3    Designing for people living with dementia

Cathy Treadaway

Introduction

This chapter explores how design can be used to support the wellbeing of people living with dementia. According to the World Health Organisation (WHO),1 the numbers of people with a diagnosis of dementia are increasing globally and there are few signs of an imminent cure for the disease. A compassionate society, in which all human life is valued and celebrated, should be concerned with the wellbeing of people living with dementia; they should be enabled to continue to experience pleasure, joy and laughter through the illness until the end of life2 (Hughes, 2014; Brooker, 2007). Designers have an important role to play in ensuring this is possible. This chapter discusses ways in which dementia impacts on wellbeing and its implication for design. It describes international design research that is informing the development of new products and services for dementia care and some of the particular challenges that designers face when undertaking applied design research to support wellbeing. The final section of the chapter describes research in which Compassionate Design has been used to guide the development of playful objects to support the wellbeing of people living with advanced dementia.

Wellbeing in the context of dementia

Contemporary definitions of wellbeing including physical, psychological, spiritual and emotional aspects of lived experience and living well (flourishing), subjective wellbeing (happiness) and physical health are considered interconnected.3 In the UK, finding ways to improve wellbeing and increase happiness in society has been a government imperative. In 2008, the New Economics Foundation was commissioned to develop a set of evidence-based actions to improve personal wellbeing (Aked et al., 2008). The result was an influential government report that recommended the following five activities:

  1. 1. connect
  2. 2. be active
  3. 3. take notice
  4. 4. keep learning
  5. 5. give

For people living with dementia,4 particularly in the more advanced stages, these wellbeing guidelines are increasingly difficult to incorporate into daily life. As the disease progresses, people become increasingly disconnected from others and withdraw from the world around them, largely due to the impact of dementia on memory, perception and communication. Cognitive aspects of learning become a challenge and mobility and physical activity are increasingly curtailed. People living with the disease often become socially withdrawn and feel they have little to give. Encouraging them to keep taking notice of the world around them, to connect with others and to feel valued and loved are essential ingredients in quality dementia care that supports wellbeing.

The design challenge

There is currently no cure for dementia and, despite recent scientific advances in understanding the disease, an imminent medical solution seems unlikely (Livingston et al., 2017). With the rapid increase in numbers of people being diagnosed globally, finding ways to help people to have a good quality of life for as long as possible and to live well with the disease is now an imperative (Ógáin and Mountain, 2015). However, the complexity and individualised impact of the disease presents a huge challenge to designers (Hendricks et al., 2017). Understanding how someone living with the disease is personally affected, the context in which they live and the communities and systems that support them is essential. To support wellbeing, designs need to be appropriate, meaningful and comforting; they need to help maintain a person’s sense of self even when they may no longer remember for themselves who they are. Loneliness and social isolation have a huge negative impact on wellbeing and so keeping people connected to their carers and the world around them is also vitally important (Rahman, 2017).

User-centred, inclusive, participatory and co-design methods fit very well with current person-centred approaches to care (Brooker, 2007; Kitwood, 1997). The humanistic approach of person-centred care advocates seeing the person living with dementia in context, adapting communication with them to the sense of reality they perceive – ‘to see the person and not the disease’. Person-centred care acknowledges an individual’s need to sustain their psychological and emotional wellbeing throughout the disease. Recent theories of relational care build on this, suggesting that the context of care, and especially the relationships with caregivers, impact on a person’s wellbeing and should also be considered (Rahman, 2017; Nolan et al., 2004).

Design research for dementia

Traditional desk-based top-down design processes are ill-equipped to address the challenge of designing for a disease that affects people in such profoundly different and personal ways. Approaches that enable designers to become immersed in the care environment, develop empathic relationships and have direct contact with people living with dementia have been shown to provide deep insights and inspiring outcomes (Hendricks et al., 2017; Brankaert et al., 2015). Qualitative research methodologies that acquire data through observations and communication about real-life activities, such as grounded practical theory, ethnography and the use of case studies, have been widely used by design researchers in the field (Craig and Tracy, 2014; Krippendorff, 2006; Kenning, 2017). These social, reflexive and responsive research methods provide rich information about the context and relationships between all those involved in a study.

Participatory and co-design methods

Participatory and co-design approaches have been found particularly valuable in yielding perceptive insights, especially when involving a range of participants from a variety of disciplines or backgrounds (Jakob et al., 2017; Treadaway et al., 2016c; Kenning, 2017; Lindsay, 2012). Co-design methods that involve a mix of participants in creative activities have been used successfully in a number of studies (Hendricks et al., 2017; Kenning, 2017; Treadaway et al., 2016a; Rijn et al., 2010; Windle et al., 2014). The inclusion of key experts in relation to dementia and dementia care ensures that the design process is socially aware, inclusive and human-centred. People living with dementia at an early stage and carers with personal experience of the disease, can share rich knowledge about how dementia impacts on daily life. Traditional participatory methods can also have their limitations, however, and may not always be appropriate depending on the design problem to be addressed. Participatory design activities that require cognition, abstracted thinking and decision-making can be particularly challenging for people living with dementia (Hendriks et al., 2014). Many people living with the disease have altered perceptions and can make over- or underestimations of their capabilities or ‘confabulate’ their experiences. In addition, participation can be stressful for someone living with dementia when it confronts his or her insecurities and highlights abilities once possessed but no longer accessible because of impaired memory or physical disability. This can lead to a participant’s frustration, inertia or withdrawal.

Involving people

Despite these concerns, the inclusion of people living with dementia in participatory and co-design activities can provide mutual benefit to all involved (Kenning, 2017).5 Experts by experience (people living with the disease) can provide researchers with unique insights into the design problem. Rodgers used a disruptive design approach with activities that were fun, safe and failure free in research to co-design a signature tartan fabric with people living with dementia for Alzheimer’s Scotland (Rodgers, 2015). The MinD project is involving people living with dementia to design a mindfulness framework ‘to enable individuals to manage their condition, to develop perceptions of self-empowerment, and to gain confidence with engaging socially’.6 This large international multidisciplinary research project is including the voice of people living with dementia in the early to mid-stages, through self-reflection and creative activities. MinD research methods include the use of visual cards to prompt conversations and visual diaries or activity books to glean deeper insights into the personal life context of people living with dementia.7

Design probes, including visual cards, have been developed in a number of design for dementia projects to prompt conversations and open up spaces for discussion about personal experiences of living with the disease. Design researchers from Imagination at Lancaster University have created a set of Ageing Playfully8 cards with practical recommendations to help in creative workshop facilitation with people living with dementia. A similar approach has been taken by researchers from the FIT project in the Netherlands, who have developed a decision aid to match the needs of people living with dementia and their carers with products and services to assist in their wellbeing (Cila et al., 2017). These tools start with exploring the users’ needs and goals in contrast to more common design strategies that are product- or problem-oriented. This bottom-up research empowers the user and helps them to consider how best to improve their own wellbeing and quality of life at home.

Assistive technology

A wide range of assistive technologies that exploit digital technologies is being developed to support people living with dementia in their everyday challenges. These include, for example, navigation tools, memory aids for administrating medication and apps for prompting conversations when visiting relatives with dementia (Maiden et al., 2013; Bennett et al., 2017). Bennett et al. (2017) contend that the positive attributes of assistive technologies include the potential to delay entry into institutional care, reduce the burden on caregivers and improve the quality of life for people living with dementia. However, they also caution designers to consider ethical and human rights issues that may be associated with devices that track, store or share personal data of some of the most vulnerable people in society. There is also concern that assistive technologies may be designed to reduce or replace human contact to the detriment of people living with dementia (Livingston et al., 2017). Ethical concerns involved in designing for people living with dementia are complex and cannot be ignored.

Ethical issues in designing for dementia

Gaining informed consent from research participants is essential; however, this also requires the consenting individual to have decisional capacity. The complexity of this issue in relation to a disease that is progressive, impacts on memory and fragments a person’s sense of self cannot be underestimated (Hughes, 2014). Designers with experience of working in the field advocate approaches that are situated and co-designed with all those involved. This requires an ongoing process of informed consent that is clearly communicated at each point of contact (Hendricks et al., 2017). The independence and autonomy of the person living with dementia needs to be considered paramount and their right to withdraw at any stage is an imperative. Withdrawal may be expressed in non-verbal behaviour and require the design researcher to be empathic, observant and attentive to the person’s body language. Nevertheless, the ongoing process of gaining ethical consent also helps to reaffirm an individual’s personhood, validating their importance as a member of society and dignity as a human being.

One of the most contentious ethical aspects of dementia care concerns how to deal with distress resulting from altered perception and memory loss; for instance, if a person can no longer remember that their partner has died and keeps asking for them; or that they no longer live in their own home and constantly ask to return there. Facing this reality can be very upsetting for a person living with dementia and also for a carer who needs to align the present circumstance with the alternative perceived reality of that person living with dementia. Some argue that affirming this reality may destroy trust, can be considered to be deceitful, and so undermine their personhood (Kitwood, 1997; Mitchell, 2016). However, others contend that recognition that each person’s experience of reality has its own psychological validity can overcome the ethical dilemma of how to navigate such situations (Brooker, 2007; Killick, 2013; Hughes, 2014).

Carers and family members play a crucial role in informing design specifications. Including them early in the design process as active participants ensures that ethical considerations remain central to the design process.

Dementia and memory

Although memory loss is considered a major symptom of dementia, each person is affected differently and not all types of memory are compromised (Sabat, 2006). Explicit or declarative memories of lived experience are most frequently affected, whereas memories that are implicit, such as those that are emotional or procedural, can be retained into the advanced stages of the disease. For this reason, a person living with dementia may have strong preferences about how they feel about something or someone, but they may not remember why. Changes in memory impact profoundly on how a person will be able to experience the present, resulting in confusion and stress. Early memories of facts or life experiences may be retained clearly, yet recent events or familiar situations can be forgotten. As the disease progresses it is the implicit memories that are more likely to remain. These may include embodied skills accrued over a lifetime through practical experience that have become automatic. Activities such as knitting, folding clothes or even playing a musical instrument may continue to bring pleasure to a person living with advanced dementia, although following a knitting pattern or reading music might no longer be possible. In the same way, emotional memories can be experienced outside of conscious awareness, which is why feelings are often difficult to verbalise (LeDoux, 1998). Understanding how a person living with dementia experiences memories can be of great use to the designer interested in supporting wellbeing. Appreciating personal preferences, interests and capabilities makes it much easier to develop concepts that may stimulate positive emotion by rekindling feelings of pleasure, security, comfort and attachment.

Shared experiences that are ‘in the moment’, playful and imaginative bring immense relief and joy to people who can no longer experience the world as they did (Killick, 2013; Treadaway et al., 2016c). Humour, fun, playfulness and music are key ingredients that have been found to build spaces where shared meaning can be experienced, and mutuality occurs. These ‘magic spaces’ provide common ground, are affirming, comforting and pleasurable. Objects can help stimulate an imaginative playful experience that enables transition into a shared reality that maintains and builds caring relationships (Kenning and Treadaway, 2017).

Objects can also provide meaningful activity, which is known to be particularly beneficial for the wellbeing of people living with dementia (Livingston et al., 2017; Cohen-Mansfield et al., 2012; Chenoweth et al., 2014). As the disease progresses there are diminishing opportunities to engage in hobbies or daily activities that have been important or have given structure to a person’s life. People living with dementia in residential care can become bored, frustrated and agitated, or increasingly passive and reluctant to engage socially (Brooker, 2008). Research has found that the active inclusion of people living with dementia in arts and creative activities can be particularly beneficial to wellbeing (Windle et al., 2014). Opportunities for creativity, such as by using the hands and manipulating physical materials, have been shown in a number of studies to provide a sense of competency and self-esteem thereby affirming personhood (Kenning, 2017; Algar-Skaife et al., 2017). Visits to art galleries and participating in musical activities have also been shown to enhance wellbeing (Kenning, 2016; Shibazaki & Nigel, 2017; Zeisel, 2011).

Design for advanced dementia

One-to-one individualised design research approaches may be more insightful when working with people who live with impaired cognition, communication, memory or perceptual challenges in the later stages of the disease (Hendricks et al., 2017). Including people with profound dementia in research demands great sensitivity, empathy, creativity and flexibility in attitude and approach, as well as a deep appreciation of the complex ethical issues involved. Consequently, until quite recently, there has been little published design research addressing how to design specifically to support the wellbeing of people living with advanced dementia (Rijn et al., 2010). Recent work has explored the design of sensory textiles (Treadaway & Kenning, 2016; Branco et al., 2017), multisensory enriched environments (Jakob et al., 2017), tangible technologies (Bennett et al., 2016) and playful objects (Treadaway et al., 2016b).

The final section of this chapter will describe in more detail design research that has been designing playful objects to support the wellbeing of people living with advanced dementia.

The LAUGH Project

LAUGH, a three-year international design research project,9 has investigated ways of supporting the wellbeing of people living with advanced dementia through the development of playful hand-held objects. The acronym LAUGH (Ludic Artefacts Using Gesture and Haptics) reflects the research aim to understand hand-use and touch, in order to develop playful objects for people with profound dementia. People living with the disease were included in the study along with carers, health professionals, technologists and designers. The project partner, Pobl Gwalia Care, provided access to residents living with advanced dementia in three of its residential care facilities in South West Wales and contributed staff time and expertise throughout the project. (See Figure 3.1.)

fig3.1

Figure 3.1  LAUGH participatory workshop.

A qualitative interpretivist methodology was used in the LAUGH research.10 This included action research and grounded theory approaches, in which both verbal and non-verbal social interaction and engagement in activities were observed in detail (Craig & Tracy, 2014). Participatory workshops, visits and interviews in the care homes, a series of Live Lab evaluations and team reflections were used to gather data. The tools and methods of data collection included audio and video recording, collaborative creative worksheets capturing ideas and commentary, participant feedback sheets, still photography and research journals. The initial phase of the research involved a period of knowledge gathering. This was followed by a period of reflection leading to an iterative cycle of making and testing, followed by Live Lab evaluations (Brankaert et al., 2015), with people living with advanced dementia in residential care.

The first year of the LAUGH research sought to understand what constitutes wellbeing in the context of dementia, informed by those who have knowledge of the disease and intimate experience of care provision. This initial stage included a case study comprising a series of six semi-structured interviews with carers. Professional and informal carers were selected following advice from an advisory group comprising health professionals, representatives from dementia charities, and carers. This was followed by six participatory workshops with 20 participants: a core team of 10 participants who attended at least three workshops and 70 others who contributed to one or more events, plus six researchers from the LAUGH team. The workshops used creative and playful approaches to help participants reflect on playfulness, hand-use, positive emotion and memory in the context of wellbeing for people living with advanced dementia. The workshops were documented using video, photography and participants’ responses collated from feedback sheets, interviews and sketches.

Compassionate Design

Compassionate Design11 underpins the LAUGH design process (Treadaway et al., 2018a; Treadaway & Fennell, 2017). This approach builds on positive design methodology (Desmet & Pohlmeyer, 2013) and is specifically concerned with designing for wellbeing in advanced dementia. It focuses on three vital components that are key when designing for people who are cognitively impaired: design that stimulates the senses, that is highly personalised and that helps to foster connections between people. Compassionate Design places loving kindness at the heart of the design process, ensuring that design validates and maintains the dignity of the individual and provides them with sensory stimulation that connects them to others and the physical world around them (even when it is perceived differently by them and they may not be able to remember who they are) (Treadaway et al., 2018b). (See Figure 3.2)

fig3.2

Figure 3.2  Compassionate Design.

Theories of wellbeing in dementia identify five core human needs: attachment, comfort, identity, inclusion and occupation, with love being the central constituent (Kitwood, 1997; Mitchell, 2016). The three key themes in Compassionate Design embrace these psychological needs, directing the designer’s attention to ways in which designs might be developed to meet them. The focus on personalisation reinforces a person’s psychological need for identity; the connection theme addresses the need for inclusion and attachment and sensory stimulation provides ways of delivering occupation and comfort. By emphasising the need to design for moments of meaningful connection that validate personhood and stimulate lived experience, it may be possible to encourage moments of love described by Fredrickson (2014) as positivity resonance. These connections between people have been found to contribute to both psychological and physical wellbeing (Fredrickson, 2014) and align with Kitwood’s theories concerning the psychological needs of people living with dementia (Kitwood, 1997, Brooker, 2007).

LAUGH research, guided by Compassionate Design, has developed a collection of playful objects for people living with advanced dementia. Each concept is informed by findings from participatory workshops. Key themes arising from these workshops were identified as being vitally important to support the wellbeing of people living with the later stages of the disease and were represented in six thematic words used to guide design development: Nurturing, Security, Movement, Purposeful, Replay and Attention.

In order to ensure that the design concepts were highly personalised, six participants with advanced dementia were recruited for the study from the partner organisation.12 Detailed ‘portraits’ (comprising information about personal preferences and life history) were developed for each of them in collaboration with family members, carers and the person living with dementia.13 Design concepts were explored in two co-design workshops with an interdisciplinary group of key dementia experts, technologists and designers. These were later developed and prototyped by the LAUGH team. The final workshop event provided an opportunity for key experts to critique the prototype designs and identify any health and safety concerns before they were taken to the people they were designed for.

Each object was introduced to the person living with dementia by the team and left with them. The LAUGH team returned after one week, one month and three months, to gather detailed information about how the resident had responded. This Live Lab evaluation process included detailed observation of the person interacting with the object in situ, carer and family interviews, wellbeing reports, researcher reflections and video and photographic documentation. An evaluation matrix was developed to analyse the data, identify recurrent themes and corroborate the multiple sources of qualitative evidence.

The following sections describe the development of two of the LAUGH playful objects and explain how they were informed by the themes emerging from the participatory workshops.

Hug

‘Hug’ was developed for a resident in the later stages of the disease, with little mobility, limited speech and who had frequent falls. When asked about her personal preferences and immediate needs, her carers responded that all she really needed was a hug. She was unable to communicate with the researchers and had few visitors, so her professional carers asked to be considered a surrogate family and provided life history information and identified her personal preferences. Early design concepts emerged that aligned with the theme ‘Nurturing’. This recognises a fundamental instinctive human desire to nurture others (and things) and includes activities such as cuddling, cradling and grooming. Design concepts were explored that focused on soft tactile materials and methods of simulating a hugging sensation. A soft textile solution was proposed, with a beating heart and extended arms to wrap around the body. A soft cushion, doll-like wearable was developed in an iterative process of prototype development. Electronics were added to provide a simulated beating heart and a sound module with speakers, enabling songs from a ‘favourites’ playlist to be played when the object was being hugged.

The positive response of the participant to the prototype was immediate; she snuggled into it, rested her head and closed her eyes to enjoy the sensation of the heartbeat and music. (See Figure 3.3.)

fig3.3

Figure 3.3  LAUGH Hug prototype.

A few moments later she spoke a few words for the first time in many weeks to the amazement of the care staff. During subsequent visits the research team observed a rapid and progressive improvement in her general health and wellbeing. Her professional carers corroborated this, confirming that her appetite had improved, she was socialising with other residents, talking, smiling and, perhaps most significantly, had not fallen since she had been given the Hug object. The care home manager stated that she was convinced nothing had changed for the resident other than being given the Hug and believed it had definitely contributed to her improved wellbeing.

Steering wheel

LAUGH case study interviews with men who had been recently diagnosed with dementia, found that not being able to drive a car is particularly detrimental to self-esteem and has a negative impact on wellbeing. A person living with advanced dementia who had worked as a mechanic for a roadside rescue organisation and had enjoyed driving all his life was subsequently recruited as a participant. He was in the advanced stages of the disease and in very poor physical health, was bed-bound, anxious and depressed. A LAUGH co-design workshop, involving dementia experts, technologists and designers, explored ideas for a personalised hand-held device that might be able to simulate the haptic experience of driving for him.

Early design concepts were influenced by detailed portrait information about the man’s preferences and life history. These ideas were later developed by the LAUGH team into a prototype hand-held steering wheel object that could provide haptic and sensory feedback, including vibration to simulate the running engine, flashing indicator lights and an old-fashioned tune-in radio, preprogrammed with a playlist of favourite music. (See Figure 3.4.)

fig3.4

Figure 3.4  LAUGH steering wheel prototype.

During the Live Lab evaluation in the residential care home, the research team observed and documented the resident’s positive body language, engagement, increased communication and delight (observed in his facial expression) in response to the steering wheel. He sat in his wheelchair alongside two carers who acted out an imaginary road trip to the seaside. This involved him in role-playing the physical activity of manoeuvring the vehicle, parking and going to buy ice cream. The care home manager reported that the steering wheel had resulted in the most positive interaction they had ever experienced with this particular resident. The object had helped to engineer a shared playful experience that was clearly enjoyed by all involved.

Discussion

Research described in this chapter has shown that by placing compassion for the person living with dementia at the heart of the design process, it is possible to design appropriate and meaningful objects that help sustain wellbeing and bring moment-by-moment opportunities for happiness and hope.

The two highly personalised LAUGH objects described in the previous section were developed in response to preferences and life history information of two specific people living with advanced dementia. The guiding principles of Compassionate Design have ensured that the objects created were personalised, meeting individual needs and preferences; sensory and with low cognitive demand; and connecting the person living with dementia to objects and people in the world around them. Although highly personalised, each design also corresponds to one of six key themes that resonate with universal human needs. These include the desire to nurture and be nurtured (1, Nurturing); to feel safe and secure (2, Security); to have agency and a sense of purpose (3, Purposeful); to move and interact with others (4, Movement); to be creative and playful (5, Replay); and to attend to the moment (6, Attention). These themes emerged from the LAUGH participatory research and have been found to be critical in designing to support the wellbeing of people living with dementia. The predicted increase in the numbers of people living with the disease means that finding ways to scale up highly personalised solutions, to assist in care and support wellbeing, are urgently needed. Findings from the LAUGH research indicate that it may be possible to develop highly bespoke yet generic designs suitable for manufacture, by responding to the universal themes and incorporating interactive and programmable digital technology to provide personalisation.

Although there may be no sign of an imminent cure for dementia, there remains hope that people’s life satisfaction can be improved and their happiness increased by designs that enable them to keep connected to the world around them, maintain their identity and focus on ‘in the moment’ pleasure. Compassionate Design has been found to be a useful approach to guide the design process, ensuring that loving kindness for the person living with dementia remains at its heart.

Acknowledgements

LAUGH design research was funded under AHRC Standard Grant Ref. AH/M005607/1.

Notes

References

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