ABSTRACTBackground:Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks. METHODS:A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes. RESULTS:The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network. CONCLUSION:The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.

Inleiding Dagbesteding buitenshuis kan bijdragen aan het langer thuis wonen van mensen met dementie. Het onderwerp ligt echter vaak gevoelig. Het bepalen van de dagbesteding is bij uitstek iets om samen over te beslissen. Recent onderzoek laat zien hoe mensen met dementie bij deze beslissing betrokken kunnen worden.

Purpose: The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks. Method: An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data. Results: Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment. Conclusions: People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others.

Objective: This study describes the process elements of decision-making for dementia, in order to enrich a model to facilitate shared decision-making for professionals working with people with dementia and their informal caregivers.Methods: We performed a qualitative study based on secondary analysis of 117 interviews from 23 care networks consisting of people with dementia, their informal caregivers and professionals. Findings were compared to an existing model of collaborative deliberation.Results: We made an enhancement to the existing collaborative deliberation model, to include: (1) constructive network engagement, (2) recognizing the need for a decision, (3) defining what to decide on, (4) developing alternatives, (5) constructing preferences through deliberation and trying out alternatives, (6) multiple preference integration, and (7) evaluating decision-making.Conclusion: In describing the process elements of decision-making in dementia, this empirical study proposes a modification of the model of collaborative deliberation for the context of dementia care. The adaptation highlights the special attention needed to recognize and define what to decide on, try out alternatives, and handle conflicting interests and preferences.Practice implications: Professionals should be attentive to mark the start of the decision-making process and work with participants towards a shared view on the pressing matters at hand. (C) 2017 Elsevier B.V. All rights reserved.

Objective To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. Design A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. Setting Community settings and nursing homes in the Netherlands. Participants 19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). Results The participants’ responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. Conclusion Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged—managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.

ObjectivePain is a frequent long‐term consequence of stroke, but its relation to emotional and social well‐being is poorly studied in stroke populations. We aimed to identify the prevalence of substantial pain among institutionalized stroke patients and to explore its relation to emotional distress (ED) and low social engagement (SE).MethodsIn a cross‐sectional design, we collected data of 274 chronic stroke patients in Dutch nursing homes. Observation lists were filled out in structured interviews with qualified nurse assistants who knew the residents well. Pain and SE were measured with the Resident Assessment Instrument for Long‐term Care Facilities, and ED was measured with the Neuropsychiatric Inventory Questionnaire (NPIQ).ResultsSubstantial pain was present in 28% of the residents, mostly located in the affected body side (68%). Multilevel regression analyses revealed that this pain was independently related to a 60% increase in NPIQ score (β 3.18 [1.84–4.53]) and to clinically relevant symptoms of delusions (odds ratio [OR] 8.45 [1.82–39.05]), agitation/aggression (OR 3.82 [1.76–8.29]), depression (OR 3.49 [1.75–6.98]), and anxiety (OR 2.32 [1.08–4.97]). Substantial pain was associated with low SE when adjusted for clinical covariates (OR 4.25 [1.72–10.53]), but only in residents with no/mild or severe cognitive impairment. This relation disappeared when additionally corrected for NPIQ score (OR 1.95 [0.71–5.39]).ConclusionsPain is a serious and multidimensional problem among institutionalized stroke patients. It is related to increased ED, which in turn can be a pathway to low SE as an indicator of social vulnerability. Future research should reveal how pain management in nursing homes can be tailored to the needs of this patient group. Copyright © 2014 John Wiley & Sons, Ltd.

Background An interactive web tool has been developed for facilitating shared decision-making in dementia-care networks. The DecideGuide provides a chat function for easier communication between network members, a deciding together function for step-by-step decision-making, and an individual opinion function for eight dementia-related life domains. The aim of this study was to gain insight in the user friendliness of the DecideGuide, user acceptance and satisfaction, and participants’ opinion of the DecideGuide for making decisions. Materials and methods A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the DecideGuide. Structured interviews took place at the start, middle, and end of the field study with people with dementia, informal caregivers, and case managers. Four observations of case managers’ home visits focused on members’ responses and use of the tool. Results (1) The user friendliness of the chat and individual opinion functions was adequate for case managers and most informal caregivers. Older participants, with or without dementia, had some difficulties using a tablet and the DecideGuide. The deciding together function does not yet provide adequate instructions for all. The user interface needs simplification. (2) User acceptance and satisfaction: everybody liked the chat’s easy communication, handling difficult issues for discussion, and the option of individual opinions. (3) The DecideGuide helped participants structure their thoughts. They felt more involved and shared more information about daily issues than they had done previously. Conclusion Participants found the DecideGuide valuable in decision-making. The chat function seems powerful in helping members engage with one another constructively. Such engagement is a prerequisite for making shared decisions. Regardless of participants’ use of the tool, they saw the DecideGuide’s added value.

To support shared decision making in care networks of people with dementia, an interactive web tool for people with dementia, informal caregivers, case managers and other professional caregivers is being developed. This study aims to identify user requirements for such a tool. A multiple method study with an iterative, participatory design was conducted. Data collection involved 50 semi-structured interviews with end users (people with dementia, informal caregivers, case managers and other professional caregivers), eight focus group interviews with end users and experts, a dementia expert consultation, and two multidisciplinary workshops. Content analysis was applied to the data and resulted in two sets of user requirements for the interactive web tool. The first set of user requirements consists of care and well-being related topics addressing decision making in dementia. Most important topics are care, daily activities, mobility, safety, future, finances, living, and social contacts. The second set of user requirements addresses additional needs and preferences of end users such as: participation of the person with dementia in the decision-making, insight into the decision history, anticipation of possible future problems and decisions, and the degree of self-management and autonomy preservation of the person with dementia. The two sets of user requirements form a solid basis for the further development of a user-friendly, interactive web tool facilitating shared decision making in care networks of people with dementia. © by authors.

BACKGROUND:The Grip on Challenging Behavior care program for managing challenging behavior was implemented in the dementia special care units of 17 Dutch nursing homes. A process evaluation of the implementation of the care program was performed to determine the quality of the implementation and the lessons to be learned for future implementation.METHODS:The care program was implemented according to a stepped wedge design. First-order data (data on recruitment, reach, relevance and feasibility) were used to determine the validity of the study, and second-order data (intervention quality and the barriers and facilitators for implementing the care program) were used to describe the implementation process. Two structured questionnaires were administered to care staff and key stakeholders and semi-structured interviews were held in the units.RESULTS:University affiliated and non-affiliated nursing homes from different parts of the Netherlands participated. The resident participation rate was over 95% and the participation rate for the training sessions was 82%. Respondents considered the care program relevant and feasible. The degree of implementation was not optimal. The barriers and facilitators in implementing the care program could be divided into three categories: organizational aspects, culture on the unit and aspects of the care program itself.CONCLUSIONS:The recruitment, reach, relevance and feasibility are sufficient to allow for analysis and generalization of the effects of the care program, but the degree of implementation should be taken into account in further analysis. Future projects that involve implementation should consider the specific features of the organization and the cultural orientation of the unit to better adapt to specific needs.TRIAL REGISTRATION:The Netherlands National Trial register under number NTR2141 registered on 11 December 2009. Randomization took place in November 2010, and the first intervention group started using the intervention in February 2011.

OBJECTIVES:To optimize care and interventions to improve care, and to reduce staff burden, it is important to have knowledge of the relation between individual neuropsychiatric symptoms and distress of care staff. We therefore explored the relation between frequency and severity of individual neuropsychiatric symptoms and distress of care staff.DESIGN:This is an explorative study with a cross-sectional design.PARTICIPANTS AND SETTING:Care staff was interviewed regarding 432 residents of 17 nursing homes for people with dementia.MEASUREMENTS:Behavioural problems were assessed using the Nursing Home version of the Neuropsychiatric Inventory (NPI-NH) questionnaire. The distress scale of the NPI-NH was used to determine the distress of care staff.RESULTS:Agitation/aggression had the highest mean distress score and was also the most prevalent symptom. Disinhibition and irritability/lability also had high mean distress scores, whereas euphoria/elation, hallucinations and apathy had the lowest mean distress score. The symptom severity of each symptom strongly predicted the distress score, whereas the frequency of the symptoms was a less important factor.CONCLUSIONS:Although some of these findings are in accordance with studies among informal caregivers, there are also notable differences. Apathy caused little distress among care staff. Therefore, care staff might not feel the urgency to explore the causes of this symptom. The findings of this study emphasize the importance of supporting care staff in the management of behavioural problems, especially aggression and apathy.

Background: Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to diminishing the challenging behaviour of residents, improve job satisfaction and reduce the care staff's feelings of burnout.Objectives: To determine the effects of a care programme for the challenging behaviour of nursing home residents with dementia on the burnout, job satisfaction and job demands of care staff.Design: The care programme was implemented according to a stepped wedge design in which care units were randomly divided over five groups with different time points of starting with implementation.Setting: 17 Dutch dementia special care units.Participants: Care staff members of the 17 units.Intervention: The care programme consists of an education package and of various structured assessment tools that guide professionals through the multidisciplinary detection, analysis, treatment and evaluation of treatment of challenging behaviour.Methods: Burnout, job satisfaction and job demands were measured before implementation, halfway through the implementation process and after all the care units had implemented the care programme. Burnout was measured with the Dutch version of the Maslach burnout inventory (UBOS-C, three subscales); job satisfaction and job demands were measured with subscales of the Leiden Quality of Work Questionnaire. Mixed model analyses were used to determine effects. Care staff could not be blinded for the intervention.Results: Of the 1441 questionnaires, 645 were returned (response 45%, 318 control measurements, 327 intervention measurements) by 380 unique care staff members. Significant effects were found on job satisfaction (0.93, 95% Cl 0.48-1.38). On the other outcomes, no significant changes in the scores were found.Conclusion: Positive effects of using the Grip on Challenging behaviour care programme were found on job satisfaction, without an increase in job demands. (C) 2014 Elsevier Ltd. All rights reserved.

Background: Current guidelines and theories on the origin of challenging behaviour in dementia indicate that a structured multidisciplinary approach to its management is necessary. In the Grip on Challenging Behaviour study, a care programme was developed to improve the management of challenging behaviour. Method: In developing the care programme, the overlapping parts of dementia care guidelines were supplemented with discipline-specific parts. Three meetings with experts were arranged to further develop the structure of the care programme and to ensure a good fit with practice. Results: The care programme consists of four steps: detection, analysis, treatment, and evaluation. For each step, forms were developed to guide and structure the process and assign responsibilities for each discipline. As well as a description of the development and the content of the care programme, this paper presents two case studies in which the programme was used. Conclusion: The Grip on Challenging Behaviour care programme provides a way for dementia special care units to manage challenging behaviour in a structured way and with a multidisciplinary approach making use of their own resources.

Developing an IT application facilitating Shared Decision Making (SDM) in dementia is complex. This is caused by the increasing cognitive decline associated with dementia and the number of involved people (people with dementia, informal caregivers and case managers). The aim of this study is to identify design issues in developing a user-friendly IT application facilitating Shared decision-making in dementia. Data collection in this study with an iterative participatory design based on the CeHRes roadmap included: focus group interviews with people with dementia, informal caregivers and case managers; a cognitive walkthrough with researchers; and a first usability test with case managers. This resulted in a list of issues addressing the quality of the system, content and service and a revision of the tool before informal caregivers and people with dementia will be invited to participate in usability tests.

Objectives: The Grip on Challenging Behavior care program was developed using the current guidelines and models on managing challenging behavior in dementia in nursing homes. It was hypothesized that the use of the care program would lead to a decrease in challenging behavior and in the prescription of psychoactive drugs without increase in use of restraints.Design: A randomized controlled trial was undertaken using a stepped-wedge design to implement the care program and to evaluate the effects. An assessment of challenging behavior and psychoactive medication was undertaken every 4 months on all participating units followed by the introduction of the care program in a group of 3 to 4 units. A total of 6 time assessments took place over 20 months.Setting: Seventeen dementia special care units of different nursing homes.Participants: A total of 659 residents of dementia special care units. All residents with dementia on the unit were included. Units were assigned by random allocation software to 1 of 5 groups with different starting points for the implementation of the care program.Intervention: A care program consisting of various assessment procedures and tools, which ensure a multidisciplinary approach and which structure the process of managing challenging behavior in dementia.Measurements: Challenging behavior was measured using the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory. Research assistants (blinded for intervention status of the unit) interviewed nurses on the units about challenging behavior. Data on psychoactive drugs and restraints were retrieved from resident charts.Results: A total of 2292 assessments took place involving 659 residents (1126 control measurements, 1166 intervention measurements). The group of residents who remained in the intervention condition compared with the group in the control condition differed significantly in the CMAI change scores between successive assessments [-2.4 CMAI points, 95% confidence interval (CI) -4.3 to -0.6]. No significant effects were found for the control-to-intervention group compared with the group who remained in the control group (0.0 CMAI points, 95% CI -2.3 to 2.4). Significant effects were found on 5 of the 12 Neuropsychiatric Inventory items and on the use of antipsychotics (odds ratio 0.54, 95% CI 0.37-0.80) and antidepressants (odds ratio 0.65, 95% CI 0.44-0.94). No effect on use of restraints was observed.Conclusions: The Grip on Challenging behavior program was able to diminish some forms of challenging behavior and the use of psychoactive drugs. (C) 2014 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Apathy is a frequent neuropsychiatric consequence of stroke. In the under-researched population of institutionalized stroke patients, we aimed to explore the prevalence of apathy, its clinical correlates, and the relation to the amount of stimulating activities in the nursing home (NH). Design: A cross-sectional, observational study. Setting: Dutch NHs. Participants: 274 chronic stroke patients. Measurements: Data were collected through observation lists that were filled out in structured interviews with qualified nurse assistants who knew the residents well. The lists comprised the NH-version of the Apathy Evaluation Scale (AES10), the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. Attending physicians and therapists provided additional information. Results: Apathy (AES10 score >= 30) was present in 28% of residents. Multilevel regression analyses revealed that this apathy was independently related to (moderate, severe) cognitive impairment (odds ratio [OR] 11.30 [95% confidence interval (CI): 4.96-25.74], OR 5.54 [95% CI: 2.48-12.40]), very severe ADL-dependency (OR 12.10 [95% CI: 1.35-108.66]), and being >12 hours per day in bed (OR 2.10 [95% CI: 1.07-4.13]). It was not related to depressive mood symptoms (OR 1.75 [95% CI: 0.91-3.37]). Only in residents aged less than 80 years were a higher amount of activities independently related to a lower AES10 score (-0.70 [95% CI: -1.18 to -0.20] points per four extra activities in a 4-week period). Conclusions: Apathy is prevalent in largely one-quarter of institutionalized stroke patients, and that is most strongly related to cognitive impairment in this explorative study. We discuss the need for research on the relation with distinct dimensions of depression and fatigue as partly overlapping constructs, and on (individualized) stimulating activities as a possible intervention method.