Jan Jukema

The challenges of shared decision making in dementia care networks

ABSTRACTBackground:Decision making is an important part of managing ones 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.

Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events

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.

An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study

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.

Eén praktijk, twee talen

SamenvattingIn hun werk om mensen met dementie en hun naasten zo goed mogelijk te ondersteunen en te begeleiden staan casemanagers voortdurend in het spanningsveld tussen de unieke leefwereld van hun cliënten en de systeemwereld van de betrokken zorgorganisaties. Deze werelden hebben ieder een eigen taal met unieke woorden, codes en regels van communiceren. In het dagelijks werk van casemanagers dementie komen beide werelden samen en dit vraagt van hen ‘tweetaligheid’, de kundigheid om beide talen adequaat te gebruiken en zo de leefwereld van de cliënt te verbinden met de systeemwereld van de organisatie.

Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach

Abstract 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. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools. Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.

Recognizing decision needs: first step for collaborative deliberation in dementia care networks

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.

Competencies in European gerontological higher education. An explorative study on core elements

ABSTRACT This study explores whether there is a common core of competencies in European gerontology education programs by doing a cross-comparison of five undergraduate-level programs. Content analysis of competency profile documents at the five European educational programs were studied using thematic analysis. Study results document that there indeed is a common core of elements in gerontological educational programs. Three clusters which included a total of 15 categories were identified. The clusters were labeled professional attitude, communication skills, and service provision. Clusters and categories varied across the five programs. One program in particular included fewer clusters and categories. This may reflect a difference in focus in the program but could also reflect a less elaborately formulated competency profile document. The results of this study show that, at least at the level of formulating competencies, there is a strong agreement on the major components that are important for a gerontologist at the undergraduate level.

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

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.

Dagbesteding bij dementie

SamenvattingInleiding 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.Methode Een kwalitatief onderzoek op basis van 244 semigestructureerde interviews met 19 ouderen met dementie, hun mantelzorgers (36) en hun zorgverleners (38).Resultaten De besluitvorming bleek afhankelijk van 1) aanvankelijke verwachtingen over dagbesteding, 2) onderhandeling over het uitproberen ervan en 3) de reacties van de persoon met dementie na het uitproberen. In het besluitvormingsproces bleken drie patronen mogelijk: 1) positief samenwerken, 2) conflicterende perspectieven samenbrengen en 3) geen commitment bereiken.Conclusie Samen beslissen met mensen met dementie vergt een specifieke aanpak. De huisarts kan hierbij naar de beweegredenen van alle betrokkenen luisteren en zoeken naar passende mogelijkheden. Hierbij is het belangrijk beslissingen rond dagbesteding niet alleen te baseren op gesprekken, maar ook op ervaringen. Dit stelt de persoon met dementie in staat invloed uit te oefenen op de besluitvorming.

Op weg naar cultuursensitieve zorg

SamenvattingHet begrip mag ingewikkeld lijken, het idee erachter is simpel: samenwerken en met respect voor elkaars inbreng alle aanwezige kennis en vaardigheden benutten voor een gezamenlijk doel.Cocreatiebleek in Zwolle een effectieve methode om van onderop cultuursensitieve zorg op de maatschappelijke en politieke agenda te krijgen.