Gamle – og pasienter med demens – Omsorg ved livets slutt

I livets siste leveår vil det store flertall gamle og pasienter med demens trenge kompetent omsorg, pleie, vurdering og behandling, med respekt for deres livsprosjekt og verdighet. Alle vil i de siste måneder, uker, dager og timer før de dør trenge kompetent omsorg ved livets slutt (palliative care), uavhengig av diagnose eller oppholdssted – til alle døgnets tider. Artikkelen drøfter utfordringer og muligheter, grunnlaget for nødvendig kompetanse: etikk, forberedende samtaler, organisering og samhandling

Staff distress improves by treating pain in nursing home patients with dementia: results from a cluster-randomized controlled trial

Context. Most people with dementia develop neuropsychiatric symptoms (NPSs), which are distressing for their carers. Untreated pain may increase the prevalence and severity of NPSs and thereby staff burden. Objectives. We investigated the association between NPSs and the impact of individual pain treatment on distress in nursing home staff. Methods. Nursing home (NH) units were cluster-randomized to an intervention group (33 NH units; n ¼ 175) or control group (27 NH units; n ¼ 177). Patients in the intervention group received individual pain treatment for eight weeks, followed by a four-week washout period; control groups received care as usual. Staff informants (n ¼ 138) used the Neuropsychiatric InventoryeNH version (including caregiver distress) as primary outcome to assess their own distress. Other outcomes were pain (Mobilization-Observation-Behavior-Intensity-Dementia-2 Pain Scale) and cognitive functioning (MinieMental State Examination). Results. Using hierarchical regression analysis, all NPS items at baseline were associated with staff distress (P < 0.01) apart from euphoria; agitation had the largest contribution (b ¼ 0.24). Using mixed models, we found significantly lower staff distress in the intervention group compared to the control group. Moreover, we also found significantly reduced distress in the control group, and there were still effects in both groups throughout the washout period. Conclusion. Individual pain treatment reduced staff distress in the intervention group compared to control group especially in regard to agitation-related symptoms and apathy. Furthermore, our results indicated a multifactorial model of staff distress, in which enhanced knowledge and understanding of NPSs and pain in people with advanced dementia may play an important role.publishedVersio

Predictive Agent-Based Crowd Model Design Using Decentralized Control Systems

As a complex system, crowd dynamics emerge bottom-up from the local interactions between pedestrians as component subsystems. This article proposes a predictive agent-based crowd simulation model to analyze the outcomes of emergency evacuation scenarios taking into account collisions between pedestrians, smoke, fire sprinklers, and exit indicators. The crowd model is based on a decentralized control system structure, where each pedestrian agent is governed through a deliberative-reactive control architecture. The simulation model for evacuation includes a routing-based control system for dynamic-guided evacuation. A design case illustrates the modeling process. Results show that the crowd simulation model based on agent autonomy and local interactions is able to generate higher level crowd dynamics through emergence.publishedVersio

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home

In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women’s dignity included having a sense of control, making one’s own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.publishedVersio

“We live as good a life as we can, in the situation we’re in” – the significance of the home as perceived by persons with dementia

Background: The coming years will see more persons with dementia living longer at home. However, “the home” is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home. Methods: Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on “The home” were chosen as a framework for the theoretical interpretation of the findings. Results: The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point. Conclusion: The study suggests that the participants’ home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.publishedVersio

Pain in dementia

The ageing revolution is changing the composition of our society with more people becoming very old with higher risks for developing both pain and dementia. Pain is normally signaled by verbal communication, which becomes more and more deteriorated in people with dementia. Thus, these individuals unnecessarily suffer from manageable but unrecognized pain. Pain assessment in patients with dementia is a challenging endeavor, with scientific advancements quickly developing. Pain assessment tools and protocols (mainly observational scales) have been incorporated into national and international guidelines of pain assessment in aged individuals. To effectively assess pain, interdisciplinary collaboration (nurses, physicians, psychologists, computer scientists, and engineers) is essential. Pain management in this vulnerable population is also preferably done in an interdisciplinary setting. Nonpharmacological management programs have been predominantly tested in younger populations without dementia. However, many of them are relatively safe, have proven their efficacy, and therefore deserve a first place in pain management programs. Paracetamol is a relatively safe and effective first-choice analgesic. There are many safety issues regarding nonsteroidal anti-inflammatory drugs, opioids, and adjuvant analgesics in dementia patients. It is therefore recommended to monitor both pain and potential side effects regularly. More research is necessary to provide better guidance for pain management in dementia.publishedVersio

Healthcare professionals' perceptions of dignity-preserving care for older home-dwelling women with incurable cancer in Norway

Municipal end-of-life care for older home-dwelling patients with cancer is a complex matter requiring healthcare professionals (HCPs) to recognize gender differences in a social, historical and organizational context. A qualitative approach was chosen to explore and identify HCPs value-based principles and organizational conditions promoting dignity-preserving care practice for these women. HCPs recognized the importance of sheltering the women’s identity, their sense of being home and acknowledged their personal preferences as value-based principles, whereas creating a flexible culture of care, establishing a functional professional collaboration and developing individualized plans of care, were crucial organizational conditions influencing the practice of dignity-preserving care.publishedVersio

Associations between home deaths and end-of-life nursing care trajectories for community-dwelling people: a population-based registry study

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.publishedVersio

Managing Pain and Psychosis Symptoms in Nursing Home Patients: Results from a Cluster-Randomized Controlled Trial (COSMOS)

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 <6 months were excluded. Measures Pain was measured using the Mobilization-Observation-Behavior-Intensity-Dementia Pain Scale. Psychosis symptoms were measured using the Neuropsychiatric Inventory–NH version. Measurements were performed at baseline, and months 4 and 9. Results Multilevel Mixed-Effect statistical analysis found that psychosis symptoms as a group (odds ratio [OR] 2.03, P = .009), and delusion (OR 2.12, P = .007) were associated with pain over time. No significant intervention effect on psychosis symptoms was observed. Compared with the control group, people with dementia in the intervention group experienced less musculoskeletal pain (β: −0.47, P = .047). Analgesic prescription was not affected by the intervention. Conclusion and Implications Pain is associated with psychosis symptoms, and pain assessment should be done when making treatment decisions on psychosis symptoms in NH patients. The COSMOS intervention improved musculoskeletal pain in people with dementia, but not psychosis symptoms, and there is need for further studies on treatment of psychosis symptoms in NH patients.publishedVersio

Sensing Technology to Monitor Behavioral and Psychological Symptoms and to Assess Treatment Response in People With Dementia. A Systematic Review

Background: The prevalence of dementia is expected to rapidly increase in the next decades, warranting innovative solutions improving diagnostics, monitoring and resource utilization to facilitate smart housing and living in the nursing home. This systematic review presents a synthesis of research on sensing technology to assess behavioral and psychological symptoms and to monitor treatment response in people with dementia. Methods: The literature search included medical peer-reviewed English language publications indexed in Embase, Medline, Cochrane library and Web of Sciences, published up to the 5th of April 2019. Keywords included MESH terms and phrases synonymous with “dementia”, “sensor”, “patient”, “monitoring”, “behavior”, and “therapy”. Studies applying both cross sectional and prospective designs, either as randomized controlled trials, cohort studies, and case-control studies were included. The study was registered in PROSPERO 3rd of May 2019. Results: A total of 1,337 potential publications were identified in the search, of which 34 were included in this review after the systematic exclusion process. Studies were classified according to the type of technology used, as (1) wearable sensors, (2) non-wearable motion sensor technologies, and (3) assistive technologies/smart home technologies. Half of the studies investigated how temporarily dense data on motion can be utilized as a proxy for behavior, indicating high validity of using motion data to monitor behavior such as sleep disturbances, agitation and wandering. Further, up to half of the studies represented proof of concept, acceptability and/or feasibility testing. Overall, the technology was regarded as non-intrusive and well accepted. Conclusions: Targeted clinical application of specific technologies is poised to revolutionize precision care in dementia as these technologies may be used both by patients and caregivers, and at a systems level to provide safe and effective care. To highlight awareness of legal regulations, data risk assessment, and patient and public involvement, we propose a necessary framework for sustainable ethical innovation in healthcare technology. The success of this field will depend on interdisciplinary cooperation and the advance in sustainable ethic innovation.publishedVersio