Exploring the whole family experience living with younger onset dementia from a social model perspective

Social inequalities were identified as being experienced by individuals living with all types of impairments. However, those living with cognitive impairments under 65 years, were identified as being less understood by society, and associated with experiences of significant discrimination. The following Chapter 3; Feeling invisible and ignored: families experiences of marginalisation living with younger onset dementia explored from a social model perspective, the social factors which impact on the experiences of families living with YOD, including children and young people. In Chapter 3, our attention was drawn to the negative impact of society’s response and attitudes, adding to the marginalisation of families - affecting their relationships and ability to function together. The consequences of these lived experiences for children and young people having a parent with YOD, was highlighted as a gap in the research literature. The subsequent Chapter 4: The emotional well-being of young people having a parent with younger onset dementia looked at the societal influences on the emotional well-being of these children and young people from the perspective of the social model of disability. Chapter 4 confirms the ongoing emotional distress faced by children and young people at a particularly challenging time in their own lifecycle. The authors then delved further in an attempt to make sense of their lived experiences, having a parent with younger onset dementia. The outcome of this research resulted in Chapter 5: Empowerment of young people who have a parent living with dementia: a social model perspective, which considered what social factors, could facilitate better support and social inclusion for these children and young people. At this juncture the research demonstrated YOD impacts the whole family unit, thus highlighting the need for greater social inclusion, societal acceptance and enablement. Tailored formal services and support to address the complex and challenging needs of all family members, an area that has had little focus in the research literature, needed further exploration. This challenge was undertaken in Chapter 6: Co-creation of a family-focused service model living with younger onset dementia using the combined perspectives of the social model of disability and the family systems illness model. Bringing together the viewpoints of healthcare and service providers with all family members was critical to making sense of the multifaceted societal challenges faced in providing and receiving age-appropriate services. A theoretical framework was proposed as the basis for a co-created, family-focused service model. VI Conclusion: Throughout this thesis the common theme that has linked these chapters together, from the perspective of the social model of disability, has been the lack of understanding and largely unmet needs of people living with YOD and their family members. Experiences of socially constructed disablement impacts family function, relationships and connectedness. Hence, looking through the social model lens in relation to dementia allows us to see things differently, to redirect attention away from a diagnosis, personal tragedy, and disablement; and instead to focus on choice, control and enablement of the whole family. The proposed co-created, family focused service model could provide the foundation for developing social model principles to service policies and practices through greater cooperation, communication and learning between service users, service providers and stakeholders. With the aim to change societal views, and improve understanding and social inclusion, thereby enabling the whole family to feel valued and live well with dementia

Transitioning Community Food Systems for Sustainability and a Proposed Caledon Community Food Plan to Foster a Successful Resilient Local Food Economy

Communities have become a promising place to work sustainability transitions. As the world has become increasing complex, it is no longer possible to use linear thinking to deal with the massive problems facing us. From hunger to obesity to poverty to climate change and inequality, the food system connects us all and it is a productive place to work on these issues. Community food systems are ripe for transition. While the local level has the fewest policy tools and financial levers for change, it is where people are engaged and willing to work on issues that affect them most. This project explores the theoretical, conceptual lessons form systems thinking and dynamics, complexity science, sustainability transition frameworks and community building. The lessons are further enhanced with lessons from the field. The theoretical and practical foundations are triangulated to develop new transition tools for community food systems to transition to sustainability. These transition tools linked to form a transition pathway for community food systems. Then, using the real life case example of Caledon Ontario, a proposed start at using these tools is investigated and formulated as a way to engage the municipality, business and others in this work

The emotional well-being of young people having a parent with younger onset dementia

Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.Doris Whiting Trust Fun

Empowerment of young people who have a parent living with dementia: a social model perspective

Objectives: Socially constructed disablement has marginalised young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper we explored the young people’s lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community. Methods: In this qualitative research study the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants. Results: Three themes emerged; invisibility highlighting the issues of marginalisation; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed. Conclusion: The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members

Identifying Highly Connected Counties Compensates for Resource Limitations when Evaluating National Spread of an Invasive Pathogen

Surveying invasive species can be highly resource intensive, yet near-real-time evaluations of invasion progress are important resources for management planning. In the case of the soybean rust invasion of the United States, a linked monitoring, prediction, and communication network saved U.S. soybean growers approximately $200 M/yr. Modeling of future movement of the pathogen (Phakopsora pachyrhizi) was based on data about current disease locations from an extensive network of sentinel plots. We developed a dynamic network model for U.S. soybean rust epidemics, with counties as nodes and link weights a function of host hectarage and wind speed and direction. We used the network model to compare four strategies for selecting an optimal subset of sentinel plots, listed here in order of increasing performance: random selection, zonal selection (based on more heavily weighting regions nearer the south, where the pathogen overwinters), frequency-based selection (based on how frequently the county had been infected in the past), and frequency-based selection weighted by the node strength of the sentinel plot in the network model. When dynamic network properties such as node strength are characterized for invasive species, this information can be used to reduce the resources necessary to survey and predict invasion progress

Identification of clinical factors predicting warfarin sensitivity after cardiac surgery

Objectives: Warfarin is commonly initiated post-cardiac surgery to reduce the risk of intra-cardiac thrombus formation.Studies have found that sensitivity is increased after cardiac surgery and anti-coagulation is subsequently difficult to manage.This study set out to identify clinical markers of increased warfarin sensitivity in patients’post-cardiac surgery, and build a modelthat can predict warfarin sensitivity, and improve safety in this setting.Methods:The study was an observational, retrospective cohort design.Clinical parameters including Left Ventricular Ejection Fraction (LVEF), cross-clamp time, age, serum albumin and C-reactive protein concentrations were collected from consenting patients who had undergone cardiac surgery and prescribed post-operative warfarin. Warfarin Dose Index (WDI) was calculated for each patient from their INR and warfarin dose, as a measure of sensitivity.Results:41 patients were recruited to the study.Logarithmically transformed WDI (log WDI) significantly correlated with LVEF, cardiopulmonary bypass (CPB) time, cross-clamp time, baseline INR and co-administration of amiodarone (p<0.05).When added to a linear regression model, LVEF and cross-clamp time produced a model that accounted for 41% of variance in log WDI (R2=0.41), p=0.0002).Applying a log WDI cut-off value of -0.349 discriminated between patients who develop an INR >4 and those who do not with a sensitivity of 75% and a specificity of 70%.Conclusions:This single centrestudy has highlighted two risk factors for increased warfarin sensitivity post-cardiac surgery.Further research is needed to confirm these findings in a wider, more diverse population, and to validate this model

Comparison of Gait During Treadmill Exercise While Supine in Lower Body Negative Pressure (LBNP), Supine with Bungee Resistance and Upright in Normal Gravity

The purpose of this study is to compare footward forces, gait kinematics, and muscle activation patterns (EMG) generated during supine treadmill exercise against LBNP with the same parameters during supine bungee resistance exercise and upright treadmill exercise. We hypothesize that the three conditions will be similar. These results will help validate treadmill exercise during LBNP as a viable technique to simulate gravity during space flight. We are evaluating LBNP as a means to load the musculoskeletal and cardiovascular systems without gravity. Such loading should help prevent physiologic deconditioning during space flight. The best ground-based simulation of LBNP treadmill exercise in microgravity is supine LBNP treadmill exercise on Earth because the supine footward force vector is neither directed nor supplemented by Earth's gravity