André Smith

Personhood in dementia care Developing a research agenda for broadening the vision

Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interactions and social contexts. This evidence shifts attention from the disease process to the need for a more in-depth understanding of the place of personhood in dementia care. Despite its intuitive appeal however, there is limited empirical research grounding this approach to care. This article articulates a framework for organizing research in this area that is based on a critical review and synthesis of research. It encompasses three interrelated and intersecting domains of inquiry: the subjective experience of the person with dementia, the immediate interactional environment and the broader socio-cultural context. Each domain encapsulates a unique but interrelated dimension of a person-centred approach to dementia care.

Caregiver Well-Being: Intersections of Relationship and Gender.

We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem.

Beyond folk devil resistance: Linking moral panic and moral regulation

This article is a contribution to widening the focus of moral panic studies. Our aim is to advance recent attempts to link moral panic studies to the criminological literature on moral regulation. We argue that moral panics should be conceptualized as volatile expressions of long-term moral regulation processes. To substantiate these conceptual and theoretical arguments, we examine claims-making activities about the threat posed by British youth who don hooded tops in public places.

The Influence of Culture on the Oral Health-Related Beliefs and Behaviours of Elderly Chinese Immigrants: A Meta-Synthesis of the Literature

Neglect of the mouth can lead to impairment, disability, and discomfort; as a result, it can have a negative impact on quality of life in old age. Some minority groups in North America shoulder a disproportionate burden of dental impairment compared to people of European origins, possibly because of different cultural beliefs and a distrust of Western oral healthcare. This paper explores these factors in elderly Chinese immigrants through a meta-synthesis of selected literature that reveals a dynamic interplay of traditional Chinese beliefs about oral health, immigration, and structural factors mediating access to Western dentistry. It also identifies several conceptual issues and gaps in knowledge, offers avenues of research including the cross-cultural application of two recent models of oral health, and discusses various strategies for improving access to dental services for minority populations.

Obstetric complications and severity of illness in schizophrenia

A history of obstetric complications (OCs) is common in schizophrenia and may lead to a severe form of the disorder. In order to test this possibility, three questions were identified: (1) Is a history of OCs in schizophrenia common in patients with a severe form of illness? (2) Do patients with OCs have more impaired function, greater severity of illness, and poorer treatment outcome than those with no identified OCs? (3) Are OCs associated with an early age at onset of illness? Obstetric history, clinical indices of functioning, and illness severity were obtained for 83 severely ill patients with schizophrenia. The proportion of patients with a history of OCs was greater in this study than has been reported previously. Subjects with a history of OCs had better functioning than those with no OCs at the time of admission but no group differences were found at discharge. No difference in age at onset of illness was found between patients with and without an OC history.

Making Sense of Alzheimer’s Disease in an Intergenerational Context The case of a Japanese Canadian nisei (Secondgeneration)-headed family

An appraisal of cultural values and life history events is necessary to fully understand the ways in which family members interpret the significance of cognitive symptoms and make decisions about accessing clinical services for a relative in the early to moderate stages of dementia. This article presents a case study of a nisei (secondgeneration)-headed Japanese Canadian family in which the father was referred for clinical evaluation at a dementia clinic and diagnosed with Alzheimer’s disease. This case study identifies the traditional issei (first-generation) Japanese Canadian values of filial obligation and shame and awareness of the father’s life history as salient mediators in family members’ interpretations of dementia symptoms. Furthermore, a discussion of the role of the clinical evaluation in arbitrating between divergent interpretations of the nature of the father’s disruptive behavior among family members is included.

Oral healthcare challenges for older Punjabi-speaking immigrants.

Cette étude a exploré comment les immigrants âgés d’origine sud-asiatique, parlant le pendjabi (quatre groupes de discussion; 33 participants) de Surrey en Colombie-Britannique, perçoivent leur santé buccale et les problèmes connexes. L’analyse a relevé deux thèmes généraux: les interprétations de la condition bucco-dentaire et les défis de santé buccodentaire. Le thème des interprétations avait quatre sous-thèmes: les dommages causés par le wai, les perturbations causé par la carie, l’adaptation aux prothèses dentaires, et qualité de vie; alors que le thème des défi s considérés: remèdes à domicile, dentisterie occidentale; et difficultés d’accès aux dentistes. Les participants ont expliqué les maladies buccodentaires en termes d’une infection systémique (resha) et ont dit préféré les remèdes faits maison pour diminuer les écarts de chaleur (wai) dans la bouche. Nous concluons que les immigrants âgés d’origine sud-asiatique parlant le pendjabi interprète la santé et les maladies bucco-dentaires dans un contexte mixte de traditions occidentales et Ayurvédique, et gèrent leur santé buccale au moyen de remèdes traditionnels faits maison, complémentés au besoin par des soins d’urgence dispensés au Canada.This study explored how older Punjabi-speaking South-Asian immigrants (four focus groups; 33 participants) in Surrey, British Columbia, perceive oral health and related problems. Content analysis revealed two umbrella themes: (a) interpretations of mouth conditions and (b) challenges to oral health. The umbrella themes had four sub-themes: damage caused by heat (wai), disturbances caused by caries, coping with dentures, and quality of life. Three challenges were considered: home remedies, Western dentistry, and difficulties accessing dentists. Participants explained oral diseases in terms of a systemic infection (resha), and preferred to decrease imbalances of wai in the mouth with home remedies from India. We conclude that older Punjabi-speaking immigrants interpret oral health and disease in the context of both Western and Ayurvedic traditions, and that they manage dental problems with a mix of traditional remedies supplemented, if possible, by elective oral health care in India, and by emergency dental care in Canada.

Post Your Journey: Instagram as a Support Community for People With Fibromyalgia

Fibromyalgia is a chronic illness with primary symptoms of widespread pain and fatigue. Social media applications have become a recent resource allowing individuals with fibromyalgia to interact in a virtual community devoted to the illness. This study explores how such a community develops and maintains itself on Instagram and the ways it creates social capital for its users. Data are derived from Instagram posts and open-ended questionnaires completed by users living with fibromyalgia who use the application. Using content analysis and semiotic methodology, the study analyzes the diverse ways in which users shared their experiences with fibromyalgia, the management of its symptoms, and issues encountered in accessing health care systems. Instagram aids in the development of a community by facilitating intimate and supportive interactions about the illness and the creation of personalized day-to-day narratives accessible to all. Norms of trust, acceptance, and reciprocity characterize the diversity of interactions in this community.

Self-Induced Water Intoxication in a Psychiatric Asylum: A Case Study of Diagnostic Categorization and Regulation

In this article, we examine the regulation of psychiatric patients becoming intoxicated from drinking excessive amounts of liquids at a large psychiatric asylum in Canada. We analyze how medical staff created a formalized diagnostic category and a specialized ward for its treatment. We consider the institutional context in which “water intoxication” was developed as a diagnostic category and we examine the impact of this diagnosis on the regulation of asylum patients. Finally, we discuss the patients’ opposition to treatment as well as the impact of “water intoxication” on their self-identity and institutional status.

Examining the discontinuation of cholinesterase inhibitor therapy from the perspectives of Alzheimer's disease caregivers and physicians

not available. ORAL SESSIONS: O3-01 SOCIAL-BEHAVIORAL AND CARERESEARCHAND PRACTICE: MEDICATION USE, HOSPITALIZATION AND DEPENDENCE O3-01-01 EXAMINING THE DISCONTINUATION OF CHOLINESTERASE INHIBITOR THERAPY FROM THE PERSPECTIVES OFALZHEIMER’S DISEASE CAREGIVERS AND PHYSICIANS Andre Smith, Karen Kobayashi, Neena Chappell, Department of Sociology, University of Victoria, Victoria, British Columbia, Canada; University of Victoria, Victoria, British Columbia, Canada. Background: Cholinesterase inhibitors (ChEIs) are now widely prescribed first-line drugs in the treatment of mild to moderate Alzheimer’s disease and related dementias (ADRD).Yet, there is inconsistent evidence about the benefits of these drugs and howbest to determine their effectiveness, particularly when these drugs are prescribed over the long term. The issue of when to discontinue ChEI drugs is thus complex and subject to much debate. Against this backdrop, the experiences of prescribing physicians and family caregivers have been largely ignored even though it has been recognized that discontinuation of this drug treatment may have significant implications for quality of life. Methods: This study presents qualitative data from 26 in-depth interviews with caregivers to persons with ADRD who were withdrawn from drug therapy or were in the process of beingwithdrawn. Additionally, 19 family physicians participated in four focus groups about their prescribing practices. Results: The findings reveal that the decision to discontinue ChEIs involves a complex interplay between caregiver appraisal of the benefits of ChEIs and physician interpretation of ambiguous psychometric findings in the assessment of treated patients. Once treatment began, physicians took their lead from caregivers as to how long to continue prescribing a ChEI even in instances where prescribingmight have been contraindicated on the basis of continued poor performance on psychometric testing. Caregivers offered rich narratives about discontinuation being a source of anxiety and conflict within the family, with siblings often disagreeing on the benefits of ChEIs. Caregivers tended to view ChEIs as the last line of defense against the loss of self and felt obliged to continue with treatment despite uncertainty about its effectiveness. The decision of the physician to stop prescribing a ChEI almost always occurred in instances of severe adverse reactions or when institutionalization could no longer be delayed. Conclusions: The study’s findings suggest a need for developing “best practice” guidelines to assist physicians and other health care professionals in supporting caregivers and care recipients with the process of ChEI discontinuation. Such initiatives could potentially reduce the costs of funding these drugs and improve the quality of life of caregivers and care recipients. O3-01-02 HOW DOES THE USE OF MEDICATIONS FOR DEMENTIA MANAGEMENT INFLUENCE COGNITION AMONG NURSING HOME