PReventing and Approaching Crises for frail community-dwelling patients Through Innovative Care (PRACTIC): protocol for an effectiveness cluster randomised controlled trial.

BACKGROUND: Demographic changes, with an increasing number and proportion of older people with multimorbidity and frailty, will put more pressure on home care services in municipalities. Frail multimorbid people receiving home care services are at high risk of developing crises, defined as critical challenges and symptoms, which demand immediate and new actions. The crises often result in adverse events, coercive measures, and acute institutionalisation. There is a lack of evidence-based interventions to prevent and resolve crises in community settings. METHODS: This is a participatory action research design (PAR) in a 6-month cluster randomised controlled trial (RCT). The trial will be conducted in 30 municipalities, including 150 frail community-dwelling participants receiving home care services judged by the services to be at risk of developing crisis. Each municipality (cluster) will be randomised to receive either the locally adapted TIME intervention (the intervention group) or care as usual (the control group). The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) is a manual-based, multicomponent programme that includes a rigorous assessment of the crisis, one or more interdisciplinary case conferences, and the testing and evaluation of customised treatment measures. PAR in combination with an RCT will enhance adaptations of the intervention to the local context and needs. The primary outcome is as follows: difference in change between the intervention and control groups in individual goal achievement to resolve or reduce the challenges of the crises between baseline and 3 months using the PRACTIC Goal Setting Interview (PGSI). Among the secondary outcomes are the difference in change in the PGSI scale at 6 months and in neuropsychiatric symptoms (NPSs), quality of life, distress perceived by professional carers and next of kin, and institutionalisation at 3 and 6 months. DISCUSSION: Through customised interventions that involve patients, the next of kin, the social context, and health care services, crises may be prevented and resolved. The PReventing and Approaching Crises for frail community-dwelling patients Through Innovative Care (PRACTIC) study will enhance innovation for health professionals, management, and users in the development of new knowledge and a new adapted approach towards crises. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05651659. Registered 15.12.22.

Body mass index in nursing home residents during the first year after admission.

BACKGROUND: Malnutrition - comprising both undernutrition and overweight - has to be addressed in the medical follow-up of older adults due to the negative consequences for the functional state and general health. Still, little is known about the nutritional state of nursing home (NH) residents, especially with respect to weight gain or weight loss after NH admission. Therefore, this study aims to evaluate changes in the body mass index (BMI) during the first year following NH admission, and to explore demographic and clinical characteristics related to BMI changes. METHODS: Data from two prospective studies that recruited participants at NH admission were combined. Demographic and clinical characteristics including the BMI were assessed at baseline and after one year. A linear regression model was estimated to explore the impact of demographic and clinical characteristics on the change in BMI. RESULTS: The study cohort consisted of 1,044 participants with a mean age of 84.3 years (SD7.6) at baseline; 64.2% were female. At baseline, 33% of the NH residents had severe to moderate undernutrition, while 10% were obese. During the first year of their NH stay, residents with severe to moderate undernutrition had an average increase in BMI of 1.3 kg/m2 (SD 2.2; p < 0.001), while weight changes were either very small or not significant in the other BMI groups. Characteristics related to weight gain were younger age and less agitation. CONCLUSION: Malnutrition is a common health challenge at NH admission, with one third of NH residents being moderately to severely underweight and 10% being obese. However, during the first year of NH stay, there was a favourable development for underweight NH residents, as they increased their BMI, and 43.6% changed to a higher weight classification, while we observed no changes in the BMI in residents with obesity. As NH residents are in the last phase of their lives, interventions to prevent malnutrition or overweight should be initiated while still home-dwelling, and then continued in the nursing homes.

Cause and place of death in Norwegian nursing home residents.

BACKGROUND: Nursing home (NH) residents are in their last phase of life, and two aims of the NH's medical care in Norway is to prevent unnecessary hospital admissions that would not benefit the resident and to facilitate a peaceful death in familiar surroundings when the time comes. However, little is known about the share of residents dying in NHs and the causes of death. We therefore evaluated the cause and place of death in a cohort of NH residents followed from the time of NH admission until death. METHODS: NH residents were followed from admission to the NH and over the entire course of their NH stay. Demographic and clinical data were collected. Cause and place of death were retrieved from the Norwegian Cause of Death Registry. RESULTS: Of 1283 residents, 6.2% died in hospital and 91.2% in a NH. Those who died in hospitals were more often male, died sooner after NH admission, had a less severe degree of dementia and had poorer general health. Dementia was the most common underlying cause of death, followed by cardiovascular disease. CONCLUSIONS: Dementia is one of the main causes of death in NH residents. In addition, our findings indicate a low number of inappropriate referrals to hospital during the last stage of life. However, further research should explore whether the terminal phase of NH residents is formed in accordance with their preferences and whether appropriate palliative care is offered.

The Special Care Unit for People with Behavioral and Psychological Symptoms of Dementia (SCU- B) in the Context of the Project "RECage-Respectful Caring for Agitated Elderly": A Qualitative Study.

BACKGROUND: Dementia is a priority for global public health. The management of behavioral and psychological symptoms of dementia (BPSD) is one of the highest ongoing challenges and needs new approaches. The special care unit for people with dementia and BPSD (SCU-B) is viewed in this context as a further medical intervention. AIM: this study aims to explore SCU-B units in order to describe their main characteristics in relation to different implementation contexts, identify the characteristics of their replicability, and examine the social innovation elements promoted by SCU-B units. METHOD: This qualitative study is based on focus groups (FGs) and interviews involving nine international centers. Five of the centers have a memory clinic unit and SCU-B, compared with six that only have a memory clinic unit. A total number of 18 FGs were held, which altogether involved 164 participants. All data were transcribed verbatim and analyzed by means of a content analysis and a SWOT (strengths, weaknesses, opportunities, and threats) analysis. RESULTS: The qualitative analysis offers a vision of the SCU-B model as an innovative care unit for BPSD, promoting social innovation in the long-term care (LTC) sector. This system mainly targets people with dementia and BPSD and their informal caregivers but encourages collaboration between dementia care stakeholders at the micro and meso levels. CONCLUSIONS: Specific characteristics of the country's LTC systems and the organization of specialized units are determinants for the success of the SCU-B experience. The replicability of the entire SCU-B model was considered low; however, the implementation of single elements composing the SCU-B model may foster innovation. This study provides relevant suggestions on how to implement the SCU-B unit and innovative solutions for dementia care.

Mortality in nursing home residents stratified according to subtype of dementia: a longitudinal study over three years.

BACKGROUND: There are several subtypes of dementia caused by different pathophysiology and with different clinical characteristics. Irrespective subtype, the disease is progressive, eventually leading to the need for care and supervision on a 24/7 basis, often provided in nursing homes (NH). The progression rate and course of the disease might vary according to subtype. The aim of this study was to explore whether the mortality rate for NH residents varied according to the subtype of dementia. METHODS: NH residents were followed from admission to NH over a period of 36 months or until death with annual follow-up examinations. Demographic and clinical data were collected. The diagnosis of dementia and its subtype at baseline (BL) were set according to international accepted criteria. Kaplan-Meier analysis was performed to estimate median survival time. A Cox regression model was estimated to assess the impact of dementia diagnosis and demographic and clinical variables on mortality. RESULTS: A total of 1349 participants were included. When compared to persons with Alzheimer's disease (AD), persons with frontotemporal dementia (FTD) and dementia with Lewy bodies or Parkinson's disease dementia (DLB/PDD) were younger and had more neuropsychiatric symptoms. Median survival for the total sample was 2.3 years (95% confidence interval: 2.2-2.5). When compared to persons with AD, having no dementia or unspecified dementia was associated with higher mortality, while we found similar mortality in other subtypes of dementia. Higher age, male gender, poorer general health, higher dependency in activities of daily living, and more affective symptoms were associated with higher mortality. CONCLUSION: Mortality did not differ across the subtypes of dementia, except in persons with unspecified dementia or without dementia, where we found a higher mortality. With a median survival of 2.3 years, NH residents are in the last stage of their lives and care and medical follow-up should focus on a palliative approach. However, identifying the subtype of dementia might help carers to better understand and address neuropsychiatric symptoms and to customize medical treatment.

React and act: a qualitative study of how nursing home leaders follow up on staff-to-resident abuse.

BACKGROUND: Elder abuse in nursing homes is a complex multifactorial problem and entails various associations across personal, social, and organisational factors. One way leaders can prevent abuse and promote quality and safety for residents is to follow up on any problems that may arise in clinical practice in a way that facilitates learning. How nursing home leaders follow up and what they follow up on might reflect their perceptions of abuse, its causal factors, and the prevention strategies used in the nursing home. The aim of this study was to explore how nursing home leaders follow up on reports and information regarding staff-to-resident abuse. METHODS: A qualitative explorative design was used. The sample comprised 43 participants from two levels of nursing home leadership representing six municipalities and 21 nursing homes in Norway. Focus group interviews were conducted with 28 care managers, and individual interviews took place with 15 nursing home directors. The constant comparative method was used for the analyses. RESULTS: Nursing home leaders followed up incidents of staff-to-resident abuse on three different levels as follows: 1) on an individual level, leaders performed investigations and meetings, guidance, supervision, and occasionally relocated staff members; 2) on a group level, feedback, openness, and reflection for shared understanding were strategies leaders used; and 3) on an organisational level, the main solutions were to adjust to available resources, training, and education. We found that leaders had difficulties defining harm and a perceived lack of power to follow up on all levels. In addition, they did not have adequate tools for evaluating the effect of the measures that were taken. CONCLUSIONS: Nursing home leaders need to be clear about how they should follow up incidents of elder abuse on different levels in the organisation and about their role in preventing elder abuse. Evaluation tools that facilitate systematic organisational learning are needed. Nursing homes must operate as open, blame-free cultures that acknowledge that incidents of elder abuse in patient care arise not only from the actions of individuals but also from the complex everyday life of which they are a part and in which they operate.

Nursing home leaders' perception of factors influencing the reporting of elder abuse and neglect: a qualitative study.

PURPOSE: The purpose of this study is to explore the factors that influence the reporting of adverse events related to elder abuse and neglect in nursing homes from nursing home leaders' perspectives. Good leadership requires in-depth knowledge of the care and service provided and the ability to identify and address problems that can arise in clinical practice. DESIGN/METHODOLOGY/APPROACH: A qualitative explorative design with data triangulation was used. The sample consisted of 43 participants from two levels of nursing home leadership, representing six municipalities and 21 nursing homes in Norway. Focus group interviews were undertaken with 28 ward leaders and individual interviews with 15 nursing home directors. The constant comparative method was used for the analyses. FINDINGS: Both ward leaders and nursing home directors described formal and informal ways of obtaining information related to elder abuse and neglect. There were differences between their perceptions of the feasibility of obtaining formal reports about abuse in the nursing home. Three main categories of influencing factors emerged: (1) organisation structural factors, (2) cultural factors and (3) abuse severity factors. A main finding is that in its present form, the Norwegian adverse event reporting system is not designed to detect abuse and neglect. ORIGINALITY/VALUE: This paper provides an in-depth understanding of patient safety and factors related to reporting elder abuse in nursing homes in Norway.

Elder abuse and neglect: an overlooked patient safety issue. A focus group study of nursing home leaders' perceptions of elder abuse and neglect.

BACKGROUND: The definition and understanding of elder abuse and neglect in nursing homes can vary in different jurisdictions as well as among health care staff, researchers, family members and residents themselves. Different understandings of what constitutes abuse and its severity make it difficult to compare findings in the literature on elder abuse in nursing homes and complicate identification, reporting, and managing the problem. Knowledge about nursing home leaders' perceptions of elder abuse and neglect is of particular interest since their understanding of the phenomenon will affect what they signal to staff as important to report and how they investigate adverse events to ensure residents' safety. The aim of the study was to explore nursing home leaders' perceptions of elder abuse and neglect. METHODS: A qualitative exploratory study with six focus group interviews with 28 nursing home leaders in the role of care managers was conducted. Nursing home leaders' perceptions of different types of abuse within different situations were explored. The constant comparative method was used to analyse the data. RESULTS: The results of this study indicate that elder abuse and neglect are an overlooked patient safety issue. Three analytical categories emerged from the analyses: 1) Abuse from co-residents: 'A normal part of nursing home life'; resident-to-resident aggression appeared to be so commonplace that care leaders perceived it as normal and had no strategy for handling it; 2) Abuse from relatives: 'A private affair'; relatives with abusive behaviour visiting nursing homes residents was described as difficult and something that should be kept between the resident and the relatives; 3) Abuse from direct-care staff: 'An unthinkable event'; staff-to-resident abuse was considered to be difficult to talk about and viewed as not being in accordance with the leaders' trust in their employees. CONCLUSIONS: Findings in the present study show that care managers lack awareness of elder abuse and neglect, and that elder abuse is an overlooked patient safety issue. The consequence is that nursing home residents are at risk of being harmed and distressed. Care managers lack knowledge and strategies to identify and adequately manage abuse and neglect in nursing homes.

TIME to reduce agitation in persons with dementia in nursing homes. A process evaluation of a complex intervention.

BACKGROUND: The Targeted Intervention Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) has recently in a three-month cluster randomised controlled trial demonstrated reduction in agitation in nursing home residents with dementia. To ease replication and future implementation, and to clarify possible causal mechanisms, we performed a process evaluation of the intervention based on the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance). METHODS: An exploratory and a quasi-experimental design with mixed methods were used. The RE-AIM dimensions were explored by questionnaires to 807 staff members and 46 leading ward nurses in both the intervention nursing homes (INH) and the control nursing homes (CNH), before the start of the trial (baseline), and six and 12 months later. These questionnaires assessed data regarding the reach, effectiveness (staff level) and adoption dimensions. To assess implementation, we used a checklist for performance of the main components in TIME and analysed the minutes from 84 case conferences in the INH. To explore adoption and maintenance, five focus group interviews with 32 participants from the staff in the INH were conducted three to 6 months after the end of the trial. RESULTS: Reach: On average 61% (SD 22) of the staff in each ward in the INH attended the training sessions. Effectiveness at staff level: There were no between-group differences throughout the study period for attitudes towards dementia, perceived competence or perception of mastery and social interaction. Adoption: 16 of the 17 INH completed the intervention. IMPLEMENTATION: 75% or more of the components of TIME were performed for 91% of the included residents. Maintenance: Most of the nursing homes used TIME three to 6 months after the end of the trial. An easy to grasp model and an engaged leadership facilitated the intervention and maintenance. CONCLUSIONS: A high degree of reach, adoption, implementation and maintenance contributed to the effectiveness of TIME at resident level. One other causal assumption of the effectiveness of TIME is the development in the staff of a new, shared and situated knowledge about each individual resident, not reflected by measurements in general knowledge and attitudes. TRIAL REGISTRATION: The trial was registered January 6, 2016 with ClinicalTrials.gov ( NCT02655003 ).

Experiences of nursing home staff using the targeted interdisciplinary model for evaluation and treatment of neuropsychiatric symptoms (TIME) - a qualitative study.

Background/Aims: Neuropsychiatric symptoms (NPS) in dementia pose great challenges for residents and staff in nursing homes. The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) has recently in a randomized controlled trial demonstrated reductions in NPS. We explored the participating staff's experiences with the model and how it meets the challenges when dealing with the complexity of NPS. Methods: Three to six months after the end of the intervention, we interviewed 32 of the caregivers, leaders, and physicians participating in the trial, in five focus groups. We used thematic content analysis. Results: The analysis yielded two main themes: (1) a systematic reflection method enhanced learning at work; (2) the structure of the approach helped staff to cope with NPS in residents with dementia. Conclusion: TIME shifts the way of learning for the staff from a traditional to a more innovative and reflection-based learning through a process of learning how to learn at work. The staff's experienced increased coping in their approach to complex problems. Our results emphasise the importance of a structured and biopsychosocial approach to NPS in clinical practice. Future research should explore models for integrating situated learning in daily routines in nursing homes.

The coping experiences of spouses of persons with dementia.

AIMS AND OBJECTIVES: To explore how spouses who are caregivers to persons with dementia experience everyday life 6-12 months after participation in the intervention condition in the Norwegian Cognitive Behavioural Therapy for Early Dementia (N-CORDIAL) study. BACKGROUND: There is no current medical curative treatment for cognitive impairment and dementia-associated conditions. These conditions will lead to an increased need for daily assistance and care, as well as greater stress for caregivers. The Norwegian CORDIAL Study is a manual-based randomised controlled trial based on the German CORDIAL study (cognitive rehabilitation and cognitive behavioural treatment for early dementia in Alzheimer's disease), consisting of cognitive rehabilitation, cognitive behavioural therapy and life review methods. DESIGN AND METHODS: A descriptive exploratory study with qualitative semi-structured in-depth interviews with six spouses of persons with dementia who had participated in the Norwegian CORDIAL study. The transcribed text was analysed by systematic text condensation. RESULT: The main theme identified, "An everyday search for meaning," referred to the stress experienced by the caregivers and their coping strategies in everyday life. CONCLUSION: The caregivers had gained increased awareness of coping strategies in everyday life 6-12 months after the intervention. Caregivers who experienced fewer neuropsychiatric symptoms in their spouses with dementia benefitted most from the intervention. RELEVANCE TO CLINICAL PRACTICE: The study is relevant to clinical practice as interventions focusing on how to improve coping strategies may reduce caregiver stress and contribute to postponement of nursing home placement.

TIME - Targeted interdisciplinary model for evaluation and treatment of neuropsychiatric symptoms: protocol for an effectiveness-implementation cluster randomized hybrid trial.

BACKGROUND: Nearly all persons with dementia will experience neuropsychiatric symptoms (NPS) during the course of their disease. Clinicians and researchers emphasize the need for an evidence-informed standardized approach to managing NPS that integrates pharmacological and nonpharmacological treatments for real-world implementation. The Targeted Interdisciplinary Model for Evaluation and Treatment of Neuropsychiatric Symptoms (TIME) represents such an approach and is a multicomponent intervention based on the theoretical framework of cognitive behavioural therapy. METHODS/DESIGN: The trial is a 3-month cluster randomized trial conducted in 30 nursing homes including 168 participants with dementia and a high level of agitation. Each nursing home defined as a cluster will be randomized to receive either the TIME intervention (the intervention group) or a brief education-only intervention regarding dementia and NPS (the control group). TIME is a manual-based, multicomponent programme that includes a rigorous assessment, one or more case conferences and the treatment and evaluation of NPS. Patient-level measurements are taken at baseline (prior to randomization) and 8 and 12 weeks later. The primary outcome measure is the change in agitation, as defined by the Neuropsychiatric Inventory-Nursing Home Version, at 8 weeks from baseline. Secondary outcome measures include change in agitation at 12 weeks from baseline, and change from baseline at 8 and 12 weeks in other NPS, quality of life, and the use of psychotropic and analgesic medications. Mixed methods will be used to follow, measure and explore the implementation process and the effect of the intervention at the individual staff level and the organization level. Combining measurements of clinical effectiveness and implementation outcomes define this trial as an effectiveness-implementation hybrid trial. DISCUSSION: Measuring the implementation and effect of complex interventions aimed at reducing NPS in nursing homes is challenging. In this study protocol, we describe a multicomponent program, TIME, and discuss how an effectiveness-implementation cluster randomized hybrid trial can meet these challenges. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT02655003 . Registered 6 January 2016.