Advance Care Planning in Nursing Homes – Improving the Communication Among Patient, Family, and Staff: Results From a Cluster Randomized Controlled Trial (COSMOS)

Introduction: The majority of nursing home (NH) patients suffer from complex diseases, including dementia. This makes advance care planning (ACP) particularly important.Objectives: The aim was to investigate the effect of an ACP intervention on communication among NH staff, patient, and family. We further investigated whether the intervention affected nursing staff distress.Methods: The ACP intervention was a part of the 4-month cluster randomized controlled COSMOS trial with a 9-month follow-up. Norwegian NH units (n = 72), with 765 patients were invited, and eligible units were cluster randomized to usual care or the intervention group. The ACP intervention consisted of an education program targeting all NH staff (nurses and physicians) and managers. Implementation was supported by a train-the-trainer approach, with regular phone calls from the researchers. The effect of the intervention was assessed by a data collection form and questionnaires. Nursing staff distress was assessed by the Neuropsychiatric Inventory -Nursing Home version.Results: Five hundred and forty five patients from 67 NH units were included and randomized to the intervention (N = 297; 36 units) and control group (N = 248; 31 units). Organized meetings between the family, patient, and nurses were conducted more frequently in the intervention compared to the control group at month 4 (OR = 3.9, 95% CI = 1.6 to 9.4, p = 0.002). Monthly contact between family and nurses was also more frequent in the intervention group (OR = 6.5, 95% CI = 1.6 to 3.5, p = 0.010). Nurses and families were more satisfied with their communication in the intervention compared to the control group. Staff distress was reduced in the intervention group at month 4 (B = -1.8, 95% CI = -3.1 to -0.4, p = 0.012). The intervention effect at month 4 did not persist during follow-up at month 9.Conclusion: Compared to control, the ACP intervention improved the communication, and family and staff satisfaction as well as reduced staff distress. However, during the follow-up period these positive effects were not persistent. Indicating the necessity for ongoing staff support regarding ACP.Trial Registration:www.ClinicalTrials.gov (NCT02238652)

Access to, use of, and experiences with social alarms in home-living people with dementia: results from the [email protected] trial

Background: Social alarms are considered an appropriate technology to ensure the safety and independence of older adults, but limited research has been conducted on their actual use. We, therefore, explored the access, experiences, and use of social alarms among home-bound people with dementia and their informal caregivers (dyads). Methods: From May 2019 to October 2021, the [email protected] mixed-method intervention trial collected data from semi-quantitative questionnaires and qualitative interviews conducted among home-dwelling people with dementia and their informal caregivers in Norway. The study focused on data from the final assessment at 24 months. Results: A total of 278 dyads were included, and 82 participants reached the final assessment. The mean age of the patients was 83 years; 74.6% were female; 50% lived alone; and 58% had their child as a caregiver. A total of 62.2% of subjects had access to a social alarm. Caregivers were more likely to answer that the device was not in use (23.6%) compared to patients (14%). Qualitative data revealed that approximately 50% of the patients were not aware of having such an alarm. Regression analyses assessed that access to a social alarm was associated with increasing age (86–97 years, p = 0.005) and living alone (p < 0.001). Compared to their caregivers, people with dementia were more likely to answer that the device gave them a false sense of security (28% vs. 9.9%), while caregivers were more likely to answer that the social alarm was of no value (31.4% vs.14.0%). The number of social alarms installed increased from 39.5% at baseline to 68% at 24 months. The frequency of unused social alarms increased from 12 months (17.7%) to 24 months (23.5%), and patients were less likely to feel safe during this period (60.8% vs. 70%). Conclusion: Depending on their living situation, patients and family members experienced the installed social alarm differently. There is a gap between access to and the use of social alarms. The results indicate an urgent need for better routines in municipalities with regard to the provision and follow-up of existing social alarms. To meet the users’ changing needs and abilities, passive monitoring may help them adapt to declining cognitive abilities and increase their safety.publishedVersio

Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial

Objective To determine whether a systematic approach to the treatment of pain can reduce agitation in people with moderate to severe dementia living in nursing homes

Pain management in patients with dementia

There are an estimated 35 million people with dementia across the world, of whom 50% experience regular pain. Despite this, current assessment and treatment of pain in this patient group are inadequate. In addition to the discomfort and distress caused by pain, it is frequently the underlying cause of behavioral symptoms, which can lead to inappropriate treatment with antipsychotic medications. Pain also contributes to further complications in treatment and care. This review explores four key perspectives of pain management in dementia and makes recommendations for practice and research. The first perspective discussed is the considerable uncertainty within the literature on the impact of dementia neuropathology on pain perception and processing in Alzheimer’s disease and other dementias, where white matter lesions and brain atrophy appear to influence the neurobiology of pain. The second perspective considers the assessment of pain in dementia. This is challenging, particularly because of the limited capacity of self-report by these individuals, which means that assessment relies in large part on observational methods. A number of tools are available but the psychometric quality and clinical utility of these are uncertain. The evidence for efficient treatment (the third perspective) with analgesics is also limited, with few statistically well-powered trials. The most promising evidence supports the use of stepped treatment approaches, and indicates the benefit of pain and behavioral interventions on both these important symptoms. The fourth perspective debates further difficulties in pain management due to the lack of sufficient training and education for health care professionals at all levels, where evidence-based guidance is urgently needed. To address the current inadequate management of pain in dementia, a comprehensive approach is needed. This would include an accurate, validated assessment tool that is sensitive to different types of pain and therapeutic effects, supported by better training and support for care staff across all settings

Description of an advance care planning intervention in nursing homes: outcomes of the process evaluation

Abstract Background Advance Care Planning (ACP) is the repeated communication and decision-making process between the patient, family, and healthcare professionals. This study describes an ACP intervention in nursing homes and evaluates the outcomes of the implementation process. Methods The ACP intervention was part of a 4-month complex, cluster randomized controlled trial (COSMOS). 37 Norwegian nursing homes with 72 units (1 cluster = 1 unit) and 765 patients were invited to participate and eligible units were randomised to the intervention group or control. Nursing home staff in the intervention group was offered a standardized education programme to learn early and repeated communication with patients and families and to implement ACP in their units. We used a train-the-trainer approach to educate staff in the units, supported by regular telephone calls and a midway seminar after two months. Individual patient logs consisting of different communication deliverables were used to evaluate the implementation process. Supported by Qualitative Content Analyses, we identified facilitators and barriers of the ACP implementation based on feedback during midway seminars and individual patient logs. Results The ACP intervention was conducted in 36 NH units (n = 297); 105 healthcare providers participated at the education seminar prior to the study, and 3–4 employees from each unit participated in the midway seminar. NH staff reported the educational material relevant for the implementation strategy. The patient logs showed that ACP was successfully implemented in 62% (n = 183) of the patients using our predefined implementation criteria. The staff emphasized the clear communication of the relevance of ACP addressed to leaders and staff as important facilitators, along with the clearly defined routines, roles and responsibilities. Identified barriers included lack of competence, perceived lack of time, and conflicting culture and staff opinions. Conclusion Monthly communication with the family was the most frequently conducted communication, and the predefined criteria of successfully implemented ACP were largely achieved. Nursing home routines and engagement of leaders and staff were crucial facilitators, whereas lack of time and competence reduced the implementation success. Trial registration The COSMOS-trial was registered in the ClinicalTrials.gov (NCT02238652) July 7th, 201

Are chronic pain patients with dementia being undermedicated?

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.publishedVersio