Design for People Living with Dementia

Paul A. Rodgers

• Publisher: Routledge
• Year: 2022
• Print ISBN: 9780367554750
• eBook ISBN: 9781000568653
• Edition: 1
• Topic: Design
• Subtopic: History of Art

This book presents the latest research that shows how design thinking, making, and acting contribute to the co-designing and development of products, spaces, and services with people living with dementia.

We know that there is currently no cure for the 130+ kinds of dementia that millions of people live with all over the world, but the designed interventions such as the products, spaces, and services described in this book can address stigma, isolation, loss of confidence, and raise awareness and greater understanding of dementia. This book showcases a range of innovative and creative design interventions that have been developed to break the cycle of well-established opinions, strategies, mindsets, and ways of doing that tend to remain unchallenged in the health and social care of people living with dementia.

The book will be of interest to scholars working in product design, service design, experience design, architecture, design research, information design, user-centred design, and design for health.

1Interactive Textiles for Well-being in Dementia-friendly Communities

Lucy Robertson, Chris Lim, and Wendy Moncur

DOI: 10.4324/​9781003095460-2

Introduction

There is an urgent need for playful, personalised, interactive, comforting, and tactile solutions that help those living with dementia to live positively (Treadaway, Kenning, and Coleman, 2014; Treadaway et al., 2019). Using Research through Design (RtD) and a person-centred approach focusing on the “lived experience of people” (Reason, 1944), this paper explores the making and use of interactive textiles for well-being within two dementia-friendly communities (DFCs) in Scotland. Working closely with these groups, the researcher designed and facilitated interactive textile workshops. Following the workshops, the DFCs decided that they would “craft bomb” (using craft to decorate) their communities with textiles to raise awareness of dementia, and invite the wider community to collaborate.

The symptoms of dementia present both a challenge and an opportunity for design researchers who hope to enhance well-being through their practice-based studies. Treadaway et al. stated that “those who have the greatest need for excellent design are often the most vulnerable in society” (Treadaway et al., 2014, 2019). This research explores the use of interactive textiles for well-being. It brings together making, interaction, technology, and textiles in new ways, enabling social connections, celebrating creativity, and fostering new relationships and experiences for those living with dementia and their communities. In describing this study, we first provide background on dementia, well-being, and textiles, highlighting the relationships between them. We then move forward to outline our RtD methodology and person-centred approach alongside our data analysis method; a novel application of Seligman's (2011) “Well-Being Theory – PERMA”. We close by discussing the project's positive impact on well-being under the themes of PERMA – Positive Emotion, Engagement, Relationships, Meaning, and Achievement.

Dementia and Well-being

Dementia is multifaceted. It affects individuals in different ways, with dementia taking many different forms, depending on the type and impact of the disease, and the individual's personality before becoming ill. Cognitive function declines over time at different rates (WHO, 2017). Dementia has a number of forms, including Alzheimer’s, frontotemporal dementia, and vascular dementia. When diagnosed with dementia, many have negative experiences and feel a great sense of loss (Houston and Christie, 2018; Hydén, 2018): not only of memory but also of relationships and social life. Wolverson, Clarke, and Moniz-Cook, 2015 note that “people living with dementia can retain important strengths and have positive experiences in spite, and even because of, living with the condition”. Despite the physical, psychological, and social impacts that dementia can have on those diagnosed with it, a positive state of well-being remains achievable.

In the literature, although well-being is conceived as a complex concept that is difficult to define (Dodge et al., 2012), this has not deterred researchers from attempting to define or describe what well-being is. WHO (2018), for example, reports that a positive state of well-being allows individuals to realise their potential, manage life's daily stresses, work productively, and contribute to their community. In his book “Flourishing”, Seligman (2011) introduces a “Well-Being Theory” and describes well-being as a “construct” explaining that “no single measure defines it exhaustively, but several things contribute to it; these are the elements of Well-Being, and each of the elements is a measurable thing”. Each of these “elements” contributes to well-being but none defines it (Seligman, 2011, 15–16). The five measurable elements of Seligman's “Well-Being Theory” are Positive Emotion, Engagement, Relationships, Meaning, and Achievement (PERMA).

There is a range of initiatives and campaigns throughout the world, which focus on the well-being, empowerment, and happiness of those living with dementia. Underlying most of these initiatives is the focus on maintaining the personhood of the person living with dementia. This is supported through education, involvement, and leadership of those living with dementia and their communities. For example, Alzheimer's Society, United Kingdom, has developed a recognition process for DFCs: towns, cities, counties, and villages where “people with dementia are understood, respected, and supported” (Alzheimer's Society, 2020). The process outlines the steps that communities need to take to form a successful and supportive DFC.

Studies have highlighted how the design of environments, textiles, positive experiences, and social opportunities can support well-being for those living with dementia (e.g. Jakob and Collier, 2017; Kenning et al., 2019; Treadaway et al., 2019). However, evaluation of this support still needs work. In this study, we innovate by applying Seligman's “Well-Being Theory” (2011) to analyse the qualitative data. As far as we are aware, Seligman's PERMA Well-Being Theory has not been explored within a Design for Dementia context. Seligman's five measurable elements of well-being – Positive Emotion, Engagement, Relationships, Meaning, and Achievement (PERMA) – are used to qualitatively map the well-being effect that participatory making of interactive textiles had on participants.

Interactive Textiles, Well-being, and Dementia

In this work, the tactile qualities of textiles have been extended further. Traditional textiles are combined with digital components like power, light, sound, and small computers to create interactive textiles or e-textiles (Berglin, 2008). Increasingly, textiles and electronics are seen as complementary disciplines, with textile designers using electronics and smart materials within their design, research, and knowledge exchange (Posch, 2017).

Textiles and dementia have been paired in studies (e.g. Branco, Quental, and Ribeiro, 2016; Jakob and Collier, 2017; Kenning and Treadaway, 2017; Lim and Nevay, 2016) exploring how the inherent tactile and comforting nature of textiles can be utilised for those living with dementia. Particularly relevant to this study is the LAUGH (Ludic Artifacts Using Gesture and Haptics) project (Treadaway et al., 2014). Creating playful objects with and for people living with dementia, LAUGH highlights the importance of play and “in the moment” joy (Treadaway et al., 2019). Each object is highly personalised, emphasising that we need to consider the individual personalities, cultures, and identities of participants when designing for dementia. Care staff involved in the LAUGH study observed “laughter, smiles, and improved interaction”, resulting in an “improved quality of life” for the users of the objects. From a young age, play helps us understand the world, develop social bonds, emotional resilience, self-esteem, corporation, problem-solving, and have fun (Wellcome Collection, 2019). Play is at the “heart of creativity” allowing us to try, fail, and embrace “happy accidents”; when things don’t go to plan but create a better result (Rosen, 2019).

Textiles have established positive effects on well-being. They help us “communicate and learn, add beauty and stimulation to our days, and make our lives richer” (Gordon, 2011, 202). As materials, textiles are sensory objects that can engage our sight, touch, sense of smell, and even our hearing. Historically, textiles have social importance, through bringing together communities, and representing makers’ and wearers’ identities, for example (Gordon, 2011, 30–31; Green, 2017; Harvey and Compton, 1978; Hunter, 2019; Thompson, 1979). For example, fisherman's guernseys are made from traditional knitting patterns belonging to families and locations. When worn, they represent the identity of the wearer, including their family name and occupation (Thompson, 1979, 3). The act of knitting guernseys also provided their makers, often wives of the fishermen, with a “tight-knit” community gathering on the beaches and in their houses to knit (Harvey and Compton, 1978). This sort of activity can be seen today. Knitting, quilting, and embroidery groups and guilds meet up worldwide to share skills, make together, and socialise (Donaldson, 2013; Gordon, 2011, 132; Moore and Prain, 2019). Such activities relate closely to Seligman's PERMA framework, with textile-making providing positive emotions, engagement, and accomplishment. Positive relationships are built and strengthened through community textile groups, providing a sense of belonging, identity, and meaning. Textiles can also be used to raise awareness of environmental, social, or political issues through the act of “craft bombing”. Craft bombing is where knit, crochet, or other craft are applied to public spaces as a form of decoration, political statement, or outdoor exhibition (Donaldson, 2013; Moore and Prain, 2019). Craft bombing “…can be political, it can be heart-warming, and it can be funny” (ibid).

Textile-making has been highlighted in various studies concerning well-being. Corkhill et al.'s (Corkhill et al., 2014) “Voices of Knitting” study explored well-being factors such as mood and cognition following knitting. Their results demonstrated that knitting produced several positive well-being effects, including feelings of calm. 81% of respondents suffering from depression perceived that knitting made them feel happier. The “Crafting Well-being” (Kenning, 2015) qualitative study with lacemakers identified well-being-related themes including health, self and identity, community, sharing, learning, and growth.

Creative Clans

“Creative Clans” is a study that builds on the authors’ earlier work “Sonic Flock”, which involved the crowdsourcing, display, and gifting of a “Sonic Flock” of interactive textile birds in the Outer Hebrides (OH) in Scotland (Robertson, 2019; Robertson, Lim, and Moncur, 2019). Sonic Flock allowed the first author to build trust with the DFC in the OH, who suggested a collaborative project (“Creative Clans”) with another DFC – Dementia-Friendly East Lothian (EL) in Scotland. The research represented by Creative Clans emerged from this suggestion, reflecting the two communities’ desire to strengthen links and relationships.

Creative Clans explores the making and use of interactive textiles for well-being within and between these two DFCs. A playful and personalised approach was used, listening to needs, interests, and ideas, to inform interactive textiles for those living with dementia. Working closely with these communities, the first author designed and facilitated interactive textile workshops and exhibitions to explore the following research question:

How does the participatory making of interactive textiles impact on well-being through:

1. Fostering positive emotion?
2. Creating in-the-moment engagement?
3. Cultivating relationships?
4. Sustaining social identity (meaning)...

Table of contents

• Cover Page
• Half-Title Page
• Series Page
• Title Page
• Copyright Page
• Contents
• List of Figures
• List of Tables
• List of Contributors
• Design Research for Change: Caring for People Living with Dementia: Introduction
• 1 Interactive Textiles for Well-being in Dementia-friendly Communities
• 2 Textile Memories: Designing Wearables Technology for People Living with Dementia
• 3 Designed with DeMEntia: Building Long-Lasting Collaborative Care
• 4 Design for People Living with Dementia: Considerations and Qualities for Technology and Design
• 5 Designing Nurturing Experiences for People Living with Advanced Dementia
• 6 The Emergence of Empathy: Through Designing for One
• 7 Dementia Architecture: Designing Typological Floorplans Using the “Research through Design” Approach
• 8 Alexa, What Day Is It Again? Virtual Assistants Empowering People Living with Dementia at Home
• 9 Making the Fuzzy End Even Fuzzier: The Role of the Caregiving Relative in Participatory Design Processes with People Living with Dementia
• 10 “Paradise Room”: How the Sensory Room Can Become a Desirable Destination for Residents in Care Homes
• 11 Parlours of Wonder: Designing Intergenerational Spaces of Encounter
• 12 Connecting Design Students with People Living in Long-Term Care: Driving Social Change through the Curriculum
• 13 Super/Normal: Designing Dementia Services around Wicked Assets
• 14 Trigger Memories through Material Culture in Mexican People Living with Dementia
• 15 Products and Strategies for Dementia Rehabilitation and Prevention in Nursing Homes
• 16 MemoryBox: Using Digitised Memories to Improve the Quality of Life of People Living with Dementia
• 17 Evaluating Shared Tablet Interactions Co-created for People Living with Moderate-to-Advanced Dementia
• 18 Exploring the Role of Everyday Sounds to Support People Living with Dementia
• Index