Exploring why "memory loss" is a misleading descriptor of people living with dementia and can lead to dysfunctional care.

Amidst goals for prevention and improved treatment for people living with dementia, much remains needed to enhance the quality of life of those currently diagnosed, especially the transfer of accurate information from professionals to the public. Although many healthcare professionals understand the various types of memory and which are likely to be more affected than others during the progression of dementia, lay persons are more frequently unaware of that important information. The terms used to describe the symptoms of dementia can have a great impact on perceptions of faculties that are absent, compromised, or preserved. Understanding the nuances of preserved memory faculties and other cognitive abilities retained by persons with dementia is important in this regard. The term "memory loss" as a descriptor of the syndrome of dementia and ascribing it to persons with dementia connotes an inability to form new memories and participate in meaningful social interactions, which is detrimental to their personhood. From a multidisciplinary approach drawn from neurology, neurobiology, psychology, and case vignettes, we aim herein to highlight the ways in which the term "memory loss" can be inaccurate, counterproductive and potentially promote dementia-related misperceptions, malignant positioning and malignant social psychology. Persons with dementia unequivocally struggle with explicit memory, or recalling on demand, but retain implicit memory, as evidenced by research and everyday actions. Therefore, we propose the use of alternative medical language to reflect accurately memory impairment and preservation of some important memory capabilities.

A person-centered framework for designing music-based therapeutic studies in dementia: current barriers and a path forward.

Objectives: Music-based interventions have received growing attention to improve quality of life for people diagnosed with dementia. Results of randomized controlled trials and meta-analytic reviews to date, however, reveal a lack of conclusive evidence for or against the effectiveness of such interventions. Herein, we critically review the basic assumptions and methodological issues ingrained in the cultures of research and care as they relate to evaluating music-based treatments for people with dementia, and propose a shift in the methodology by which music interventions are empirically evaluated.Method: We begin by reviewing existing barriers to achieving clarity on the effectiveness of music interventions, and we highlight methodological and sociocultural constraints that have limited our ability to reach concrete conclusions in research studies to-date. We then consider several key factors that have demonstrated relevance in matching people to specific music-based interventions. Based on these key factors, we developed a person-centered framework integrating elements from precision-medicine methodology to guide intervention studies.Results: Our organizing framework systematically integrates the following factors to inform the design of intervention studies: 1) person-centered goals and desired outcomes; 2) differences among individuals in clinical, cognitive, and historical attributes; and 3) the context of intervention and access to resources.Conclusion: Integration of the proposed framework into empirical investigations of music interventions for people living with dementia will inform precise and tailored interventions that will bring clarity to this growing body of research. Another aim of this framework is to foster a more humane, person-centered approach to our culture of care.

Dementia Beyond Pathology: What People Diagnosed Can Teach Us About Our Shared Humanity.

In this article, I explore how methods of investigation can allow us either to appreciate the intact cognitive and social abilities of people with Alzheimer's disease or unwittingly obscure those same abilities. Specifically, I shall assert that (1) the biomedical- quantitative approach, while being generally appropriate for drug efficacy studies, does not allow us to appreciate the many significant strengths possessed by people diagnosed with dementia, (2) qualitative/narrative approaches do so admirably, and (3) understanding the cognitive and social strengths of people diagnosed is of paramount importance for developing optimal care giving approaches and reveals strikingly the shared humanity of those diagnosed with dementia and those deemed healthy.

The 'demented other' or simply 'a person'? Extending the philosophical discourse of Naue and Kroll through the situated self.

This article presents a critique of an article previously featured in Nursing Philosophy (10: 26-33) by Ursula Naue and Thilo Kroll, who suggested that people living with dementia are assigned a negative status upon receipt of a diagnosis, holding the identity of the 'demented other'. Specifically, in this critique, we suggest that unwitting use of the adjective 'demented' to define a person living with the condition is ill-informed and runs a risk of defining people through negative (self-)attributes, which has a deleterious impact upon that person's social and relational personae. Moreover, use of the locution 'demented' reinforces a divide between the 'demented' (them) and the 'healthy others' (us). Social constructionist theory, malignant positioning and viewing people with dementia as semiotic subjects are the philosophical pillars through which we construct the main arguments of the critique. The article concludes with the voice of one of the authors, a younger person with dementia, asking for language in dementia care to be carefully reconsidered and reframed and for the recognition of the diagnosed person's agency in the conduct of their day-to-day lives.

Capacity for decision-making in Alzheimer's disease: selfhood, positioning and semiotic people.

The aim of this article is to explore some of the ethical issues surrounding the assessment and determination of capacity of people with dementia in light of their meaning-making ability as shown through discourse. Discourse analysis, two illustrative cases, social construction theory and positioning are used to highlight some of the ethical dilemmas involved in basing a determination of capacity on the diagnosis of dementia and neuropsychological tests of cognitive function. Although neuropsychological tests have their place in assessing some aspects of cognitive function, aspects cognition such as meaning-making ability and selfhood cannot be assessed in a standard format. In dementia, there can be a differential impairment of recall memory while the personality, values and substantial long-term memory remain intact, as does implicit memory for recent events. People with dementia are vulnerable to being negatively positioned, thereby unfairly undermining their rights to make decisions about aspects of their lives. Assessing the capacity of a person with dementia to engage in decision-making is presently in need of examination so as to take into account the person's meaning-making ability and selfhood. Incorrect negative positioning, based on the diagnosis and defects in recall memory, can obscure intact cognitive abilities that allow a person to make decisions about aspects of living, creating the possibility of lasting harm being inflicted on the person with dementia.

Barriers to the construction of a valued social identity: a case study of Alzheimer's disease.

This case study describes a person with mild-to-moderate stage Alzheimer's disease (AD) and examines the relationship between malignant positioning and the ability of a person with AD to gain the cooperation of healthy persons to construct a valued social identity. Findings reveal that malignant positioning limited the person with AD to the embarrassing social identity of dysfunctional patient; whereas, the absence of such positioning allowed the subject to gain the cooperation from others necessary to construct a valued social identity, as well as reduce embarrassment and experience greater sense of self-worth. Preliminary recommendations on reducing malignant positioning are provided. Further research is required to elucidate the degree to which the present findings may be generalized.