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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Although advance directives may seem useful instruments in decision-making regarding incompetent patients, their validity in cases of dementia has been a much debated subject and little is known about their effectiveness in practice. This paper assesses the contribution of advance directives to decision-making in the care of people with dementia, with a special focus on non-treatment directives and directives for euthanasia. Methods: The relevant problems from the ethical debate on advance directives in cases of dementia are summarized and we discuss how these relate to what is known from empirical research on the validity and effectiveness of advance directives in the clinical practice of dementia care. Results: The ethical debate focuses essentially on how to respond to the current wishes of a patient with dementia if these contradict the patient's wishes contained in an advance directive. The (very limited) empirical data show that the main factors in medical decision-making in such cases is not the patient's perspective but the medical judgment of the physician and the influence of relatives. Insight into the experiences and wishes of people with dementia regarding advance directives is totally lacking in empirical research. Conclusions: Ethics and actual practice are two "different worlds" when it comes to approaching advance directives in cases of dementia. It is clear, however, that the use of advance directives in practice remains problematic, above all in cases of advance euthanasia directives, but to a lesser extent also when nontreatment directives are involved. Although generally considered valid, their effectiveness seems marginal. Further empirical research into the (potential) value of advance directives in dementia care is recommended. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]