Personal Constructs in Dementia Caregiving: The Family Caregiving Experience of People Living with Dementia in Saudi Arabia

As observed globally, family (informal and in-home) caregiving of older adults with Alzheimer’s disease or other forms of dementia has become a critical issue in the Arab region, including Saudi Arabia. This doctoral research psychometrically and conceptually evaluates an Arabic version of the Montgomery Borgatta Caregiver Burden Scale for use as a measurement tool to assess family caregivers of older adults living at home with dementia in Saudi Arabia. Currently, there is no published literature that addresses family caregiving for individuals with dementia in Saudi Arabia. Through further examination of family caregiving narratives, this research maps the personal and social construing of the family caregiver role of older adults with dementia in Saudi Arabia. This doctoral research is guided by the theoretical framework and philosophical understanding of personal construct theory and employs an integrated mixed methods approach to data collection, analysis, and interpretation of findings from 20 Saudi Arabian family caregivers. The research is presented in five chapters, including three individual manuscripts and introduction and conclusion chapters. The first manuscript introduces personal construct theory with its underlying philosophy, fundamental concepts, and methods of assessment as a potential constructivist research approach to examine the personal, familial, group, and cultural construct systems that shape the context of dementia care within and across cultures. The defined gap in the first manuscript led to a mixed methods study to examine the construction of Western-based existing measure of “caregiver burden.” The second manuscript, therefore, examines the items of the Montgomery Borgatta Caregiver Burden Scale and the construct of caregiver burden using the repertory grid technique and laddering procedure—the two constructivist methods derived from personal construct theory—to identify culturally sensitive items of the scale in the target cultural context of Saudi Arabia. Alongside the conceptual and psychometric evaluation of scale items, the third manuscript further examines family caregivers’ daily narratives and personal and cultural constructs that shape their caregiver role. This research contributes to the international literature of family gerontology and research on caregiver assessment. It elaborates the assessment methods of personal construct theory to expand alternatives for research methodologies of measurement evaluation and validation. The research also promotes the therapeutic approaches of personal construct theory and other practical implications for the development of support programs for family caregivers and recommends an integrated system for health and social services and a national strategy for dementia care in Saudi Arabia

Shelter and care of persons with dementia

TABLE OF CONTENTS: INTRODUCTION; PART I: SPECIALIZED CARE IN INSTITUTIONAL SETTINGS: 1. Basic Facts and Figures about Dementia Patients in Institutions / Kimberley L. McEwan, David Maxwell and Gloria M. Gutman; 2. Characteristics of Six Special Care Units in British Columbia / Gloria M. Gutman and Judy Killam; 3. Comparison of Care Practices for Persons with Dementia Living on and Outside Special Care Units in Ontario\u27s Homes for the Aged / Darlene Flett and Christine K Davis; 4. Le Chez Nous : Accommodation with a Difference for Cognitively Impaired Persons in Rural Manitoba / Ulysses Lahaie and Jacqueline Theroux. PART II: BEHAVIOURAL INTERVENTIONS AND ENVIRONMENTAL DESIGN ISSUES: 5. Non-pharmacological Approaches to Management of Patient Behaviour: A Focus on Behavioural Intervention for Depression in Dementia / Linda Teri; 6. Behaviour and Use of Space by Residents of Special Care and Integrated Nursing Home Units / Allen R. Dobbs and Brendan G. Rule; 7. Wandering Tracks: Environmental Strategies That May Work Too Well / Doris L. Milke; 8. Designing Facilities for People with Dementia: A New Resource for Planners and Caregivers / Thomas J. Lips. PART III: INSTITUTION - COMMUNITY COOPERATION AND COLLABORATION: 9. The Organization and Coordination of Psychiatric Services for the Elderly in an Urban Setting / Kenneth I. Shulman and Carole A Cohen; 10. Organization and Coordination of Services to Individuals with Dementia Living in Rural Settings / Connie J. Sarchuk and Peter Wiebe; 11. The Bethania Special Care Resource Team / L Craig Turner and Barbara J. Graham. PART IV: FACILITATING SHELTER AND CARE AT HOME: 12. Adapting the Home to Meet the Needs of Persons with Dementia and Their Family Caregivers / Nancy Gnaedinger; 13. The Alzheimers\u27 Family Care Centre - Daycare with a Difference / Laurie-Anne Keith and Deborah Rutman; 14. Respite Care: What Are the Options? / DouglasH. Rapeije

An investigation of the efficacy of training care home staff in a formulation based functional analysis approach to understanding stress and distress behaviours with dementia

Objectives: The aim of this study was to evaluate the outcome of a package of evidencebased person-focused training for formal carers working with people with dementia living in care homes. Specifically evaluating the efficacy of a new Formulation based Functional Analysis (FFA) approach to understanding stress and distress behaviours (SAD-behaviours) with dementia. Design: The study employed an open trial design, with three independent groups: two training interventions and a waiting list control. Method: Forty eight care staff were recruited from care homes across Cambridgeshire. Participants in intervention group one attended 15 hours of training (CAMTED), participants in intervention group two attended 21 one hours of training including a FFA module in understanding SAD-behaviours (CAMTED-Plus). The waiting list control consisted of staff waiting to receive training. All participants completed outcome measures on knowledge and attitudes to dementia, burden, job satisfaction and perceived frequency of SAD-behaviours and confidence in managing SAD-behaviours at baseline and post-intervention. Results: Due to the small sample size the waiting list group was excluded from data analyses. Results showed that there were no statistically significant differences between CAMTED and CAMTED-Plus on any of the outcomes at the end of the intervention. Within-group analyses of pre-post change found statistically significant differences for CAMTED in the degree of hopefulness about dementia and CAMTED-Plus in attitude to dementia, extent to which a person-centred approach is adopted and levels of depersonalisation. Positive feedback was provided on the use of the jigsaw training tool and verbal feedback indicated participants’ positivity about the training. Conclusion: The results provide preliminary support for the utility of the FFA approach as a training intervention. Although the results are limited due to the methodological shortcomings, they provide a range of evidence in support of the FFA approach, which may be built on in the future

Faciliter les échanges avec les personnes vivant avec un trouble de la communication : une formation pour les chauffeur·e·s de transport adapté

La communication avec les proches, tout comme celle avec des interlocuteur·trice·s non famili·ère·s comme le personnel à l’épicerie ou à la pharmacie, est au centre de nombreuses activités qui permettent d’exercer une participation sociale satisfaisante. Or, pour réaliser une société inclusive, des adaptations humaines sont essentielles pour les personnes vivant avec un trouble de la communication. En effet, les interactions difficiles avec les individus rencontrés dans leur(s) communauté(s) pourraient restreindre leur participation sociale. Notamment, leur accès au transport collectif semble freiné par les attitudes et habiletés de communication du personnel. Considérant le rôle clé des transports collectifs dans la participation sociale, cette thèse présente un projet de recherche qui a pour ambition d’améliorer les échanges entre les chauffeur·e·s de transport adapté et les passager·ère·s du service vivant avec un trouble de la communication. Une formation des partenaires de communication, une intervention orthophonique visant à outiller des interlocuteur·trice·s à mieux interagir avec des personnes vivant avec un trouble de la communication, a été développée spécialement pour les chauffeur·e·s de transport adapté d’une société de transport public d’une grande ville québécoise. Son développement a été encadré par un modèle provenant du domaine de l’éducation aux adultes, le modèle andragogique de processus d’apprentissage. La formation intitulée Pour une communication inclusive dans les transports publics a été offerte à treize chauffeur·e·s de transport adapté. Ses effets sur les chauffeur·e·s ont été explorés avec un devis exploratoire à groupe unique. La première étude de la thèse consiste en une revue de la portée. Elle décrit les écrits scientifiques sur la formation des partenaires de communication destinée à des travailleur·euse·s ou des interlocuteur·trice·s non familier·ère·s visant à améliorer la communication avec des personnes vivant avec un ou plusieurs troubles neurologiques acquis de la communication. Les constats de cet article sont que la majorité des formations des partenaires de communication abordent un seul trouble de la communication et qu’elles sont principalement offertes à du personnel ou des étudiant·e·s du domaine de la santé. Malgré une variabilité dans les mesures utilisées pour évaluer les effets de ces formations, les résultats rapportés étaient prometteurs pour améliorer les interactions entre les personnes formées et les individus vivant avec un trouble de la communication. La deuxième étude de la thèse explore l’utilité du modèle andragogique de processus d’apprentissage. L’étude souligne que le modèle s’est avéré utile pour développer, déployer et évaluer une formation en milieu de travail qui a semblé être appréciée des participant·e·s, et ce bien que la majorité des éléments du modèle ait été adapté pour répondre aux contraintes organisationnelles. L’étude souligne que l’appréciation des besoins d’apprentissage, l’établissement d’une ambiance de bienveillance, d'acceptation, de confiance et de respect propice à l’apprentissage ainsi que le choix des méthodes de formation semblent constituer des éléments clés du modèle. La troisième étude explore les effets de la formation sur treize chauffeur·e·s de transport adapté. Après avoir été formé·e·s, les chauffeur·e·s semblent avoir plus de connaissances sur la communication avec une personne vivant avec un trouble de la communication. De plus, l’analyse des vidéos des déplacements de passager·ère·s vivant avec un trouble de la communication par les chauffeur·e·s-participant·e·s révèle que ces dernier·ère·s ont amélioré leur communication relationnelle et ont augmenté le nombre de gestes utilisés avec ces passager·ère·s. La présente thèse soutient qu’une formation des partenaires de communication basée sur des théories de l’éducation aux adultes a le potentiel d’améliorer les échanges entre les chauffeur·e·s de transport adapté et les personnes vivant avec un trouble de la communication. Elle pose les bases pour d’autres études qui devront, elles, tâcher d’évaluer l’efficacité et de comprendre davantage les effets de formations similaires. Cette thèse réaffirme l’importance des recherches sur les formations des partenaires de communication, car celles-ci représentent une intervention prometteuse pour réaliser une société plus inclusive à l’égard des individus vivant avec un trouble de la communication.Communicating with family and friends, as well as with unfamiliar partners such as grocery store or pharmacy staff, is at the heart of many activities that enable satisfactory social participation. However, to achieve an inclusive society, human adaptations are essential for people living with a communication disability. Indeed, difficult interactions with individuals encountered in their community(ies) could restrict their social participation. In particular, their access to public transportation seems to be hindered by staff attitude and communication skills. Considering the key role of public transport in social participation, this thesis presents a research project that aims to improve interactions between adapted transport drivers and their passengers living with a communication disability. A communication partner training program, a speech-language pathology intervention aiming to train communication partner to better interact with people living with a communication disability, has been developed specifically for drivers of an adapted transport service in a large Quebec city. Its development was guided by a model from the field of adult education, the andragogical process model for learning. The training entitled Accessible Communication in Public Transportation was offered to thirteen adapted transport drivers. Its effects on the drivers were explored using an exploratory single-group design. The first study of the thesis is a scoping review. It describes the scientific literature on paid worker and unfamiliar partner communication training aiming to improve communication with people living with one or more acquired neurogenic communication disorders. The findings of this study are that the majority of communication partner training programs are disorder-specific and that they are mainly offered to health care staff or students. Despite variability in the measures used in the studies, the reported effects were promising for improving interactions between the people trained and individuals living with a communication disability. The second study of the thesis explores the usefulness of the andragogical process model for learning. The study points out that the model is useful for developing, delivering, and evaluating a workplace training that seemed to be appreciated by participants, even though the majority of the model's elements were adapted to meet organizational constraints. The study also points out that the assessment of learning needs, the establishment of an atmosphere of caring, acceptance, trust and respect conducive to learning, and the choice of training methods appear to be key elements of the model. The third study explores the effects of the communication partner training on thirteen adapted transport drivers. After being trained, the drivers appeared to have more knowledge about communicating with a person living with a communication disability. In addition, analysis of videos of the travel of passengers living with a communication disability by the driver-participants reveals that the drivers improved their relational communication and increased the number of gestures used with these passengers. This thesis suggests that a communication partner training based on adult education theories has the potential to improve interactions between adapted transport drivers and people living with communication disabilities. It lays the groundwork for further studies to evaluate the effectiveness and understand further the effects of similar trainings. This thesis reaffirms the importance of research on communication partner training as a promising intervention to realize a more inclusive society for people living with communication disabilities

Handbook of Life Course Health Development

Health development science; Developmental origins of chronic illnesses; Community; Diabetes; Autism; Obesity; Nutrition; Health disparities across the lifespan; Fetal programmin