Factors influencing interprofessional collaboration in general and during multidisciplinary team meetings in long-term care and geriatric rehabilitation: a qualitative study.

BACKGROUND: Interprofessional collaboration is essential to maintain high-quality care in long-term care and geriatric rehabilitation. However, little is known regarding perceived factors influencing interprofessional collaboration by people involved in care. This concerns both long-term care and geriatric rehabilitation. Moreover, knowledge of using patient outcome measures to enhance interprofessional collaboration during multidisciplinary team meetings is insufficient. This study examined the perceived facilitators of and barriers to interprofessional collaboration in general and during multidisciplinary team meetings, specifically according to healthcare professionals, patients, and informal caregivers. Differences between long-term care and geriatric rehabilitation were also investigated. Finally, it was examined which patient outcome measures were used in multidisciplinary team meetings. METHODS: A constructivist qualitative study using 10 focus groups and 18 semi-structured interviews with 14 patients, 13 informal caregivers,10 managers, and 22 healthcare professionals from eight Dutch long-term care and geriatric rehabilitation facilities. A combined inductive and deductive approach to a thematic analysis was performed. RESULTS: The perceived influencing factors of interprofessional collaboration were classified into two general themes: (1) 'Involvement of patient, informal caregiver, and healthcare professional', categorised into: 'participation of patients and informal caregivers', 'behaviour and attitude of team members', 'expectations of team members towards each other', and 'exchange of information, knowledge, and reciprocity in communication'; and (2) 'A systematic approach to providing care for older people', consisting of: 'coordination of team procedures', and 'coordination of organisational procedures'. Also, one theme for multidisciplinary team meetings was identified: 'Organised participation of patient, informal caregiver, and healthcare professional in multidisciplinary team meeting, categorised into: 'team procedures', 'working systematically', and 'participation in multidisciplinary team meetings. Standardised patient outcome measures were scarcely used in multidisciplinary team meetings. CONCLUSION: People involved in long-term care and geriatric rehabilitation indicated that, apart from working systematically, being involved in care and multidisciplinary team meetings are essential factors for interprofessional collaboration. These factors must be taken into consideration to provide valuable, high-quality care to older people residing in long-term care and geriatric. TRIAL REGISTRATION: Not applicable.

Noninvasive monitoring technologies to identify discomfort and distressing symptoms in persons with limited communication at the end of life: a scoping review.

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted. Manuscripts were included if they were written in English, Dutch, German, French, Japanese or Chinese, if the monitoring technology measured discomfort or distressing symptoms, was noninvasive, could be continuously administered for 4 hours and was potentially applicable for bed-ridden people. The screening was performed by two researchers independently. Information about the technology, its clinimetrics (validity, reliability, sensitivity, specificity, responsiveness), acceptability, and feasibility were extracted. RESULTS: Of the 3,414 identified manuscripts, 229 met the eligibility criteria. A variety of monitoring technologies were identified, including actigraphy, brain activity monitoring, electrocardiography, electrodermal activity monitoring, surface electromyography, incontinence sensors, multimodal systems, and noncontact monitoring systems. The main indicators of discomfort monitored by these technologies were sleep, level of consciousness, risk of pressure ulcers, urinary incontinence, agitation, and pain. For the end-of-life phase, brain activity monitors could be helpful and acceptable to monitor the level of consciousness during palliative sedation. However, no manuscripts have reported on the clinimetrics, feasibility, and acceptability of the other technologies for the end-of-life phase. CONCLUSIONS: Noninvasive monitoring technologies are available to measure common symptoms at the end of life. Future research should evaluate the quality of evidence provided by existing studies and investigate the feasibility, acceptability, and usefulness of these technologies in the end-of-life setting. Guidelines for studies on healthcare technologies should be better implemented and further developed.

Effect of stress-based interventions on the quality of life of people with an intellectual disability and their caregivers.

PURPOSE: People with intellectual disabilities often show challenging behaviour, which can manifest itself in self-harm or aggression towards others. Real-time monitoring of stress in clients with challenging behaviour can help caregivers to promptly deploy interventions to prevent escalations, ultimately to improve the quality of life of client and caregiver. This study aimed to assess the impact of real-time stress monitoring with HUME, and the subsequent interventions deployed by the care team, on stress levels and quality of life. MATERIALS AND METHODS: Real-time stress monitoring was used in 41 clients with intellectual disabilities in a long-term care setting over a period of six months. Stress levels were determined at the start and during the deployment of the stress monitoring system. The quality of life of the client and caregiver was measured with the Outcome Rating Scale at the start and at three months of use. RESULTS: The results showed that the HUME-based interventions resulted in a stress reduction. The perceived quality of life was higher after three months for both the clients and caregivers. Furthermore, interventions to provide proximity were found to be most effective in reducing stress and increasing the client's quality of life. CONCLUSIONS: The study demonstrates that real-time stress monitoring with the HUME and the following interventions were effective. There was less stress in clients with an intellectual disability and an increase in the perceived quality of life. Future larger and randomized controlled studies are needed to confirm these findings.

Assistive technology such as real-time stress monitoring enables caregivers to timely intervene and contributes to the reduction of challenging behaviour.Real-time stress monitoring contributes to the quality of life of clients and caregivers in healthcare.There is a reduction in the levels of stress of people with an intellectual disability by using stress-monitoring technology.

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review.

OBJECTIVES: This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain. DESIGN: Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline. DATA SOURCES: PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023. ELIGIBILITY CRITERIA: Studies reporting on family involvement in interventions for nursing home residents with dementia were included. DATA EXTRACTION AND SYNTHESIS: Two researchers independently extracted the data, followed by a content analysis. RESULTS: Of the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family's coping and skills). CONCLUSION: Best practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account. TRIAL REGISTRATION NUMBER: The protocol of the review was regisered at OSF; https://osf.io/twcfq.

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.

BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

Measuring Pain in Aphasia: Validity and Reliability of the PACSLAC-D.

BACKGROUND: Post-stroke pain in patients with an inability to communicate is not systematically assessed and therefore not sufficiently treated. This stresses the need to study pain assessment instruments that do not require good communication skills. AIM: To examine the validity and reliability of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D) in stroke patients with aphasia. METHOD: Sixty stroke patients (mean age 79.3 years, standard deviation [SD] 8.0), of whom 27 had aphasia were observed during rest, activities of daily living (ADL), and physiotherapy using the Pain Assessment Checklist for Seniors with Limited Ability to Communicate - Dutch version (PACSLAC-D). The observations were repeated after two weeks. To examine convergent validity, correlations between the PACSLAC-D, self-report pain scales, and the clinical judgment of a health care professional (pain present yes/no) were used. To examine discriminative validity, differences in pain were investigated between rest and ADL, in patients who use pain medication and those who do not, and in patients with and without aphasia. Internal consistency and test-retest reliability were assessed to determine reliability. RESULTS: Convergent validity failed to meet the acceptable threshold during rest but was adequate during ADL and physiotherapy. Discriminative validity was only adequate during ADL. The internal consistency was 0.33 during rest, 0.71 during ADL, and 0.65 during physiotherapy. Test-retest reliability varied from poor during rest (intraclass correlation coefficient [ICC] = 0.07; 95% confidence interval [CI]: -0.40-0.51) to excellent during physiotherapy (ICC = 0.95; 95% CI: 0.83-0.98). CONCLUSIONS: The PACSLAC-D captures pain in patients with aphasia who are unable to self-report, during ADL and physiotherapy, but may be less accurate during rest.

The Perceived Impact of the Namaste Care Family Program on Nursing Home Residents with Dementia, Staff, and Family Caregivers: A Qualitative Study.

Objective(s): To examine the perspectives of staff, and family caregivers (i.e., family, friends, and volunteers) on the impact of the Namaste Care Family program on all involved. The Namaste Care Family program is a structured program for people with advanced dementia based on a palliative care approach in which family caregivers provide daily sessions together with staff with the aim to increase residents' quality of life. Methods: In this descriptive qualitative study, we interviewed 12 family caregivers, and 31 staff members from 10 nursing homes. Data was analyzed thematically. Results: A perceived impact of the program was identified for the residents, staff, and family caregivers. For residents, this included well-being, more engagement, enhanced interactions, changes in energy level, and weight gain. The impact on family caregivers included a more positive view of people with dementia, changes in family visits, mixed feelings during sessions, and mixed changes in relations with all involved. For staff, this included diverse work experiences, shift to more person-centered care (more time and attention for residents, and more awareness), and developing relationships with residents and colleagues. Conclusions: The Namaste Care Family program was valued for its observed benefits and shift towards a person-centered care culture.

Priority measures to prevent infections and maintain residents' well-being during COVID-19 outbreaks in nursing homes: Consensus among staff and resident representatives determined in an online nominal group technique study.

Background: COVID-19 infection prevention measures can negatively impact nursing home residents' well-being. Society has been concerned about the imbalance between infection prevention and residents' well-being, and about nursing home residents' autonomy in COVID-19 policymaking. Objective: This study explores consensus among nursing home staff about which measures they found to be most important in contributing to preventing infections and to maintaining well-being of residents during COVID-19 outbreaks. In addition, this study explores the decision-making processes regarding COVID-19 measures and the involvement of residents or their representatives. Design: Mixed methods based on an online nominal group technique. Settings: Dutch nursing homes, June-November 2020. Participants: Managers, policy advisors, elderly care physicians, psychologists, a spiritual counselor, nurses, care assistants, and resident representatives (N = 35). Methods: Four panels from the viewpoint of infection prevention, and four panels from the viewpoint of well-being were performed with 3 to 7 participants per panel. Participants individually selected the measure they found most important, discussed these measures together in an online conversation, and rated the importance and urgency of these measures during COVID-19 outbreaks on a 5-point Likert scale. The measures that were rated as (very) important and (very) urgent by all members of that panel were defined as 'prioritized in consensus'. Panels also discussed the decision-making process regarding COVID-19 measures and the involvement of residents or their representatives. These conversations were transcribed verbatim and thematically coded using an inductive approach. Results: The infection prevention panels prioritized isolation measures; testing measures; testing and isolation combinations; use of personal protective equipment around (suspected) infected residents; and preparation for outbreaks by COVID-19 outbreak teams. The well-being panels prioritized cohort isolation, testing combined with cohort isolation and with isolation in residents' rooms, exceptions to visitor bans, maximum numbers of visitors, and registration and accompanying visitors to the residents' rooms. Resident representatives and staff were dissatisfied with their reduced involvement in policy making during the first months of the COVID-19 pandemic, although they understood that decisions had to be made quickly. Conclusions: Staff and resident representatives should be involved in COVID-19 policy making. According to them, priority COVID-19 measures should include: cohort isolation, testing and isolation combinations, use of personal protective equipment, crisis management by COVID-19 outbreak teams, and nursing home visit regulations and instruction of visitors. Combining these measures may be a first step towards packages of COVID-19 measures that better balance infection prevention and maintaining residents' well-being. Registration: N/A. Tweetable abstract: Priority COVID-19 nursing home measures are isolation, testing, testing and isolation combinations, PPE use, preparations by outbreak teams, and visit regulations @wilcoachterberg.

Evaluating the feasibility, experiences, facilitators of and barriers to carers and volunteers delivering Namaste Care to people with dementia in their own home: a qualitative interview study in the UK and the Netherlands.

OBJECTIVES: To evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers' experiences with the programme. DESIGN: Qualitative interview study with two phases: (1) preparation phase; (2) pilot phase. SETTING: Private residences of community-dwelling people with dementia in the UK and the Netherlands. PARTICIPANTS: Family carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews). INTERVENTION: Namaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions. RESULTS: Phase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7-10). CONCLUSION: We recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5-2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia. TRIAL REGISTRATION NUMBER: NL5570.

Distancing Measures and Challenges Discussed by COVID-19 Outbreak Teams of Dutch Nursing Homes: The COVID-19 MINUTES Study.

The most severe COVID-19 infections and highest mortality rates are seen among long-term care residents. To reduce the risk of infection, physical distancing is important. This study investigates what physical distancing measures were discussed by COVID-19 outbreak teams of Dutch long-term care organizations and what challenges they encountered. The COVID-19 MINUTES study is a qualitative multi-center study (n = 41) that collected minutes of COVID-19 outbreak teams from March 2020 to October 2021. Textual units about distancing measures were selected and analyzed using manifest content analysis for the first wave: early March-early May 2020; the intermediate period of 2020: mid-May-mid-September 2020; and the second wave: late September 2020-mid-June 2021. During all periods, COVID-19 outbreak teams often discussed distancing visitors from residents. Moreover, during the first wave they often discussed isolation measures, during the intermediate period they often discussed distancing staff and volunteers from residents, and during both the intermediate period and the second wave they often discussed distancing among residents. During all periods, less often admission measures were discussed. Challenges persisted and included unrest among and conflicts between visitors and staff, visitors violating measures, resident non-adherence to measures, and staffing issues. The discussed distancing measures and corresponding challenges may guide local long-term care and (inter)national policymakers during the further course of the COVID-19 pandemic, outbreaks of other infectious diseases, and long-term care innovations.

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review.

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning (ACP) for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In November 2020, seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed, and Cinahl). This search was updated in December 2021. The search strategy consisted of three tiers (related terms to "dementia," "communication" and "ACP"), intersected by using the Boolean term "AND," and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics (i.e., importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged clustered around two themes (i.e., communicating with people with dementia in ACP, and changes in communication due to dementia). This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences.

Activities for Residents of Dutch Nursing Homes during the COVID-19 Pandemic: A Qualitative Study.

To protect nursing home residents from getting infected with COVID-19, several measures have been imposed. The aim of this study was to describe the impact of these measures on activities for Dutch nursing home residents, the conditions under which the activities could take place, and the considerations when making decisions about the (dis)continuation of activities. The study consisted of the data of the qualitative MINUTES-study. Textual units derived from documentation of an outbreak team (OT) meetings on activities, well-being, informal caregivers, and volunteers from 39 long-term care organizations were re-analyzed using a content analysis. The results shows that OTs more often discussed restarting and continuing activities than stopping activities during the COVID-19 pandemic. There were differences between time periods, but activities never completely stopped according to the minutes. Activities were offered in an adapted way, often under certain conditions, such as organizing activities at other locations (e.g., outside), with limited group size, and following specific guidelines. The main focus of the considerations made were the ability to adhere to the guidelines, the well-being of residents, ensuring safety, and balancing benefits versus risks given vaccination availability and coverage. Overall, the study showed that organizing activities for nursing home residents despite COVID-19 measures is possible.

Maintaining meaningful activities for persons with dementia during transitions of care: A systematic review.

This systematic review summarizes the experiences with maintaining meaningful activities for persons with dementia during transitions of care, including related barriers and facilitators, and interventions and strategies. A systematic search was performed in eight databases. The methodological quality was assessed with the Mixed Methods Appraisal Tool. Four articles were included; one describing the transition from home to hospital and vice versa, and three describing the transition from home to nursing home. The narrative synthesis revealed a decrease of meaningful activities after transition. Facilitators of and barriers to maintaining meaningful activities during transitions were related to the person with dementia, informal caregivers, healthcare professionals and organization of care, as well as the environment. Interventions and strategies focused on continuously adjusting meaningful activities to the person. To conclude, maintaining meaningful activities during transitions is an under-researched area. Several recommendations are provided for healthcare professionals and organizations.

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study.

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

Interprofessional Collaboration in Long-Term Care and Rehabilitation: A Systematic Review.

OBJECTIVES: To examine facilitators of and barriers to interprofessional collaboration (IPC) in institutional long-term care (LTC) and geriatric rehabilitation (GR), and to provide an overview of instruments used to assess IPC in LTC and GR. DESIGN: Systematic integrative review. SETTING AND PARTICIPANTS: Institutional long-term care and geriatric rehabilitation. METHODS: We systematically searched relevant databases for articles using the terms interprofessional collaboration, interdisciplinary, long-term care, geriatric rehabilitation, elderly, facilitators, and barriers. We conducted a systematic integrative review following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis method. Papers containing empirical data about barriers to and facilitators of IPC in LTC and GR were included. The Mixed Method Appraisal Tool was used for quality assessment. Data were analyzed using qualitative thematical analysis. RESULTS: Three interdependent themes regarding facilitators of and barriers to IPC emerged: Team performance, Organizational conditions, and Sharing information. Eight instruments were used to assess IPC in LTC and none for GR. Limited descriptions and insufficient psychometric qualities of the instruments were reported. CONCLUSIONS AND IMPLICATIONS: To enhance IPC, it is necessary to stimulate facilitators and limit barriers on all 3 themes. Furthermore, a reliable, validated instrument to assess IPC in LTC and GR, based on a clear definition of IPC is needed. Successful IPC when caring for patients with multimorbidity in LTC and GR requires integration, understanding, and recognition of the interdependency from all persons involved, including patients and family caregivers.

[Pain and neurocognitive disorders: current state of the art and remaining challenges]. / Pijn en neurocognitieve stoornissen: stand van zaken en de weg nog te gaan.

The detection and treatment of pain is hampered by cognitive disorders. In this review we discuss the epidemiology of pain in cognitive disorders, and elaborate further on the current state of the art on pain in these populations. We will specifically highlight current gaps and recommendations for the future for the following knowledge domains: 1) Biology and neuropathology,  2) Assessment and evaluation, 3) Treatment and management , and 4) Contextual factors such as the organization and education.  We identify the following knowledge gaps: 1) (Biology): Do pain experience and pain expressions change in different types of cognitive disorders, and how? 2) (Assessment): How to recognize, evaluate and assess pain, in case the self-report of pain is no longer reliable? 3) (Treatment): Which treatment possibilities are effective? How can we organize this in an interdisciplinary way? And how to monitor this? How can we ensure proper implementation of pain assessment and treatment in clinical practice? Specifically with regard to non-pharmacological treatment, how can we communicate observations from different disciplines, family members and clinicians to improve the detection of pain as well as treatment monitoring/evaluation? 4) (Contextual): How can we increase knowledge and skills on pain in cognitive impairment within educational training?

COVID-19 management in nursing homes by outbreak teams (MINUTES) - study description and data characteristics: a qualitative study.

OBJECTIVES: Nursing homes are hit relatively hard by the COVID-19 pandemic. Dutch long-term care (LTC) organisations installed outbreak teams (OTs) to coordinate COVID-19 infection prevention and control. LTC organisations and relevant national policy organisations expressed the need to share experiences from these OTs that can be applied directly in COVID-19 policy. The aim of the 'COVID-19 management in nursing homes by outbreak teams' (MINUTES) study is to describe the challenges, responses and the impact of the COVID-19 pandemic in Dutch nursing homes. In this first article, we describe the MINUTES Study and present data characteristics. DESIGN: This large-scale multicentre study has a qualitative design using manifest content analysis. The participating organisations shared their OT minutes and other meeting documents on a weekly basis. Data from week 16 (April) to week 53 (December) 2020 included the first two waves of COVID-19. SETTING: National study with 41 large Dutch LTC organisations. PARTICIPANTS: The LTC organisations represented 563 nursing home locations and almost 43 000 residents. RESULTS: At least 36 of the 41 organisations had one or more SARS-CoV-2 infections among their residents. Most OTs were composed of management, medical staff, support services staff, policy advisors and communication specialists. Topics that emerged from the documents were: crisis management, isolation of residents, personal protective equipment and hygiene, staff, residents' well-being, visitor policies, testing and vaccination. CONCLUSIONS: OT meeting minutes are a valuable data source to monitor the impact of and responses to COVID-19 in nursing homes. Depending on the course of the COVID-19 pandemic, data collection and analysis will continue until November 2021. The results are used directly in national and organisational COVID-19 policy.

Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers.

BACKGROUND: Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it. OBJECTIVES: To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation. DESIGN: Descriptive exploratory qualitative design using semi-structured interviews. SETTING: Ten nursing homes in the Netherlands. PARTICIPANTS: Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program. METHODS: Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program. RESULTS: In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation: (1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one's own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers. (2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement. (3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement. CONCLUSION: To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers. The Namaste study is registered with the Netherlands Trial Register (NTR5692).

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial.

BACKGROUND: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia. METHODS: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated. RESULTS: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 €, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 €/unit of effect extra was 0.70 for the QUALID, QALY and GAIN. CONCLUSIONS: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable. TRIAL REGISTRATION: Netherlands Trial Register ( http://www.trialregister.nl/trialreg/index.asp , identifier: NL5570, date of registration: 2016/03/23).

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial.

INTRODUCTION: Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable. METHODS AND ANALYSIS: Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed. ETHICS AND DISSEMINATION: The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate. TRIAL REGISTRATION NUMBER: NTR5692.