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
BackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and... Show moreBackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.ObjectiveThis review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver.DesignScoping review.MethodsA literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review.ResultsNine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills.ConclusionsThis review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people’s readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other. 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
Steen, J.T. van der; Engels, Y.; Touwen, D.P.; Kars, M.C.; Reyners, A.K.L.; Linden, Y.M. van der; Korfage, I.J. 2023
The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct... Show moreThe Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches. Show less
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... Show moreBackground: 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. & COPY; 2023 Published by Elsevier Inc. on behalf of American Society for Pain Management Nursing. Show less
Boersema-Wijma, D.J.; Duijn, E. van; Heemskerk, A.W.; Steen, J.T. van der; Achterberg, W.P. 2023
BackgroundAs Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.ObjectiveTo review the... Show moreBackgroundAs Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.ObjectiveTo review the literature focusing on palliative care in advanced stage HD, and the level of evidence.MethodsPublications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute.ResultsOur search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).ConclusionsTo deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs. Show less
Bavelaar, L.; Visser, M.; Walshe, C.; Preston, N.; Kaasalainen, S.; Sussman, T.; ... ; Steen, J.T. van der 2023
Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an... Show moreBackground the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. Design a pretest-posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting. Show less
Peeters, G.; Kok, A.A.L.; Bruin, S. de; Campen, C. van; Graff, M.; Nieuwboer, M.; ... ; Rikkert, M.G.M.O. 2023
The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy and practice. To date, resilience research in... Show moreThe concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socioecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps to understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience focused interventions can strengthen coping mechanisms to maintain functioning and wellbeing of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socioecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline. Show less
Advance care planning (ACP) can help prepare for future losses and decisions to be taken. However, relatives of persons with dementia may wait for healthcare professionals to initiate ACP... Show moreAdvance care planning (ACP) can help prepare for future losses and decisions to be taken. However, relatives of persons with dementia may wait for healthcare professionals to initiate ACP conversations which may not adequately address their individual information needs. To evaluate inducing and enhancing conversations about meaning and loss, we conducted an ethnographic study on nurse-led ACP conversations using a question prompt list (QPL) on six dementia wards of a nursing home in the Netherlands from January to September 2021. Staff received training in using the QPL, with information and sample questions to inspire relatives to ask their questions, in particular on meaning and loss. Thematic analysis was applied to transcribed interviews and memos of observations. Nursing staff in particular was concerned about having to be available to answer questions continuously. Relatives used the study as an opportunity to get in touch with professionals, and they saw the QPL as an acknowledgement of their needs. There was a mismatch in that staff wished to discuss care goals and complete a care plan, but the relatives wanted to (first) address practical matters. A QPL can be helpful to conversations about meaning and loss, but nursing staff need dedicated time and substantial training. Joint agenda setting before the conversation may help resolve a mismatch in the preferred topics and timing of conversations. Show less
Steen, J.T. van der; Leussen, C.A. van; Ballentine, J.; Gribben, L.; Reid, J.; Hasson, F.; ... ; McLaughlin, D. 2023
Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models... Show moreMuch is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early. Show less
Buuren, C.P. van; Steen, J.T. van der; Olthof-Nefkens, M.; Bakker, C.; Koopmans, R.T.C.M.; Perry, M.; Kalf, J.G. 2023
Background:Persons with dementia are at risk of developing nutritional problems. Theoretical models on nutritional problems have been developed, but have not been evaluated with healthcare... Show moreBackground:Persons with dementia are at risk of developing nutritional problems. Theoretical models on nutritional problems have been developed, but have not been evaluated with healthcare professionals.Objective:This study aimed to explore the comprehensiveness and applicability of a theoretical model of nutritional problems in persons with dementia for daily nursing home practice.Methods:A qualitative design employing a combined deductive and inductive approach was used. Healthcare professionals were eligible to participate if they 1) had expert knowledge of and experience with nutritional problems related to dementia, and 2) worked in a nursing home affiliated with an academic network covering the east and south of the Netherlands. Three focus group interviews with 20 healthcare professionals from seven professions were held. We conducted thematic analysis and we compared themes with existing theoretical models from the literature.Results:We identified six themes, four of which corresponded with the existing models (observing and analysing nutritional problems; consequences of nutritional problems; functioning of the person with dementia; environmental factors). Interprofessional collaboration and ethical factors were identified as new themes. The analyses indicated interactions within each theme, between themes, and a bidirectional connection between themes.Conclusions:This study demonstrated the relevance of interprofessional collaboration and ethical considerations in nutritional problems related to dementia. It uncovered complex bidirectional relations within and between factors regarding nutritional problems. All aspects should be taken into account to minimize the consequences of nutritional problems for persons with dementia. Show less
Background: Timely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived... Show moreBackground: Timely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived optimal timing of ACP initiation and its triggers relate to recorded actual timing in patients with cancer, organ failure, or multimorbidity. Methods: In this mixed-methods study in the Netherlands, we analysed health records selected from a database with primary care routine data and with a recorded ACP conversation in the last two years before death of patients who died with cancer, organ failure, or multimorbidity. We compared actual timing of ACP initiation as recorded in health records of 51 patients with the perceived optimal timing as determined by 83 independent GPs who studied these records. Further, to identify and compare triggers for GPs to initiate ACP, we analysed the health record documentation around the moments of the recorded actual timing of ACP initiation and the perceived optimal timing of ACP initiation. We combined quantitative descriptive statistics with qualitative content analysis. Results: The recorded actual timing of ACP initiation was significantly closer to death than the perceived optimal timing in patients with cancer (median 88 vs. 111 days before death (p = 0.049)), organ failure (227 vs. 306 days before death (p = 0.02)) and multimorbidity (113 vs. 338 days before death (p = 0.006)). Triggers for recorded actual versus perceived optimal timing were similar across the three groups, the most frequent being 'expressions of patients' reflections or wishes' (14% and 14% respectively) and 'appropriate setting' (10% and 13% respectively). Conclusion: ACP in general practice was initiated and recorded later in the illness trajectory than considered optimal, especially in patients with organ failure or multimorbidity. As triggers were similar for recorded actual and perceived optimal timing, we recommend that GPs initiate ACP shortly after a trigger is noticed the first time, rather than wait for additional or more evident triggers when the illness is in an advanced stage. Show less
Hoffstaedt, H.E.; Boogaard, J.A.; Tam, M.C.; Bodegom-Vos, L. van; Stoppelenburg, A.; Hartog, I.D.; ... ; Steen, J.T. van der 2022
Background: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we... Show moreBackground: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we assessed current practice and influencing factors as perceived by healthcare professionals. Methods: A two-phase study was conducted including a survey exploring healthcare professionals' practice of supporting family caregivers in Western urbanized Netherlands in 2017, and focus groups exploring facilitators and barriers to supporting family caregivers in 2018. Focus group data were thematically analyzed with deductive coding based on the COM-B system. Results: Of the 379 survey respondents (response 11%), 374 were eligible (physicians, 28%; nurses, 64%; nurse assistants, 9%). The respondents practiced in academic hospitals (52%), general hospitals (31%), nursing homes (11%) and hospices (5%). They reported to always (38%), most of the time (37%), sometimes (21%) or never (5%) provide support to family caregivers during the illness trajectory. Respondents reported to always (28%), sometimes (39%), or never (33%) provide support after death. Four focus group discussions with 22 healthcare professionals elicited motivational facilitators and barriers to supporting family caregivers (e.g., relationship with family caregivers, deriving satisfaction from supporting them), and factors related to capability (e.g., (lacking) conversational skills, knowledge) and opportunity (e.g., (un)availability of protocols and time). Conclusions: Support for family caregivers, especially after the patient's death, is not systematically integrated in working procedures of healthcare professionals. The barriers and facilitators identified in this study can inform the development of an intervention aiming to enhance support for family caregivers. Show less
Hoffstaedt, H.E.; Boogaard, J.A.; Tam, M.C.; Bodegom-Vos, L. van; Stoppelenburg, A.; Hartog, I.D.; ... ; Steen, J.T. van der 2022
Background: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we... Show moreBackground: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we assessed current practice and influencing factors as perceived by healthcare professionals. Methods: A two-phase study was conducted including a survey exploring healthcare professionals’ practice of supporting family caregivers in Western urbanized Netherlands in 2017, and focus groups exploring facilitators and barriers to supporting family caregivers in 2018. Focus group data were thematically analyzed with deductive coding based on the COM-B system. Results: Of the 379 survey respondents (response 11%), 374 were eligible (physicians, 28%; nurses, 64%; nurse assistants, 9%). The respondents practiced in academic hospitals (52%), general hospitals (31%), nursing homes (11%) and hospices (5%). They reported to always (38%), most of the time (37%), sometimes (21%) or never (5%) provide support to family caregivers during the illness trajectory. Respondents reported to always (28%), sometimes (39%), or never (33%) provide support after death. Four focus group discussions with 22 healthcare professionals elicited motivational facilitators and barriers to supporting family caregivers (e.g., relationship with family caregivers, deriving satisfaction from supporting them), and factors related to capability (e.g., (lacking) conversational skills, knowledge) and opportunity (e.g., (un)availability of protocols and time). Conclusions: Support for family caregivers, especially after the patient’s death, is not systematically integrated in working procedures of healthcare professionals. The barriers and facilitators identified in this study can inform the development of an intervention aiming to enhance support for family caregivers. Show less
Koniewski, M.; Baranska, I.; Kijowska, V.; Steen, J.T. van der; Wichmann, A.B.; Payne, S.; ... ; PACE Project 2022
The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its... Show moreThe Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability, as well as the psychometric characteristics of the items comprising the scale. Data were collected in cross-sectional study in Belgium, Finland, Italy, the Netherlands and Poland. The factorial structure was tested in confirmatory factor analysis. Item parameters were obtained using an item response theory model. Participants were 737 relatives of nursing home residents who died up to 3 months prior to the study. In general, the FPPFC scale proved to be a unidimensional and reliable measure of the perceived quality of physician-family communication in nursing home settings in all five countries. Nevertheless, we found unsatisfactory fit to the data with a confirmatory model. An item that referred to advance care planning performed less well in Poland and Italy than in the Northern European countries. In the item analysis, we found that with no loss of reliability and with increased coherency of the item content across countries, the full 7-item version can be shortened to a 4-item version, which may be more appropriate for international studies. Therefore, we recommend use of the brief 4-item FPPFC version by nursing home managers and professionals as an evaluation tool, and by researchers for their studies as these four items confer the same meaning across countries. Show less
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... Show moreObjectives: 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. Show less
Harding, A.J.E.; Doherty, J.; Bavelaar, L.; Walshe, C.; Preston, N.; Kaasalainen, S.; ... ; MySupport Study Group 2022
Background: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best... Show moreBackground: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. Methods: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. Discussion: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia. Show less
Smaling, H.J.A.; Francke, A.L.; Achterberg, W.P.; Joling, K.J.; Steen, J.T. van der 2022
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... Show moreObjective(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. Show less
