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... Show moreObjectives 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. Show less
Steen, J.T. van der; Nakanishi, M.; Block, L. van den; Giulio, P. di; Gonella, S.; Schmitten, J.I.D.; ... ; European Assoc Palliat Care EAPC 2023
INTRODUCTIONExisting advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition... Show moreINTRODUCTIONExisting advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention.METHODSDelphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board.RESULTSACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication.DISCUSSIONA communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. Show less
Smaling, H.J.A.; Xu, J.Y.; Nakanishi, M.; Shinan-Altman, S.; Mehr, D.R.; Radbruch, L.; ... ; Steen, J.T. van der 2023
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... Show moreBackground 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, technologyuse 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 CONTEND 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. Show less
Nishimura, M.; Harrison Dening, K.; Sampson, E.L.; Iglesias de Oliveira Vidal, E.; Correia de Abreu, W.; Kaasalainen, S.; ... ; Steen, J.T. van der 2022
Background:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often... Show moreBackground:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often inadequately managed. Three proven effective methods for managing neuropsychiatric symptoms were integrated into a single intervention method: the STIP-Method, a personalized integrated stepped-care method to prevent and treat neuropsychiatric symptoms. The STIP-Method comprises 5 phases of clinical reasoning to neuropsychiatric symptoms and 4 stepped-care interventions and is supported with a web application.Objective:This study aims to identify the facilitators and barriers in the implementation of the STIP-Method in nursing homes.Methods:A mixed methods design within a participatory action research was used to implement the STIP-Method in 4 facilities of 2 Dutch nursing home organizations. In total, we aimed at participation of 160-200 persons with dementia and expected an intervention fidelity of 50% or more, based on earlier studies regarding implementation of effective psychosocial interventions to manage neuropsychiatric symptoms. All involved managers and professionals were trained in the principles of the STIP-Method and in using the web application. An advisory board of professionals, managers, and informal caregivers in each facility supported the implementation during 21 months, including an intermission of 6 months due to the COVID-19 pandemic. In these 6-weekly advisory board meetings, 2 researchers stimulated the members to reflect on progress of the implementation by making use of available data from patient records and the web application. Additionally, the 2 researchers invited the members to suggest how to improve the implementation. Data analysis will involve (1) analysis of facilitators and barriers to the implementation derived from verbatim text reports of advisory board meetings to better understand the implementation process; (2) analysis of patient records in accordance with multidisciplinary guidelines to neuropsychiatric symptoms: personalized, interdisciplinary, and proactive management of neuropsychiatric symptoms; (3) evaluation of the web application in terms of usability scores; (4) pre- and postimplementation analysis of patient records and the web application to evaluate the impact of the STIP-Method, such as changes in neuropsychiatric symptoms and informal caregiver burden.Results:We enrolled 328 persons with dementia. Data collection started in July 2019 and ended in December 2021. The first version of this manuscript was submitted in October 2021. The first results of data analysis are expected to be published in December 2022 and final results in June 2023.Conclusions:Our study may increase understanding of facilitators and barriers to the prevention and treatment of neuropsychiatric symptoms in nursing home residents with dementia by implementing the integrated STIP-Method. The need for well-designed implementation studies is of importance to provide nursing homes with optimal tools to prevent and treat neuropsychiatric symptoms. Show less
Verstraeten, H.M.F.; Ziylan, C.; Gerritsen, D.L.; Huijsman, R.; Nakanishi, M.; Smalbrugge, M.; ... ; Bakker, T.J.E.M. 2022
Background:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often... Show moreBackground:Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often inadequately managed. Three proven effective methods for managing neuropsychiatric symptoms were integrated into a single intervention method: the STIP-Method, a personalized integrated stepped-care method to prevent and treat neuropsychiatric symptoms. The STIP-Method comprises 5 phases of clinical reasoning to neuropsychiatric symptoms and 4 stepped-care interventions and is supported with a web application.Objective:This study aims to identify the facilitators and barriers in the implementation of the STIP-Method in nursing homes.Methods:A mixed methods design within a participatory action research was used to implement the STIP-Method in 4 facilities of 2 Dutch nursing home organizations. In total, we aimed at participation of 160-200 persons with dementia and expected an intervention fidelity of 50% or more, based on earlier studies regarding implementation of effective psychosocial interventions to manage neuropsychiatric symptoms. All involved managers and professionals were trained in the principles of the STIP-Method and in using the web application. An advisory board of professionals, managers, and informal caregivers in each facility supported the implementation during 21 months, including an intermission of 6 months due to the COVID-19 pandemic. In these 6-weekly advisory board meetings, 2 researchers stimulated the members to reflect on progress of the implementation by making use of available data from patient records and the web application. Additionally, the 2 researchers invited the members to suggest how to improve the implementation. Data analysis will involve (1) analysis of facilitators and barriers to the implementation derived from verbatim text reports of advisory board meetings to better understand the implementation process; (2) analysis of patient records in accordance with multidisciplinary guidelines to neuropsychiatric symptoms: personalized, interdisciplinary, and proactive management of neuropsychiatric symptoms; (3) evaluation of the web application in terms of usability scores; (4) pre- and postimplementation analysis of patient records and the web application to evaluate the impact of the STIP-Method, such as changes in neuropsychiatric symptoms and informal caregiver burden.Results:We enrolled 328 persons with dementia. Data collection started in July 2019 and ended in December 2021. The first version of this manuscript was submitted in October 2021. The first results of data analysis are expected to be published in December 2022 and final results in June 2023.Conclusions:Our study may increase understanding of facilitators and barriers to the prevention and treatment of neuropsychiatric symptoms in nursing home residents with dementia by implementing the integrated STIP-Method. The need for well-designed implementation studies is of importance to provide nursing homes with optimal tools to prevent and treat neuropsychiatric symptoms. Show less
Wammes, J.D.; Nakanishi, M.; Steen, J.T. van der; Vroomen, J.L.M. 2022
Background In 2006, Japan introduced the Revised Medical Care Act aimed to shift end-of-life care from hospitals to communities. For patients and families, dying in hospital can be highly... Show moreBackground In 2006, Japan introduced the Revised Medical Care Act aimed to shift end-of-life care from hospitals to communities. For patients and families, dying in hospital can be highly distressing. Persons with dementia are especially susceptible to negative hospital-related outcomes. This study aims to evaluate whether the Revised Medical Care Act is associated with a decrease in the proportion of hospital deaths for older adults and persons with dementia over a 20-year period covering the reform.Methods and findings This is a population-level, repeated cross-sectional study using mortality data from Vital Statistics Japan. Participants were Japanese older adults 65 years or older with and without dementia who died between 1996 and 2016. The policy intervention was the 2006 Revised Medical Care Act that increased community care infrastructure. The primary outcome was location of death in hospital, nursing home, home, or elsewhere. The trend in the proportion of location of death, before and after the reforms was estimated using an interrupted time-series analysis. All analyses were adjusted for sex and seasonality. Of the 19,307,104 older adult decedents, 216,442 had dementia identified on their death certificate. Death in nursing home (1.10, 95% CI 1.10-1.10), home (1.08, 95% CI 1.08-1.08), and elsewhere (1.07, 95% CI 1.07-1.07) increased over time compared to hospital deaths for the total population after reform implementation. Nursing home (1.04, 95% CI 1.03-1.05) and home death (1.11, 95% CI 1.10-1.12) increased after reform implementation for persons with dementia.Conclusion This study provides evidence that the 2006 Revised Medical Care Act was associated with decreased older adults dying in hospital regardless of dementia status; however, hospital continues as the primary location of death. Show less
