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The Analytical Hierarchy Process (AHP), a multicriteria decision support system that has been successfully applied to numerous decision-making situations, has been applied to patient assessment. The AHP was used with Timeslips™, a group storytelling program that encourages creative expression among dementia patients, to determine the optimal scale for pre and post assessment among the nine most common agitation and anxiety scales. The AHP used the six criteria identified by qualitative assessment of the nine scales: (1) validity/reliability, (2) observation period, (3) training required, (4) time to administer, (5) most appropriate administrator, and (6) accessibility/cost. The AHP indicated that the Overt Agitation & Anxiety Scale was optimal for use with Timeslips; the process and results are discussed.

This chapter aims to provide an overview of the ethical framework and decision-making in clinical dementia research, and to analyze and discuss the ethical challenges and issues that can arise when conducting clinical dementia research.

Informed consent is the most scrutinized and controversial aspect of clinical research ethics. In clinical dementia research, assessing decision-making capacity may be challenging as the nature and progress of each disease influences decision-making capacity in diverse ways. Persons with dementia represent a vulnerable population deserving special attention when developing, implementing, and evaluating the informed consent process. In this chapter, particular attention will be given to vulnerability categories and how these influence decision-making capacity. Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in clinical dementia research.

In addition, this chapter analyses important ethical challenges and issues in clinical dementia research. If handled thoughtfully, they would not pose insuperable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and cause harm to research participants. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the participants with dementia and protection of their vulnerabilities and rights.

A core set of ethical questions and recommendations are drawn to aid researchers, institutional review boards and potential research participants in the process of participating in clinical dementia research.

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

A case study methodology was applied as a major component of a mixed-methods approach to the evaluation of a mobile dementia education and support service in the Bega Valley Shire, New South Wales, Australia. In-depth interviews with people with dementia (PWD), their carers, programme staff, family members and service providers and document analysis including analysis of client case notes and client database were used.

The strengths of the case study approach included: (i) simultaneous evaluation of programme process and worth, (ii) eliciting the theory of change and addressing the problem of attribution, (iii) demonstrating the impact of the programme on earlier steps identified along the causal pathway (iv) understanding the complexity of confounding factors, (v) eliciting the critical role of the social, cultural and political context, (vi) understanding the importance of influences contributing to differences in programme impact for different participants and (vii) providing insight into how programme participants experience the value of the programme including unintended benefits.

The broader case of the collective experience of dementia and as part of this experience, the impact of a mobile programme of support and education, in a predominately rural area grew from the investigation of the programme experience of ‘individual cases’ of carers and PWD. Investigation of living conditions, relationships, service interactions through observation and increased depth of interviews with service providers and family members would have provided valuable perspectives and thicker description of the case for increased understanding of the case and strength of the evaluation.