The effects of stigma on quality of life and psychological outcomes in participants with varying reports of subjective cognitive decline.

Background: Diagnostic labels such as cognitive impairment, dementia or MCI often carry associated stigmatization. Stigma can lead to social isolation and rejection; increasing the likelihood of loneliness, depression, and anxiety. Depression and anxiety can be predictive of cognitive function; depression and anxiety are linked to stigma. Subjective cognitive decline (SCD) can be indicative of actual cognitive impairment. Subjective impairment and stigma can significantly predict quality of life. The aim of the proposed dissertation study was to explore whether higher SCD scores associate with more internalized stigma, and if this stigma mediates the relationship between SCD and depression, SCD and anxiety, and SCD and isolation scores. Methods: This sample was open to individuals aged 35-80 and consisted of individuals aged 35-78 years old with stratified age groups. One group consisted of adults aged 35-50 (n=43), one group consisted of adults aged 51-65 (n=118), and another aged 66-80 (n=58). This was a cross-sectional study collecting data from validated and continuously scaled measures. Correlational analyses were used to evaluate associative relationships. Originally, if significant relationships were found, mediation analyses would have been used to look at mechanistic relationships amongst stigma and quality of life. Results: The results showed that SCD was negatively associated with subjective age; however, these results were not statistically significant. The results also showed that SCD was positively correlated with stigma, even when controlled for age, sex, and race. Stigma was significantly and positively correlated with depression and anxiety, even when controlled for age, sex, and race. Stigma was not significantly correlated with loneliness or isolation. Bivariate correlations between depression and the quality of life were insignificant as well as all correlations between anxiety. Stigma and quality of life showed insignificant relationships. Loneliness and isolation relationships with quality of life were highly significant. Discussion: Higher SCD was associated with more stigma and stigma was associated with more depression, anxiety, but not loneliness and isolation. Despite these associations, there was no association with quality of life amongst the variables of interest, other than with loneliness and isolation and attitudes towards aging (AAS). Attitudes towards aging had significant relationships with stigma, quality of life, loneliness and isolation. More research into AAS would better assist in seeing how it affects other psychological variables. Given that stigma can impact health outcomes and can begin during early stages of cognitive change, further understanding into this stigma may aid in preventative measures. In the future, research into primarily older adults and more heavily weighted SCD reporting might offer more insight into how these key variables interact with one another and affect health outcomes

An experience-centred design led examination of the struggle for recognition in dementia care

The experience of advanced dementia has been largely excluded from design work in Human-Computer Interaction (HCI), as the experience itself is viewed as ‘unreachable’ in terms of design engagement. This thesis aims to examine the experience of living with dementia in the care home context, with a view to implementing methods of Experience-Centred Design (ECD) to examine the relational and agentic abilities of people with dementia, particularly in advanced dementia. In order to examine the experience of advanced dementia and understand the political and social implications of inclusion of people with advanced dementia in design, this thesis draws on the social theory of recognition, a theory which emphasises the need for mutual engagement as a means of developing and sustaining a self-identity. Used as the basis of a design framework, this theory suggests a series of sensibilities for design in this context, which are presented in chapter 2. This framework informs the empirical design work presented in chapters 4, 5 and 6 to examine the needs for reciprocity through design in dementia care, paying particular attention to the ways of engaging with the experience of advanced dementia. The initial ethnography, presented in chapter 4, focuses on the nature of communication, care and participation with people with advanced dementia, with a view to informing recognition-based design work. Findings suggest ways to further support moments of recognition in care and design, such as embodied communication, challenges in recognising the needs of people with advanced dementia and reconfiguring the role of people with advanced dementia in design. Informed by the findings of the ethnography, and with a view to increasing moments of recognition through design, intergenerational design work with student volunteers and residents in care is presented in chapter 5. Discussed are two case studies; Life Story Box and History Club. In these design projects, students worked with residents to explore their personhood and engaged in the co-design of artefacts which represented the individual and collective life story of the people with dementia. Findings suggest how best to support students and people with dementia in the design process, as well as some of the ethical implications of supporting co-design in this context. The final study culminated in the design and evaluation of ‘Printer Pals’, a receipt-based media producing technology to increase access to media and encourage social engagement in the care home setting. This iterative design process involved prototype development, evaluation and implementation in collaboration with researchers from Open Lab, Newcastle University. Findings discuss the use of design processes to support agency in care homes, and the role of technology in creating opportunities for positive social engagement and cohesion. This empirical design work, informed by the theory of recognition and methods of ECD, proposes an approach to designing with and for people with advanced dementia that supports and engages in their agentic social presence. Design work in this context presents an opportunity to position the person with advanced dementia as active in the dialogical process of meaning-making, as well as their own care practices. Reconfiguring the role of people with advanced dementia in relational and social processes, requires careful re-visiting of cultural and social notions of agency and mutuality, and how they have failed to consider the abilities of people with advanced dementia. Design has a central role to play in supporting these abilities, encouraging creative and meaningful care practices in order to honour the needs and rights of the person with dementia to shape a meaningful and connected lived experience

Designing a New Tactile Display Technology and its Disability Interactions

People with visual impairments have a strong desire for a refreshable tactile interface that can provide immediate access to full page of Braille and tactile graphics. Regrettably, existing devices come at a considerable expense and remain out of reach for many. The exorbitant costs associated with current tactile displays stem from their intricate design and the multitude of components needed for their construction. This underscores the pressing need for technological innovation that can enhance tactile displays, making them more accessible and available to individuals with visual impairments. This research thesis delves into the development of a novel tactile display technology known as Tacilia. This technology's necessity and prerequisites are informed by in-depth qualitative engagements with students who have visual impairments, alongside a systematic analysis of the prevailing architectures underpinning existing tactile display technologies. The evolution of Tacilia unfolds through iterative processes encompassing conceptualisation, prototyping, and evaluation. With Tacilia, three distinct products and interactive experiences are explored, empowering individuals to manually draw tactile graphics, generate digitally designed media through printing, and display these creations on a dynamic pin array display. This innovation underscores Tacilia's capability to streamline the creation of refreshable tactile displays, rendering them more fitting, usable, and economically viable for people with visual impairments