both the intermediate period and the second wave they often discussed distancing among residents. During all periods, less often admission measures were discussed. Challenges persisted and included unrest among and conflicts between visitors and staff, visitors violating measures, resident non-adherence to measures, and staffing issues. The discussed distancing measures and corresponding challenges may guide local long-term care and (inter)national policymakers during the further course of the COVID-19 pandemic, outbreaks of other infectious diseases, and long-term care innovations. Show less
Verstraeten, H.M.F.; Ziylan, C.; Gerritsen, D.L.; Huijsman, R.; Nakanishi, M.; Smalbrugge, M.; ... ; Bakker, T.J.E.M. 2022
Background:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often... Show moreBackground:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often inadequately managed. Three proven effective methods for managing neuropsychiatric symptoms were integrated into a single intervention method: the STIP-Method, a personalized integrated stepped-care method to prevent and treat neuropsychiatric symptoms. The STIP-Method comprises 5 phases of clinical reasoning to neuropsychiatric symptoms and 4 stepped-care interventions and is supported with a web application.Objective:This study aims to identify the facilitators and barriers in the implementation of the STIP-Method in nursing homes.Methods:A mixed methods design within a participatory action research was used to implement the STIP-Method in 4 facilities of 2 Dutch nursing home organizations. In total, we aimed at participation of 160-200 persons with dementia and expected an intervention fidelity of 50% or more, based on earlier studies regarding implementation of effective psychosocial interventions to manage neuropsychiatric symptoms. All involved managers and professionals were trained in the principles of the STIP-Method and in using the web application. An advisory board of professionals, managers, and informal caregivers in each facility supported the implementation during 21 months, including an intermission of 6 months due to the COVID-19 pandemic. In these 6-weekly advisory board meetings, 2 researchers stimulated the members to reflect on progress of the implementation by making use of available data from patient records and the web application. Additionally, the 2 researchers invited the members to suggest how to improve the implementation. Data analysis will involve (1) analysis of facilitators and barriers to the implementation derived from verbatim text reports of advisory board meetings to better understand the implementation process; (2) analysis of patient records in accordance with multidisciplinary guidelines to neuropsychiatric symptoms: personalized, interdisciplinary, and proactive management of neuropsychiatric symptoms; (3) evaluation of the web application in terms of usability scores; (4) pre- and postimplementation analysis of patient records and the web application to evaluate the impact of the STIP-Method, such as changes in neuropsychiatric symptoms and informal caregiver burden.Results:We enrolled 328 persons with dementia. Data collection started in July 2019 and ended in December 2021. The first version of this manuscript was submitted in October 2021. The first results of data analysis are expected to be published in December 2022 and final results in June 2023.Conclusions:Our study may increase understanding of facilitators and barriers to the prevention and treatment of neuropsychiatric symptoms in nursing home residents with dementia by implementing the integrated STIP-Method. The need for well-designed implementation studies is of importance to provide nursing homes with optimal tools to prevent and treat neuropsychiatric symptoms. Show less
Verstraeten, H.M.F.; Ziylan, C.; Gerritsen, D.L.; Huijsman, R.; Nakanishi, M.; Smalbrugge, M.; ... ; Bakker, T.J.E.M. 2022
Background:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often... Show moreBackground:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often inadequately managed. Three proven effective methods for managing neuropsychiatric symptoms were integrated into a single intervention method: the STIP-Method, a personalized integrated stepped-care method to prevent and treat neuropsychiatric symptoms. The STIP-Method comprises 5 phases of clinical reasoning to neuropsychiatric symptoms and 4 stepped-care interventions and is supported with a web application.Objective:This study aims to identify the facilitators and barriers in the implementation of the STIP-Method in nursing homes.Methods:A mixed methods design within a participatory action research was used to implement the STIP-Method in 4 facilities of 2 Dutch nursing home organizations. In total, we aimed at participation of 160-200 persons with dementia and expected an intervention fidelity of 50% or more, based on earlier studies regarding implementation of effective psychosocial interventions to manage neuropsychiatric symptoms. All involved managers and professionals were trained in the principles of the STIP-Method and in using the web application. An advisory board of professionals, managers, and informal caregivers in each facility supported the implementation during 21 months, including an intermission of 6 months due to the COVID-19 pandemic. In these 6-weekly advisory board meetings, 2 researchers stimulated the members to reflect on progress of the implementation by making use of available data from patient records and the web application. Additionally, the 2 researchers invited the members to suggest how to improve the implementation. Data analysis will involve (1) analysis of facilitators and barriers to the implementation derived from verbatim text reports of advisory board meetings to better understand the implementation process; (2) analysis of patient records in accordance with multidisciplinary guidelines to neuropsychiatric symptoms: personalized, interdisciplinary, and proactive management of neuropsychiatric symptoms; (3) evaluation of the web application in terms of usability scores; (4) pre- and postimplementation analysis of patient records and the web application to evaluate the impact of the STIP-Method, such as changes in neuropsychiatric symptoms and informal caregiver burden.Results:We enrolled 328 persons with dementia. Data collection started in July 2019 and ended in December 2021. The first version of this manuscript was submitted in October 2021. The first results of data analysis are expected to be published in December 2022 and final results in June 2023.Conclusions:Our study may increase understanding of facilitators and barriers to the prevention and treatment of neuropsychiatric symptoms in nursing home residents with dementia by implementing the integrated STIP-Method. The need for well-designed implementation studies is of importance to provide nursing homes with optimal tools to prevent and treat neuropsychiatric symptoms. Show less
COVID-19 posed enormous challenges for nursing home staff, which may have caused stress and mental health problems. This study aimed to measure the prevalence of mental health problems among... Show moreCOVID-19 posed enormous challenges for nursing home staff, which may have caused stress and mental health problems. This study aimed to measure the prevalence of mental health problems among nursing home staff and investigate the differences in job demands, work functioning and mental health between staff with and without COVID contact or COVID infection and across different levels of COVID worries. In this cross-sectional study, 1669 employees from 10 nursing home organizations filled in an online questionnaire between June and September 2020. The questionnaire measured the participants' characteristics, COVID contact, infection and worries, job demands, work functioning, depressive symptoms and burnout. Differences were investigated with multilevel models to account for clustering at the organization level. Of the participants, 19.1% had high levels of depressive symptoms and 22.2% burnout. Job demands, work functioning, depressive symptoms and burnout differed between participants who never worried and participants who often or always worried about the COVID crisis. Differences were smaller for participants with and without COVID contact or infection. Most models improved when clustering was accounted for. Nursing homes should be aware of the impact of COVID worries on job demands, work functioning and mental health, both at the individual and organizational level. Show less
Klapwijk, M.S.; Bolt, S.R.; Boogaard, J.A.N.; Koppel, M. ten; Gijsberts, M.J.H.E.; Leussen, C. van; ... ; Steen, J. van der 2021
Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality... Show moreBackground: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Design: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia. Show less
Smaling, H.J.A.; Joling, K.J.; Achterberg, W.P.; Francke, A.L.; Steen, J.T. van der 2021
Aim To compare the Positive Experiences Scale (PES), Gain in Alzheimer Care INstrument (GAIN) and Positive Aspects of Caregiving (PAC) in assessing positive caregiving experiences among caregivers... Show moreAim To compare the Positive Experiences Scale (PES), Gain in Alzheimer Care INstrument (GAIN) and Positive Aspects of Caregiving (PAC) in assessing positive caregiving experiences among caregivers of nursing home residents with dementia, and to explore which caregiver and care recipient characteristics relate to positive caregiving experiences.Methods A total of 63 caregivers (mean age 59.2 years; SD 11.8) of nursing home residents with dementia from four Dutch nursing homes participated in this cross-sectional observational study. Internal consistency, convergent validity and user-friendliness (i.e. perception of item relevance and comprehensibility, ease of use, missing items, and user preference) were examined using Cronbach's alpha's, correlation coefficients and descriptive statistics, respectively.Results The Cronbach's alpha for the GAIN, PAC and PES was 0.90, 0.94 and 0.68, respectively. The sum score of the PES showed a ceiling effect. Convergent validity was confirmed for all three instruments. The PES had the least missing data (mean number of missing items 0.2, SD 0.5) and was preferred by 40% of the caregivers, followed by the GAIN (mean number of missing items 0.6, SD 1.7, preferred by 11%). Positive caregiving experiences were negatively associated with educational level (range -0.28 to -0.35). Only the PES correlated positively with caregiver age (r = 0.25).Conclusions All three questionnaires can be used to assess positive caregiving experiences, but the GAIN might be the most suitable questionnaire for caregivers of nursing home residents with dementia. Further research is necessary to examine generalizability of the findings. Geriatr Gerontol Int 2021; center dot center dot: center dot center dot-center dot center dot. Show less
Objectives: Maintenance of independence is a challenge for nursing home residents whose pain is often substantial. The objective of this study was to explore the relationship between pain... Show moreObjectives: Maintenance of independence is a challenge for nursing home residents whose pain is often substantial. The objective of this study was to explore the relationship between pain perception and care dependency in a population of Dutch nursing home residents.Design: Prospective cohort study. Setting and participants: Dutch nursing home residents aged 65 or older, excluding residents with a severe cognitive impairment.Methods: The Numeric Rating Scale (NRS) was used to rate pain perception from 0 to 10 in half-point increments and the Care Dependency Scale (CDS) to measure care dependency, with scores ranging from 15 (completely care dependent) to 75 (fully independent). Both measurements were repeated after a 2-month follow-up. Multiple linear regression analysis was used to adjust for potential confounders. Missing data were dealt with by performing tenfold multiple imputation.Results: A total of 1256 residents (65% women, mean age 83 years) were included. At baseline, the median NRS pain score was 3.0 (interquartile range 0.0-6.0) and the mean CDS score was 55.9 (SD 11.5). Cross-sectionally, for 1-point increase in pain score, care dependency increased 0.65 points [95% confidence interval (CI) 0.46-0.83]. More pain at baseline was associated with slightly lower care dependency after 2 months (beta 0.20, 95% CI 0.01-0.39). Compared with residents whose pain decreased over 2 months, residents with stable pain or increased pain had a 2.27-point (95% CI 0.83-3.70) and 2.39 point (95% CI 0.87-3.90) greater increase in care dependency, respectively.Conclusions and implications: Pain perception and care dependency are associated in a population of older nursing home residents, and stable or increased pain is associated with increased care dependency progression. The findings of this study emphasize that pain and care dependency should not be assessed nor treated independently. (C) 2020 The Author(s). Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Show less
Velde-van Buuringen, M. van der; Achterberg, W.P.; Caljouw, M.A.A. 2020
Aim: To evaluate the process of daily going outside in a nursing home garden and explore the effect of garden use on quality of life and neuropsychiatric symptoms in persons with dementia.Design: A... Show moreAim: To evaluate the process of daily going outside in a nursing home garden and explore the effect of garden use on quality of life and neuropsychiatric symptoms in persons with dementia.Design: A feasibility study with quantitative and qualitative approaches.Methods: Twenty residents with a diagnosis of moderate-to-severe dementia participated. The intervention consisted of at least 30 min of garden use, whereby any activity outside is possible as long as it is person-centred and fitting within usual daily nursing home practice. Interviews were held with caregivers, and questionnaires were sent to other disciplines involved. Quality of life (QUALIDEM) and neuropsychiatric symptoms (NPI-NH) were collected at baseline, intervention and postintervention.Results: Caregivers experienced and observed benefits of going outside for themselves, in residents and relatives. Incorporating daily garden use does not imply an additional task, but rather rearranging priorities and doing the usual activities outside a part of the time. Show less
Background: The lack of interoperable IT systems between residential aged care facilities (RACF) and general practitioners (GP) in primary care settings in Australia introduces the potential for... Show moreBackground: The lack of interoperable IT systems between residential aged care facilities (RACF) and general practitioners (GP) in primary care settings in Australia introduces the potential for medication discrepancies and other medication errors. The aim of the GRACEMED study is to determine the extent and potential severity of medication discrepancies between general practice and RACFs, and identify factors associated with medication discrepancies.Methods: A cross sectional study of medication discrepancies between RACF medication orders and GP medication lists was conducted in the Sydney North Health Network, Australia. A random sample of RACF residents was included from practice lists provided by the general practices. RACF medication orders and GP medication lists for the included residents were compared, and medication discrepancies between the two sources were identified and characterised in terms of discrepancy type, potential for harm and associated factors.Results: 31 GPs and 203 residents were included in the study. A total of 1777 discrepancies were identified giving an overall discrepancy rate of 72.6 discrepancies for every 100 medications. Omissions were the most common discrepancy type (35.2%,) followed by dose discrepancies (34.4%) and additions (30.4%). 48.5% of residents had discrepancy with the potential to result in moderate harm and 9.8% had a discrepancy with the potential for severe harm. Number of medications prescribed was the only factor associated with medication discrepancies.Conclusion: Increased use of systems that allow information sharing and improved interoperability of clinical information is urgently needed to address medication safety issues experienced by RACF residents. Show less
The COVID-19 pandemic has disproportionately affected care home residents internationally, with 19-72% of COVID-19 deaths occurring in care homes. COVID-19 presents atypically in care home... Show moreThe COVID-19 pandemic has disproportionately affected care home residents internationally, with 19-72% of COVID-19 deaths occurring in care homes. COVID-19 presents atypically in care home residents and up to 56% of residents may test positive whilst pre-symptomatic. In this article, we provide a commentary on challenges and dilemmas identified in the response to COVID-19 for care homes and their residents. We highlight the low sensitivity of polymerase chain reaction testing and the difficulties this poses for blanket screening and isolation of residents. We discuss quarantine of residents and the potential harms associated with this. Personal protective equipment supply for care homes during the pandemic has been suboptimal and we suggest that better integration of procurement and supply is required. Advance care planning has been challenged by the pandemic and there is a need to for healthcare staff to provide support to care homes with this. Finally, we discuss measures to implement augmented care in care homes, including treatment with oxygen and subcutaneous fluids, and the frameworks which will be required if these are to be sustainable. All of these challenges must be met by healthcare, social care and government agencies if care home residents and staff are to be physically and psychologically supported during this time of crisis for care homes. Show less
Miranda, R.; Steen, J.T. van der; Smets, T.; Noortgate, N. van den; Deliens, L.; Payne, S.; ... ; PACE 2020
Objectives We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia. Methods Epidemiological... Show moreObjectives We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia. Methods Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments. Results The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P= .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P< .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia,P= .04; other stages of dementia,P= .04; without dementia,P< .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P< .001) and without dementia (P= .003), while the presence and severity of dementia moderated this association (P= .03). Developing "other clinical events" was not associated with comfort. Conclusions Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia. Show less
Honinx, E.; Smets, T.; Piers, R.; Deliens, L.; Payne, S.; Kylanen, M.; ... ; European Forum Primary Care Age Pl 2019
