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Objectives In nursing homes (NHs), 30% to 60% of patients experience daily pain and >80% have dementia. This can lead to neuropsychiatric symptoms, including psychosis symptoms such as delusion. We investigated if there was a relationship between pain and psychosis symptoms over time. We also aimed to investigate the effect of a multicomponent intervention (COSMOS) on pain, psychosis symptoms, and analgesic prescription. Design COSMOS is a cluster-randomized, single blinded, controlled trial. Each NH unit was defined as a cluster and randomized to either the COSMOS intervention or care as usual. The COSMOS intervention is a multicomponent intervention, consisting of staff training in communication, pain treatment, medication review, organization of activities, and safety. The intervention lasted for 4 months with a follow-up at month 9. Setting and Participants Sixty-seven units from 33 Norwegian NHs in 8 municipalities. The study included 723 patients aged ≥65 years, residing at the NH ≥2 weeks before inclusion. Patients with a life expectancy

Background Between 40%-60% of nursing home patients with dementia suffer from chronic and acute pain despite increasing their analgesic drug prescription. Aims Determine the locations and intensity of pain and the association between quality of life (QoL) and four stratified pain–analgesic groups: (1) pain—analgesics treatment; (2) pain—no analgesics; (3) no pain—analgesics treatment; and (4) no pain—no analgesics. Design Multicenter, multicomponent cluster randomized controlled Communication, Systematic assessment and treatment of pain, Medication review, Occupational therapy, and Safety - an effectiveness (COSMOS) trial. Participants At baseline, 723 nursing home patients were enrolled; 463 were completely evaluated for the presence of pain and included in the cross-sectional analyses. Methods Data were collected using the following tests: Cognitive function (Mini-Mental-State Evaluation [MMSE]); Quality of Life in Late stage of Dementia (QUALID); Dementia-Specific QoL (QUALIDEM); Mobilization–Observation–Behavior–Intensity–Dementia Pain Scale (MOBID-2); and number of analgesic drug prescriptions. Analysis of covariance (ANCOVA) was used to compare pain and QoL across pain–analgesics groups. Results The majority of participants (78%) had moderate-to-severe dementia, were female (74%), and a mean age of 86.7 years. Almost 44% reported clinically significant pain, whereas 69% had ≥2 pain locations, especially in the musculoskeletal system. Some 33.5% of participants had pain receiving analgesics, 10% had pain with no analgesics, and 27% had no pain receiving analgesics. Patients evaluated with clinically significant pain intensity scores had lower QoL (

Objective To investigate the impact of medication reviews using collegial mentoring and systematic clinical evaluation on psychotropic prescriptions, behavioral and psychological symptoms of dementia (BPSD), and activities of daily living (ADL). Design Four-month multicenter, multicomponent, cluster-randomized, single-blinded controlled trial. Setting Thirty-three Norwegian nursing homes including 67 nursing home wards (clusters). Participants A total of 723 enrolled patients, of which 428 participated in the study; 217 were randomized to the intervention and 211 to care as usual (control). Intervention The COSMOS intervention consisted of Communication, Systematic pain management, Medication reviews, Organization of activities, and Safety. During medication review, the nursing home physician evaluated treatment with colleagues systematically using the results from validated clinical assessments. Measurements Mean changes from baseline to month 4 in the number of prescribed psychotropic drugs (antipsychotics, anxiolytics, hypnotics or sedatives, antidepressants, and antidementia drugs); Neuropsychiatric Inventory Nursing Home Version (NPI-NH) and Cornell Scale of Depression in Dementia (CSDD); Lawton and Brody's Physical Self Maintenance Scale (PSMS). Results Compared to control, the mean change in prescribed psychotropic drugs was reduced both in total and regular number, while mean changes in NPI-NH and CSDD scores did not differ between the groups. Mean change in PSMS showed improvement in the intervention group, and deterioration in the control group. Conclusion Medication reviews using collegial mentoring and systematic clinical evaluation led to safe deprescribing, as the reductions in psychotropic drug use did not negatively affect BPSD, while ADL improved.

Background General practitioners (GPs) may play an important role in providing end-of-life care to community-dwelling people. Objective To investigate patients' contacts with GPs, GPs' interdisciplinary collaboration, out-of-hours services and hospitalizations in the last 13 weeks of life and associations with dying at home. Second, investigate whether GP contacts were associated with fewer out-of-hours contacts or days hospitalized. Methods Individually linked data from the Norwegian Cause of Death Registry, Norwegian Patient Registry, Statistics Norway and Control and Payment of Reimbursement to Health Service Providers database for all 80 813 deceased people in Norway within 2012–13. Outcomes were analyzed with logistic regression and negative binomial multilevel mixed-effect models. Results Overall, 1% of people received GP home visits in Week 13 and 4.6% in the last week before death. During the last 4 weeks of life, 9.2% received one or more GP home visits. Altogether, 6.6% received one or more home visits when the GP had one or more interdisciplinary collaborations during the last 4 weeks, of which Conclusions GPs play a role in enabling people to die at home by performing home visits and collaborating with other health care personnel. Only a minority received such services in Norway.

Background Few studies have estimated planned home deaths compared to actual place of death in a general population or the longitudinal course of home nursing services and associations with place of death. We aimed to investigate trajectories of nursing services, potentially planned home deaths regardless of place of death; and associations of place of death with potentially planned home deaths and nursing service trajectories, by analyzing data from the last 90 days of life. Methods A retrospective longitudinal study with data from the Norwegian Cause of Death Registry and National registry for statistics on municipal healthcare services included all community-dwelling people who died in Norway 2012–2013 (n = 53,396). We used a group-based trajectory model to identify joint trajectories of home nursing (hours per week) and probability of a skilled nursing facility (SNF) stay, each of the 13 weeks leading up to death. An algorithm estimated potentially planned home deaths. We used a multinomial logistic regression model to estimate associations of place of death with potentially planned home deaths, trajectories of home nursing and short-term SNF. Results We identified four home nursing service trajectories: no (46.5%), accelerating (7.6%), decreasing (22.1%), and high (23.5%) home nursing; and four trajectories of the probability of a SNF stay: low (69.0%), intermediate (6.7%), escalating (15.9%), and increasing (8.4%) SNF. An estimated 24.0% of all deaths were potentially planned home deaths, of which a third occurred at home. Only high home nursing was associated with increased likelihood of a home death (adjusted relative risk ratio (aRRR) 1.29; CI 1.21–1.38). Following any trajectory with elevated probability of a SNF stay reduced the likelihood of a home death. Conclusions We estimated few potentially planned home deaths. Trajectories of home nursing hours and probability of SNF stays indicated possible effective palliative home nursing for some, but also missed opportunities of staying at home longer at the end-of-life. Continuity of care seems to be an important factor in palliative home care and home death.

People with dementia may be unable to verbally express pain and suffer from untreated pain. Use of analgesics in people with dementia has increased during the last decade, in particular opioid analgesics with high potential for adverse effects.This article presents a systematic review of the current evidence for safety and tolerability of analgesic drugs from randomized controlled trials in people with dementia. Relevant trials were identified by a literature search in the EMBASE, MEDLINE, and Cochrane databases from inception to November 2018. The search included the main terms 'dementia' and 'analgesic' or their subterms, and was filtered to limit results to clinical trials.Although pain treatment is increasingly recognized as an important clinical issue in people with advanced dementia, there is currently a lack of evidence to support safety evaluations of commonly used analgesics in this group. To inform treatment decisions and enable care providers to appropriately monitor patients at risk of adverse effects, it is necessary to conduct well-designed clinical trials to investigate the relative efficacy and safety of analgesics in people with dementia, with particular emphasis on harmful effects of long-term opioid use as well as short-term use of nonsteroidal anti-inflammatory drugs.

Objectives To investigate if the multicomponent intervention of the COSMOS trial, combining communication, systematic pain management, medication review, and activities, improved quality of life (QoL) in nursing home patients with complex needs. Design Multicenter, cluster-randomized, single-blinded, controlled trial. Setting Thirty-three nursing homes with 67 units (clusters) from 8 Norwegian municipalities. Participants Seven hundred twenty-three patients with and without dementia (≥65 years) were cluster randomized to usual care or intervention in which health care staff received standardized education and on-site training for 4 months with follow-up at month 9. Measurements Primary outcome was change in QoL as measured by QUALIDEM (QoL dementia scale); QUALID (QoL late-stage dementia scale), and EQ-VAS (European QoL–visual analog scale) from baseline to month 4. Secondary outcomes were activities of daily living (ADL), total medication, staff distress, and clinical global impressions of change (CGIC). Results During the active intervention, all 3 QoL measures worsened, 2 significantly (QUALID P = .04; QUALIDEM P = .002). However, follow-up analysis from month 4 to 9 showed an intervention effect for EQ-VAS (P = .003) and QUALIDEM total score (P = .01; care relationship P = .02; positive affect P = .04, social relations P = .01). The secondary outcomes of ADL function, reduction of medication (including psychotropics) and staff distress, improved significantly from baseline to month 4. Intervention effects were also demonstrated for CGIC at month 4 (P = .023) and 9 (P = .009), mainly because of deterioration in the control group. Conclusion and implications Temporarily, the QoL decreased in the intervention group, leading to our hypothesis that health care staff may be overwhelmed by the work-intensive COSMOS intervention period. However, the decrease reversed significantly during follow-up, indicating a potential learning effect. Further, the intervention group improved in ADL function and received less medication, and staff reported less distress and judged COSMOS as able to bring about clinically relevant change. This suggests that nonpharmacologic multicomponent interventions require long follow-up to ensure uptake and beneficial effects.

Background There is a knowledge gap regarding factors that may influence the access to different devices for home-dwelling people with dementia (PwD). The aim of this study was to identify different assistive technology and telecare (ATT) devices installed in the home and key factors associated with access to such technology. Methods The baseline data came from the LIVE@Home.Path trial, a 24-month multi-component intervention including PwDs and their informal caregivers (dyads) and were collected through semi-quantitative questionnaires in three Norwegian municipalities between May and November of 2019. Regression models were applied to detect demographic and clinical factors associated with access to ATT. Results Of 438 screened dyads, 276 were included at baseline. The mean ages of the PwDs and caregivers were 82 ± 7.0 and 66 ± 12 years, respectively, and 62.8% of the PwD were female and 73.5% had access to any type of ATT. The majority had traditional equipment such as stove guards (43.3%) and social alarms (39.5%) or everyday technology, e.g. calendar support and door locks (45.3%). Multivariate regression analyses revealed that access to a social alarm was more often available for females than males, at increased age, and when the PwD lived alone, while tracking devices (14.9%) were more often accessible at lower age. Everyday technology was more often available for females, at increased age of the PwD and the caregiver, higher comorbidity, and poor IADL (instrumental activities of daily living) function. For PwDs with severe dementia, access to ATT was significantly associated with poor IADL function, having their children as the main caregiver (61.3%), and having caregivers who contributed 81–100% to their care (49.5%). Conclusions Home-dwelling PwDs mainly had access to traditional and obligated devices, followed by everyday technology. There is unmet potential for communication, tracking, and sensing technology, especially for devices not offered by the municipalities. Gender, ages of the PwD and caregiver, cohabitation status, and physical function were the main associated factors for access to ATT. Trial registration: ClinicalTrials.gov NCT04043364.

Objectives We aimed to describe pain, use of analgesics and quality of life (QoL) in people with dementia admitted to a Norwegian nursing home (NH), and to explore if and how pain was associated with their QoL when adjusting for sociodemographic characteristics, other health conditions and use of analgesics. Method A total of 953 Norwegian NH residents with dementia (mean age 84.0, SD 7.5 years, 35.8% men) were included at admission to the NH. Pain and QoL were assessed using the Mobilization-Observation-Behavior-Intensity-Dementia-2 (MOBID-2) Pain Scale and the Quality of Life in Late-Stage Dementia (QUALID) scale, respectively. Severity of dementia, personal level of activities of daily living, general medical health, neuropsychiatric symptoms, and the use of psychotropic drugs and analgesics were assessed. Results In total, 36% of the participants had clinically relevant pain intensity (MOBID-2 ≥ 3) and 52% received analgesics. Paracetamol was most frequently prescribed (45%). In an adjusted linear mixed model, more severe pain was associated with higher QUALID total scores, indicating poorer QoL (regression coefficient 0.52, 95% CI 0.36-0.69). Conclusion Pain prevalence at NH admission was high in residents with dementia; half used analgesics, particularly paracetamol. More severe pain was associated with poorer QoL when adjusting for sociodemographic characteristics, other health conditions, and use of analgesics. The routine assessment of pain at NH admission can uncover undiagnosed and untreated pain and allow for adequate non-pharmacological and pharmacological pain management and likely increased QoL.

Alzheimer’s disease and related dementias (ADRD), pain and chronic complex conditions (CCC) often co-occur leading to polypharmacy and with potential inappropriate medications (PIMs) use, are important risk factors for adverse drug reactions and hospitalizations in older adults. Many US veterans are at high risk for persistent pain due to age, injury or medical illness. Concerns about inadequate treatment of pain—accompanied by evidence about the analgesic efficacy of opioids—has led to an increase in the use of opioid medications to treat chronic pain in the Veterans Health Administration (VHA) and other healthcare systems. This study aims to investigate the relationship between receipt of pain medications and centrally (CNS) acting PIMs among veterans diagnosed with dementia, pain intensity, and CCC 90-days prior to hospitalization. The final analytic sample included 96,224 (81.7%) eligible older veterans from outpatient visits between October 2012–30 September 2013. We hypothesized that veterans with ADRD, and severe pain intensity may receive inappropriate pain management and CNS-acting PIMs. Seventy percent of the veterans, and especially people with ADRD, reported severe pain intensity. One in three veterans with ADRD and severe pain intensity have an increased likelihood for CNS-acting PIMs, and/or opioids. Regular assessment and re-assessment of pain among older persons with CCC, patient-centered tapering or discontinuation of opioids, alternatives to CNS-acting PIMs, and use of non-pharmacological approaches should be considered.

Wilco P Achterberg,1 Ane Erdal,2 Bettina S Husebo,2 Miriam Kunz,3 Stefan Lautenbacher4 1Department of Public Health and Primary Care, Leiden University Medical Center, RC Leiden, 2300, the Netherlands; 2Department of Global Public Health and Primary Care, University of Bergen, Bergen, 5020, Norway; 3Department of Medical Psychology, University of Augsburg, Augsburg, 86156, Germany; 4Department of Physical Psychology, University of Bamberg, Bamberg, GermanyCorrespondence: Wilco P AchterbergDepartment of Public Health and Primary Care, Leiden University Medical Center, Hippocratespad 21, Postzone V0-P, Room V6-76, PO Box 9600, RC Leiden, 2300, the NetherlandsTel +31 71 5268412/8427; + 31 6 23668980Email w.p.achterberg@lumc.nlAbstract: In dementia, neuropathological changes alter the perception and expression of pain. For clinicians and family members, this knowledge gap leads to difficulties in recognizing and assessing chronic pain, which may consequently result in persons with dementia receiving lower levels of pain medication compared to those without cognitive impairment. Although this situation seems to have improved in recent years, considerable geographical variation persists. Over the last decade, opioid use has received global attention as a result of overuse and the risk of addiction, while the literature on older persons with dementia actually suggests undertreatment. This review stresses the importance of reliable assessment and the regular evaluation and monitoring of symptoms in persons with dementia. Based on current evidence, we concluded that chronic pain is still undertreated in dementia.Keywords: pain, dementia, assessment, analgesic treatment

The COVID-19 restrictions affect daily living in Norway, including home-dwelling people with dementia, and researchers conducting clinical trials in dementia care. In this paper, we 1) describe the development of a pandemic cohort (PAN.DEM) incorporated in the LIVE@Home.Path, an ongoing clinical intervention trial on resource utilisation including home-dwelling people with dementia and their caregivers (N = 438 dyads), 2) describe pre-pandemic use of assistive technology and 3) explore the extent to which COVID-19 restrictions increase caregivers interest in innovation in the PAN.DEM cohort (N = 126). Our main finding is that assistive technology is available to 71% pre-pandemic; the vast majority utilise traditional stove guards and safety alarms, only a few operate sensor technology, including GPS, fall detectors or communication aids. In response to COVID-19, 17% show increased interest in technology; being less familiar with operating a telephone and having higher cognitive functioning are both associated with increased interest. We conclude that wearable and sensor technology has not yet been fully implemented among people with dementia in Norway, and few caregivers show increased interest under the restrictions. Clinicaltrials.gov (NCT0404336)

Background Traditional performance-based measurements of mobility fail to recognize the interaction between the individual and their environment. Life-space (LS) forms a central element in the broader context of mobility and has received growing attention in gerontology. Still, knowledge on LS in the nursing home (NH) remains sparse. The aim of this study was to identify LS trajectories in people with dementia from time of NH admission, and explore characteristics associated with LS over time. Methods In total, 583 people with dementia were included at NH admission and assessed biannually for 3 years. LS was assessed using the Nursing Home Life-Space Diameter. Association with individual (age, sex, general medical health, number of medications, pain, physical performance, dementia severity, and neuropsychiatric symptoms) and environmental (staff-to-resident ratio, unit size, and quality of the physical environment) characterises was assessed. We used a growth mixture model to identify LS trajectories and linear mixed model was used to explore characteristics associated with LS over time. Results We identified four groups of residents with distinct LS trajectories, labelled Group 1 (n = 19, 3.5%), Group 2 (n = 390, 72.1%), Group 3 (n = 56, 10.4%), Group 4 (n = 76, 14.0%). Being younger, having good compared to poor general medical health, less severe dementia, more agitation, less apathy, better physical performance and living in a smaller unit were associated with a wider LS throughout the study period. Conclusion From NH admission most NH residents’ LS trajectory remained stable (Group 2), and their daily lives unfolded within their unit. Better physical performance and less apathy emerged as potentially modifiable characteristics associated with wider LS over time. Future studies are encouraged to determine whether LS trajectories in NH residents are modifiable, and we suggest that future research further explore the impact of environmental characteristics. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Background COVID-19 isolated home-dwelling people with dementia (PwD) from home care services, respite care, and daytime activities. We aimed to investigate the consequences of these restrictions on informal (family, friends) and formal (homecare staff) resource utilization among co-residing (e.g., spouses) and visiting caregivers (e.g., children). Methods 105 PwD (≥65 years old) and their caregivers were included in the prospective PANdemic in DEMentia (PAN.DEM) study, which was initiated when the ongoing stepped-wedge, cluster randomized LIVE@Home.Path trial (N = 438) was temporarily halted due to the pandemic. Primary outcome was change in resource utilization assessed by the Resource Utilization in Dementia Care (RUD) instrument in pre- (12 Dec. 2019 to 11 Mar. 2020) and during the lockdown periods (20 April 2020 to 15 May 2020). Degree of cognitive impairment was assessed by Mini-Mental Status Examination (MMSE), and physical functioning and independent living skills by Physical Self-Maintenance Scale and Lawton Instrumental Activities of Daily Living Scale. Associations between informal and formal care utilization, socio-demographics, and clinical variables were assessed by descriptive statistics and Ordinary Least Squares models (OLS). Results Mean age for PwD was 81.8 years; 61% were female; 45.6% lived alone, and the mean MMSE score was 20.8 (SD ± 3.7). PwD with co-residents (44%) were younger (78.4 years) than those who were living alone (84.5 years; P P P P = 0.005). Higher cognitive function (β = − 0.64, CI, − 1.26 – 0.02, P = 0.044) was associated with reduction in home nursing service during the lockdown. Conclusion The care situation for PwD changed dramatically in the early phase of the COVID-19 pandemic, especially for those living alone who received less support from homecare services and visiting caregivers. For future crises and the forthcoming post-pandemic period, health authorities must plan better and identify and prioritize those in greatest need. Trial registration ClinicalTrials.gov; NCT04043364.

Background: As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path-trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. Methods: Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after six months intervention.Results: We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. Conclusion: We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons’ fundamental rights to participate in decision-making processes.

Objectives Neuropsychiatric symptoms (NPS) are very common in older patients with dementia. There is increasing evidence that hypoperfusion of the brain plays a role in the development of NPS. The aim of this study is to assess whether there is an association between low systolic blood pressure (SBP) and NPS and if NPS are more prevalent in older people with dementia using antihypertensive medication. Methods We studied the baseline data from participants in the Communication, Systematic pain treatment, Medication review, Organized activities and Safety study, a multicenter clustered trial with 765 participants from 72 nursing home units from 37 nursing homes in Norway. SBP (lowest quartile vs rest) and use of antihypertensive medication were predictors and Neuropsychiatric Inventory—Nursing Home version (NPI-NH) score (total and clusters) was the outcome. Missing data were imputed, except for missing data in predictors. We used a mixed model analysis adjusted for age, sex and Minimal Mental State Examination (MMSE) score. In a sensitivity analysis, continuous SBP values were used. Results In total, 412 patients were included with a mean age of 86.9 years, 53.9% had a MMSE score of

ZusammenfassungDie Altersrevolution verandert die Zusammensetzung unserer Gesellschaft. Immer mehr Menschen erreichen ein sehr hohes Alter und haben damit ein gro ss eres Risiko, Schmerz und Demenz zu entwickeln. Schmerz wird gewohnlich auf verbalem Weg kommuniziert, eine Fahigkeit, die bei Menschen mit Demenz zunehmend verloren geht. In der Folge leiden die Betroffenen unnotigerweise an behandelbarem, aber unerkanntem Schmerz. Die Schmerzerfassung bei Patienten mit Demenz ist eine Herausforderung, wobei die Forschung rasche Fortschritte verzeichnet. Instrumente und Protokolle zur Schmerzerfassung (hauptsachlich Fremdeinschatzungsskalen) wurden in nationale und internationale Leitlinien fur die Schmerzerfassung bei alteren Menschen aufgenommen. Fur eine effektive Schmerzerfassung ist eine interdisziplinare Zusammenarbeit von Pflegekraften, Arzten, Psychologen, Informatikern und Ingenieuren von grundlegender Bedeutung. Auch die Schmerzbehandlung erfolgt bei dieser vulnerablen Patientengruppe bevorzugt interdisziplinar. Nichtmedikamentose Therapieprogramme wurden uberwiegend an jungeren Populationen ohne Demenz untersucht. Viele dieser Ansatze sind jedoch relativ sicher, haben sich als wirksam erwiesen und sollten daher in Schmerztherapieprogrammen an erster Stelle stehen. Paracetamol ist ein relativ sicheres und wirksames Analgetikum der ersten Wahl. In Bezug auf die Anwendung von nichtsteroidalen Antirheumatika, Opioiden und Koanalgetika bei Patienten mit Demenz bestehen dagegen zahlreiche Sicherheitsrisiken. Daher werden regelma ss ige Kontrollen des Schmerzes wie auch der potenziellen Nebenwirkungen empfohlen. Fur eine bessere Orientierung in der Schmerzbehandlung bei Demenz ist weitere Forschung notwendig.

Background As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path- trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a feasibility study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes.Methods Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader participated in in-depth or focus group interviews, sharing their experiences with participation in the feasibility trial after six months intervention.Results We found that the coordinators fulfilled three functions for the participating dyads: being a safety net , meaning that the dyads had little needs at the moment, but established a relation to someone who might help if the situation should change; being a pathfinder , meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support , meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. Conclusion We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons’ fundamental rights to participate in decision-making processes.

Background Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. Research objective This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. Research design A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations. Participants and research context Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. Ethical considerations Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants’ integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. Findings The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants’ assessments of daycare centers relied on specific aspects, with high individual variety. Discussion and conclusion The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons’ everyday life. This indicates that patient participation in decision-making processes for this group is—in addition to be a judicial and ethical requirement—crucial to ensure adequate care and support.

Background: Over the last decades, a considerable number of observational scales have been developed to assess pain in persons with dementia. The time seems ripe now to build on the knowledge and expertize implemented in these scales to form an improved, “best‐of” meta‐tool. The EU‐COST initiative “Pain in impaired cognition, | KUNZ et al. 193 1 | INTRODUCTION The need for better pain assessment in cognitively impaired individuals who are not able to verbally communicate their pain, including people with dementia, has been widely acknowledged (Achterberg et al., 2013; Hadjistavropoulos et al., 2014). Standard pain assessment methods that rely heavily on self‐report lead to a dramatic under‐detection and under‐treatment of pain in these patient groups (Gibson & Lautenbacher, 2017; Hadjistavropoulos et al., 2014). To improve this situation, a considerable number of diverse observational scales has been developed, which aim to assess pain by observing behavioural responses, mainly including facial expressions, body movements and vocalizations (see Herr, Zwakhalen, & Swafford, 2017; Zwakhalen, Hamers, Abu‐ Saad, & Berger, 2006; Zwakhalen, Herr, & Swafford, 2017 for reviews). Most of these tools have undergone initial psychometric testing; however, many were not developed using evidence‐based methods and they lack comprehensive psychometric data from larger samples of patients. Few define the specific situation in which assessment should take place (e.g. rest vs. activity of daily living), most were not developed for ease of use in clinical settings. Moreover, given the considerable number of scales, it is difficult to gather comparable data. As a result, no widely accepted and internationally agreed‐upon tool for detecting pain in individuals with cognitive impairment exists and national guidelines vary in recommendations. To change this, we initiated a collaboration and combined clinical, research and methodological expertize from different European countries and disciplines, with the aim to develop an internationally agreed‐upon tool to assess pain in individuals with cognitive impairment, especially dementia (Corbett et al., 2014). After reviewing and discussing the many existing scales, we came to the conclusion that all relevant pain‐related observational items had been identified. However, existing scales include pain‐ irrelevant items or items of poor psychometric quality. Therefore, the main task was to reduce and refine the number of items. Thus, rather than starting from scratch, we Funding information The initiative was funded by the EU‐COST (action TD 1005). especially dementia” aimed to do this by selecting items out of existing observational scales and critically re‐assessing their suitability to detect pain in dementia. This paper reports on the final phase of this collaborative task. Methods: Items from existing observational pain scales were tested for “frequency of occurrence (item difficulty),” “reliability” and “validity.” This psychometric testing was carried out in eight countries, in different healthcare settings, and included clinical as well as experimental pain conditions. Results: Across all studies, 587 persons with dementia, 27 individuals with intellectual disability, 12 Huntington's disease patients and 59 cognitively healthy controls were observed during rest and movement situations or while receiving experimental pressure pain, respectively. The psychometric outcomes for each item across the different studies were evaluated within an international and multidisciplinary team of experts and led a final selection of 15 items (5x facial expressions, 5x body movements, 5x vocalizations). Conclusions: The final list of 15 observational items have demonstrated psychometric quality and clinical usefulness both in their former scales and in the present international evaluation; accordingly, they qualified twice to form a new internationally agreed‐on meta‐tool for Pain Assessment in Impaired Cognition, the PAIC‐15 scale. Significance: Using a meta‐tool approach by building on previous observational pain assessment scales and putting the items of these scales through rigorous empirical testing (using experimental as well as clinical pain studies in several European countries), we were able to identify the best items for pain assessment in individuals with impaired cognition. These selected items form the novel PAIC15 scale (pain assessment in impaired cognition, 15 items).

Background: Norway instituted a Coordination Reform in 2012 aimed at maximizing time at home by providing in-home care through community services. Dying in a hospital can be highly stressful for patients and families. Persons with dementia are particularly vulnerable to negative outcomes in hospital. This study aims to describe changes in the proportion of older adults with and without dementia dying in nursing homes, home, hospital and other locations over an 11-year period covering the reform. Methods and findings: This is a repeated cross-sectional, population-level study using mortality data from the Norwegian Cause of Death Registry hosted by the Norwegian Institute of Public Health. Participants were Norwegian older adults 65 years or older with and without dementia who died from 2006 to 2017. The policy intervention was the 2012 Coordination Reform that increased care infrastructure into communities. The primary outcome was location of death listed as a nursing home, home, hospital or other location. The trend in the proportion of location of death, before and after the reform was estimated using an interrupted time-series analysis. All analyses were adjusted for sex and seasonality. Of the 417,862 older adult decedents, 61,940 (14.8%) had dementia identified on their death certificate. Nursing home deaths increased over time while hospital deaths decreased for the total population (adjusted Relative Risk Ratio (aRRR) 0.87, 95% CI 0.82–0.92) and persons with dementia (aRRR: 0.93, 95%CI 0.91–0.96) after reform implementation. Conclusion: This study provides evidence that the 2012 Coordination Reform was associated with decreased older adults dying in hospital and increased nursing home death; however, the number of people dying at home did not change. publishedVersion

Background In nursing homes (NH) the prevalence of dementia ranges from 50 to 84% and most residents have extensive physical-performance impairments. However, from time of admission, development of physical performance in NH residents with dementia remains unexplored. Aims To explore the overall trend in physical performance, associated characteristics, and groups following distinct trajectories from time of admission, in NH residents with dementia. Methods We followed newly admitted NH residents diagnosed with dementia (N = 583) from 47 NHs across Norway for 3 years. Individual assessments were conducted biannually, and main outcome measure was the Short Physical Performance Battery (SPPB). Facility-level characteristics included unit size, staff-to-resident ratio, and quality of the physical environment (Special Care Unit Environmental Quality Scale, SCUEQS). Results From time of admission, NH residents with dementia showed a significant overall decline in physical performance. Further, we identified three distinct trajectory groups with significantly different baseline physical-performance status (“good,” “moderate,” and “poor”), differences between groups maintained and all declined across time. Younger age, good general medical health, less-severe dementia, and less musculoskeletal pain were associated with both an average higher overall trend and better baseline group-belonging. Additionally, less apathy and more psychosis were associated with a higher overall trend, and agitation was associated with poorer baseline group-belonging. Conclusions To prevent excessive decline in physical performance in this population, NH clinicians should focus efforts specifically on assessment of physical performance at admission and on identification and management of musculoskeletal pain and neuropsychiatric symptoms.

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients.