The map of me: caring through clothing. An empathic co-design, art-based intervention that explores personhood through garments of significance for people living with dementia

A thesis submitted in partial fulfilment of the requirements of the University of Wolverhampton for the degree of Doctor of Philosophy.This thesis demonstrates the research process of an ecopsychosocial intervention called the ‘Map of Me: Caring Through Clothing’ (MoM), which uses garments of significance as a trigger to excavate the lived experience of people living with dementia. The global prevalence of dementia is over 50 million and is set to rise to 152 million by 2050 (Alzheimer’s Disease International, 2021). People who live with dementia often live at home and are cared for by primary carers, or they live in specialised care facilities with trained staff. There is currently no cure available for most types of dementia (Alzheimer’s Disease International, 2020). The research sits within the qualitative and art-based research methodology traditions, using inductive reasoning and mixed methods for data collection, which includes observation, case study, narrative, workshops and drawing. The work is informed by practice, specifically three iterations of the MoM process, to co-create forward interventions to be considered for the future care of the person living with dementia (PLWD) and their primary carer. It is a novel empathic co-design framework that weaves best practice nursing and dementia care, using items of significant clothing to excavate lived experience. This thesis illustrates how lived experience drawn from narratives instigated by significant garments contributes to an exploration of self, personhood and the interrelationship between a PLWD and their primary carer. Further, it uses art-based research methods of drawing, reflective writing and object excavation to uncover intangible and tangible understandings of everyday human interactions with garments. It positions the person at the heart of their own ‘ecosystem’, surrounded by meaningful interrelationships and objects within their environment. The Map of Me: Caring Through Clothing framework has been co-designed and tested over time with the participants. A set of procedures, resources and recommendations has been formulated as a result of the research.CADR

Exploring the significance of clothing to people with dementia using sensory ethnography

The World Health Organisation has identified the challenge of caring for those with dementia to be made a public health priority. Increasingly, literature from dementia care advocates creative approaches to aid those with dementia to live well. Greater importance is being placed on the significance of the physical and social aspects of dementia care environments. Whilst material and textile objects are used within the care of people with dementia, limited research has explored clothing within dementia care settings. Therefore, the research aims were to investigate the relationship between people with dementia and their clothing, by exploring the embodied and sensorial experience of clothing during wear to examine the potential of clothing in the care of people with dementia. The research design was shaped by my background in fashion textile design and psychology, and employed a sensory ethnographic (SE) approach. SE draws on traditional ethnographic methods, such as observation and interviews, whilst employing less conventional techniques which involve, for example, designing an activity for (or with) participants. This project employed the use of sensory, creative and embodied research methods, designed to support people with dementia to participate as fully as possible in the research. Three iterative, interlinked cycles of study were carried out. CYCLE 1 consisted of multisensory research encounters, working with people with dementia and care home staff to explore clothing during wear. CYCLE 2 involved working with creative practitioners to translate thematic findings from the first cycle of study into a series of materials, objects and images. CYCLE 3 repurposed object handling sessions (typically used as a psychosocial intervention within dementia care) as a creative, sensory research method, working with people with dementia to explore their responses to the specific materials, objects and images. The analytic process used varied according to each cycle of study, resulting in the use of reflexive thematic analysis (CYCLE 1), thematic analysis (CYCLE 2) and audio-visual analysis (CYCLE 3). Findings demonstrate that clothing is important to people with dementia at a number of levels. Clothing supports selfhood, enhances spatial and temporal orientation, improves feelings of comfort, belongingness, security and privacy. The aesthetic and sensorial properties of clothing (and textiles) are important to people with dementia. For example, wearing the ‘right’ items of clothing can be empowering, whilst wearing the ‘wrong’ items of clothing can act as a barrier. Attending to such preferences can support relational approaches to care and the design and use of clothing and textiles within care homes. This research identifies the expressive capacity that clothing and textiles afford people with dementia, and demonstrates how this can inform relational approaches to care and activities provision within care homes. Not only do findings contribute multifaceted knowledge regarding the importance of clothing to people with dementia, they also demonstrate the significance of using novel sensory, creative embodied research methods when working with people with dementia

[DiaGram]; Rethinking Graphic Design Process

Central to any graphic design education is the teaching of a design (or creative) process as an aid to problem-solving. This study draws upon experimental workshops within design education, together with current thinking from the broader arts, emotional psychology and the brain sciences, to explore the idea of repositioning process as the ‘main event’ – rather than it being a means-to-an-end. The study sought to frame learning experiences that enabled students to consciously become the object of their own study; including themes that explored ‘personal identity’, ‘dualism’, ‘mind-wandering’ and ‘habit’ as mechanisms to enhance our creative capacity, and evidenced significant improvements in the students’ confidence, dexterity and working methodologies (including the elusive ‘risk’ and ‘play’). The emerging conclusions propose key anchors (‘dissociative creativity’, ‘process as the main event’, ‘collaboration’ and ‘immersion’) that we believe ought to be central to the development of any new teaching (esp. within graphic design). Keywords: Design, Education, Process, Creativity, Risk Full paper. Delivered 31 May 2017. Page 81–95 of attached document

A qualitative study exploring the specific everyday social and environmental challenges faced by community dwelling people living with posterior cortical atrophy (PCA)

Posterior Cortical Atrophy (PCA) is a rare progressive degenerative neurological condition where individuals experience serious vision and perception difficulties. In most cases, the underlying cause for these problems is Alzheimer’s disease. Unlike typical Alzheimer’s, the damage to brain cells is particularly focused at the back of the brain and in the early stages of the condition, day to day memory remains intact. Diagnosis of PCA is often protracted and to date, the specific needs of such individuals have tended to be overlooked. The aim of the study is to contribute to the knowledge base around visual impairment caused by PCA. This study recognised the need for more qualitative inquiry into the specific challenges faced by individuals with this condition. Understanding effective types of improvements to a person’s social and physical environment may improve the wellbeing of community dwelling people experiencing this debilitating condition. To explore practical ‘real-life’ problems and issues, a qualitative research study using in-depth interviews with four community dwelling individuals living with PCA and their caregivers is undertaken. A person-centred philosophy is emphasised to enable the voices of these individuals to be heard. Phenomenological analysis is used to gain a better understanding of the subjective experiences of living with PCA and/or caring for somebody with this condition. The key message from participants is poor understanding of PCA by health and social professionals as well as the general public, inhibiting the provision of information and support for the people with PCA and their caregivers. Finally, the results of this investigation have been used to generate the basic tenets of a best practice guide for supporting people living with PCA and their caregivers. Keywords: posterior cortical atrophy; dementia; Alzheimer’s disease; vision loss; perception; physical environments; case study design; qualitative research; care model

Dementia and meaningful activity

Aim: This thesis presents nine of my published papers based around a common theme of meaningful activity in dementia. The papers and the accompanying text will explore the concept of meaningful activity and whether it is relevant to dementia; the use of meaningful activities for people living with dementia in various settings; and the experiences of people with dementia participating in such activities. Background: An overview of the published literature regarding four areas of meaningful activity is presented in Chapter 2. These areas, which reflect topics of the included papers, comprise: access to the outdoors; exercise and other group activities; dementia and the arts; and involving people with dementia in mindful design. Chapter 3 is a critical discussion of the concept of meaningful activity. Meaningful activity is a concept with considerable limitations but remains useful in psychosocial research and practice in dementia. Methods: The methods of each study are described in each of the nine included papers but the overall methodological approach is summarised in Chapter 4. In general, the approach is exploratory and qualitative, and places a strong emphasis on the voices and experiences of people living with dementia. Results: As with the methods, the detailed results are included in each study. Chapter 5 provides an overall summary of the results, and combines results from those papers with similar methods. Altogether, over 100 people living with dementia have contributed to the data, either as study participants or in the process of co-design. The nine papers included appear in Chapter 6, with the abstract as published and a commentary on each one. The full texts of the papers are reproduced in Appendices 2 to 10. The nine papers fall into four broad groups: Paper 1 is about outdoor access; Papers 2 to 5 concern exercise and other group activities; Paper 6 to 8 are studies of arts interventions; and Paper 9 is about design for and with people living with the dementia. The individual papers are as follows: Paper 1 is an invited editorial that argues for improved access to outdoor space for all people with dementia, whether resident in their own homes or in care homes. This argument is based upon a human rights perspective. Paper 2 reports a qualitative study of a community based sports and exercise group for men with young onset dementia. Four main themes were identified, with enjoyment, anticipation and the creation of a ‘dementia-free’ environment, set alongside less positive themes of loss and lack of other appropriate resources. Paper 3 is a qualitative study of using multisensory boxes as the basis for a storytelling group intervention for care home residents with dementia. The themes generated in our analysis included engagement, curiosity about the contents of the boxes, and the opportunity for self-expression. Paper 4 describes a qualitative study of a Boccia (modified indoor bowls) group for people with dementia. Four main themes were identified, three of them positive: the family nature of the group, the characteristics of Boccia as a sport, and the sense of equality and freedom from dementia in the group. Paper 5, another qualitative study, investigated a weekly swimming group for people with dementia. Themes included the impact of dementia, the pleasure of swimming, and how the group created a sense of equality or being ‘all in the same boat’. Paper 6 reports two case studies of arts interventions for care home residents that were provided as part of a larger arts project. The case studies explored the perceptions of the artists and care home staff and draws attention to the crucial role of care home activity co-ordinators. Paper 7 includes more than one individual study (focus groups and case study) that were used to create a taxonomy of arts interventions in dementia. The paper presents a striking visual model with twelve descriptive dimensions, thus providing a common language for description and future research. Paper 8 is a single case study of a person with advanced dementia and her interaction with a visual art installation in an exhibition, using video analysis. The study was an exploration of capturing the in the moment experience of the participant but also as to whether a person with profound disability could engage with visual art. Paper 9 is a report on a European programme of work around mindful design with and for people with dementia, which provides a background to the work, a description of the models and the approach to co-design that were used, and concludes with a series of design guidelines for different stakeholder groups. Discussion and Conclusions: The main findings and the contribution of the work as a whole are presented and discussed in the final chapter of the thesis. Collectively, the papers present several positive findings. Participation in groups providing exercise or stimulating activities is enjoyed and valued by those taking part. Under the right circumstances, such activities have powerful effects, such as levelling things up for people with dementia, creating equality between group members, and reducing the sense of ‘us and them’ (that is, people with and without dementia). These effects act to enhance the dignity and confidence of participants and reduce the stigma of dementia. In addition, establishing meaningful collaboration with people with lived experience of dementia requires attention to several elements: how and why people are approached initially; how the invitation to participate is framed; observing relevant rights, permissions and consent; creating an equitable and inclusive working environment; and accessible communication and participatory activities that include everyone. There is much common ground across the nine papers, which may be described as an overriding theme of rights, empowerment, liberty and activity, all of which aim at enjoyment and social interaction. The studies included in this thesis have certain strengths, which include the exploratory nature of the studies, the collection of data in naturalistic surroundings, and the emphasis on recording the experiences of the participants with dementia. Possible limitations include the relatively small sample sizes and lack of quantitative data, though it is argued that these are not really required in exploratory studies looking at people’s personal experiences. As a body of work, the nine papers in this thesis make a significant contribution to research and scholarship in the area of meaningful activity in dementia. Future research will need to explore the mechanisms by which interventions ‘work’ and to continue exploration of studying in the moment experiences. Involvement of people living with dementia is essential in order to design products or activities that they may value, and in order to ascertain that allegedly meaningful activities actually do have personal significance

Corporate community engagement framework for stakeholder relations in the extractive sector in the Western Cape, South Africa

Published ThesisStakeholder relations and Corporate Community Engagement (CCE) are both important activities that can and should be used to promote extractive sector success and sustainability. Success can be realised through stakeholder relations that is transformational in context and adaptive in character: to achieve sustainability outcomes envisaged in the CCE framework. For a transforming South African economy, sustainability should not be constrained by ineffective stakeholder relationship but contextual to the character of Corporate Community Engagement (CCE) activities for success. This study presents a framework to support effective stakeholder relations compatible with a transforming economy and supportive of CCE activities of mining companies. The characteristic of a transforming society postulate disparate perceptions of CCE and lack of its effectiveness is reported to be common. The varied perception of CCE effectiveness present the opportunity for a new framework to manage stakeholder relations for sustainability. To achieve the aim of the study, evidence of perception were collected through an exploratory sequential mixed methods approach. This approach enabled the collection of qualitative data using in-depth interviews on sixteen (16) purposefully selected employees from eight participating CCE companies and as well as quantitative online data on 384 randomly selected respondents from the extractive community using LimeSurvey. Although respondents’ perceptions were found to be mixed and variable, an understanding of the need for stakeholder’s relations effectiveness through CCE activities is common. The study concludes that CCE activities would benefit a framework that incorporates stakeholder relations as a strategy for business success and sustainability of CCE

Determining the potential of wearable technologies within the disease landscape of sub-Saharan Africa

Thesis (MEng)--Stellenbosch University, 2019.ENGLISH ABSTRACT: Please refer to full text for abstract.AFRIKAANSE OPSOMMING: Raadpleeg asseblief vol teks vir opsomming

Housing Adjustment Behaviors of Korean Elderly Immigrants Residing in Affordable Housing: The Cultural Aspects of Residential Experiences

The present study is an explorative study that employs mixed methods for examining the daily life patterns and housing adjustment behaviors of low-income elderly Korean immigrants residing in public housing in the Chicago metropolitan area. It particularly focuses on identifying the cultural practices of research participants and the influence of those cultural practices on using residential features, evaluating them, and developing coping responses to satisfy dwelling needs. The study develops upon Canter’s theories of place (1977; 1991; 1997) and Weisman’s model of place (2001), and integrates Rapoport’s concepts of culture (1980; 2008) for exploring the residential experiences of elderly Korean immigrants from a practical standpoint. The housing adjustment behaviors are developed from Morris and Winter’s housing adjustment and adaptation model (1978). It is modified considering the characteristics of research participants and their living conditions. In this study, housing adjustment behaviors are categorized into five modes: residential mobility, structural adaptation, normative adaptation, behavioral adaptation, and residential alteration. Two focus group meetings with elderly Korean neighborhood representatives were conducted for developing and refining the questionnaire and interview protocol. Two-hour in-depth interviews with open-ended questions were conducted with 138 participants from 15 affordable housing complexes. The collected information includes demographic information, cultural orientation, relocation experiences, daily activity patterns, residential evaluation, and housing adjustment behaviors. Interviews were audio-taped upon participants’ approval, and photographs of individual dwellings were taken after each interview. Data were analyzed using quantitative, qualitative, and photographic analysis. Various statistical tests were performed to identify the characteristics, trends, and patterns of the collected data sets, and interpretive analysis was performed with interview transcripts as well as the photographs of individual dwellings. The study results indicate that many research participants maintained their cultural practices of daily living accumulated from their past experiences but also made adjustments as they complied with their aging body and new living conditions. The former group includes sleeping, dining individually or in small groups, cooking, and doing laundry, while the latter group relates to participants’ dietary habits, washing of self, cleaning residential floors, and participating in social activities. Participants considered more of their cultural context when they evaluated the social environment rather than the physical setting of their dwelling. All five modes of housing adjustment behaviors were observed with research participants within their residential settings. More importantly, normative and behavioral adaptations along with residential alterations occurred more simultaneously rather than sequentially when the respondents perceived discrepancy between their needs and their dwelling environment. The research findings identify that elderly immigrants’ cultural needs are not limited to the use of language and ethnic goods, but are also embedded deeply in their daily life patterns and influence their use of their dwellings in a broader sense. The findings also provide more insights of understanding the participants’ residential life and experiences, which will be useful for housing authority and administrators in creating culturally rich contexts for elderly immigrants. The housing adjustment behaviors are useful for architects, designers, and builders with respect to developing the design guidelines and details of creating culturally sensitive housing. For future studies, the study framework should be expanded to include other ethnic elderly immigrants residing in public housing or to elderly Korean immigrants residing in private housing. This will be effective for identifying and understanding the role of culture on their dwelling lifestyles as well as residential experiences