Developing and sustaining a doctoral study in design research involving participants living with dementia during COVID-19

Abstract This article reflects on the impact of COVID-19 on my doctoral research that commenced five months prior to lockdown in England. I reflect on challenges faced in maintaining motivation and resilience when opportunities for informal learning, peer support and interdisciplinary knowledge exchange were removed. The various restrictions to social contact implemented by the UK Government during the pandemic meant I was unable to spend a period of immersion in the context in dementia care settings. As the involvement of people living with dementia was central to my study, I had to develop alternative methods to overcome social distancing restrictions. I used interviews with specialist practitioners to familiarize myself with current practice online. The impact of being unable to engage face-to-face with participants is considered. The design considerations in development of interactive tools to support expression of everyday aesthetic preferences without access to conventional workshop facilities are described. I reflect on how my experience as an interdisciplinary practitioner in design and healthcare helped me to overcome ethical issues in recruitment of participants defined not only as vulnerable, but shielding under UK COVID-19 regulations. The challenges and benefits involved in engaging participants living with dementia using remote sensory ethnography are considered.


Introduction
It is impossible to reflect on the experience of undertaking a PhD during the pandemic without mixed feelings. There is an inevitable sense of disappointment, regret, what might have been. I still recall the thrill of being a successful doctoral candidate on the Research England funded 100 Year Life project at Lab4Living, Sheffield Hallam University. 1 The luxury of funding that enabled me to pursue my own study, together with the chance to share my knowledge and skills with an interdisciplinary research team was a gift.
In January 2020, together with seven other candidates, I was getting to know a newly appointed interdisciplinary research team dedicated to the project. Prior to lockdown we had the chance to assist on a team building project with the new research team. We had opportunities to take part in participatory design training sessions, learning about a range of methods. The funding enabled the lease of a street facing city centre building deliberately selected to encourage and support engagement with the local community. I had relocated to maximize opportunities for learning from specialist researchers in design for health. I was looking forward to contributing my experience in the context of the wider project.
Whilst the pandemic was global, the UK Government restrictions evolved and varied over time. Certain occupations in health, social care and retail were deemed essential for face-to-face contact. Policies that mostly required working from home also applied to higher education. As such, reliance on digital communication, whether by messaging, email or video conferencing became common. Opportunities for informal learning, knowledge exchange and mutual support that can only occur in shared environments was removed: no more chance encounters, incidental conversations or learning from observation. Without these opportunities, maintaining motivation and developing resilience was challenging.

Exploring how design can utilize capabilities retained in dementia
My PhD explores whether design can support expression of everyday aesthetic preferences in dementia in the context of home (Walker 2022). Typically, as dementia progresses, there is an increasing reliance on others and ultimately, a transition into care where everyday choices are made by others on our behalf (Bosco et al. 2019). However, whilst cognition becomes impaired, and narrative identity erodes, an emotional embodied memory is retained (Brown 2017). This implies that no matter how much dementia might affect the way the human mind works, we will always know what we like (Mozley et al. 1999).
As a practitioner with experience in design and occupational therapy, I specialize in finding inclusive design solutions to the barriers to independence faced by people with a variety of physical, sensory and cognitive impairments in their own homes. My interest is in the impact of the design of environments on independence, function, orientation, wellbeing and quality of life. Central to this is learning from the strategies adopted by people with lived experience.
Established principles in the design of care settings advocate the use of sensory cues to support orientation and function for people living with dementia (Marquardt, Bueter and Motzek 2014). An emphasis is placed on visual access: sightlines, lighting and tonal contrast. If this attention to the visual is effective, my interest is in the interrelationship between the way things look, personal preferences and sense of identity. If verbal communication becomes more challenging as dementia progresses, I am exploring whether design can support expression of everyday aesthetic preferences. I have employed a generative design research approach proposed by Sanders and Stappers (2012) as most appropriate to reveal not only observable, but tacit knowledge.

Online learning
From 26 March 2020, UK Government social distancing regulations that prohibited non-essential face to face contact were introduced (UK Government 2020). Those identified as clinically extremely vulnerable were deemed to be at higher risk if they contracted coronavirus, categorized as 'shielding' and required to stay at home. Most people living with dementia fell into that category (Alzheimer's Society 2022). My initial intention to test potential interventions in person with a group of older people recruited through family and social networks was thwarted. My revised approach was to focus on what was possible and avoid reflecting on what could have been.
The rapid adoption of video conferencing platforms such as the World Alzheimer's Report (2020) launch, Manchester Metropolitan University (2021), Care Home Research Forum (2021) provided a more accessible way to learn from current research and practice. During these events I contacted established researchers in the field of dementia via synchronous messaging. The subsequent Zoom conversations gave me practice articulating my research as well as feedback. Their advice on conducting research with people living with dementia helped me to consider how to account for issues related to online interactions in terms of establishing capacity and obtaining consent.
University supervision, seminars and training were all delivered online. In terms of peer support, not all our PhD cohort lived locally, so these virtual meetings made more frequent exchange possible. We set up a weekly zoom meeting for mutual moral support that proved to be a great comfort. However, the experience of the challenges of maintaining concentration and engagement online and the lack of opportunity for chance encounters was often remarked upon.

Familiarization with the context at a distance
The UK COVID-19 social distancing and shielding requirements impacted on my initial plans to spend time familiarizing myself with the context, attending a variety of dementia care settings, so getting to know people living with dementia and their caregivers in person became out of the question. I had to find alternative ways to understand how to situate my research, identify potential gaps in practice and avoid duplicating existing methods.
My contextual review was largely conducted online from a combination of sources including a review of academic and grey literature and attendance at online events through specialist forums (Access Association; Housing LIN; Rare Dementia Support). This enabled me to familiarize myself with current practice and innovations in dementia care, design for dementia, policy, and service delivery across the public and voluntary sectors.
In the absence of being able to learn from dementia care practice through observation, I interviewed a selection of specialist practitioners, identified from my contextual review. This included a creative practitioner, an art therapist, occupational therapists, a psychiatrist, life story practitioners and a designer using empathic design approaches. Whilst these conversations revealed invaluable insights, I can only imagine what I might have gained from observing their interactions in practice.

Developing design research methods and tools
By experimenting with the use of visual and material prompts, I am seeking to learn from participants living with dementia whether visual ways to express personal preferences can support agency and a sense of identity. My interest is in whether design has a value in devising visual methods to support expression of choice and enhance understanding between the person and the caregiver.
The UK COVID 19 work at home restrictions coincided with the time I was developing tools to use with participants. A three month house-sitting arrangement was extended to two years. My furniture and possessions were in storage. My experience in this temporary home became a component of my research. Being in an environment that did not match my own everyday aesthetic preferences helped me to devise the interactions I had with participants.
A mug that encapsulated my chosen colour scheme from my own home provided a striking daily reminder of my personal aesthetic preferences ( Figure 1). Consequently, asking participants about their favourite mug became one of the probes I used to provoke conversations about their everyday likes and dislikes. Their chosen mug became a simple device that has revealed a wealth of meanings and associations.

Shared looking
As my enquiry involved asking people to share their everyday aesthetic preferences it was ideally suited to contacting participants confined to their own homes. Video conferencing enabled me to do this. I developed a form of remote sensory ethnography. This involved a series of three online meetings. Participants were invited to share their likes and dislikes in the context of home in a process I have called 'shared looking'. Firstly, they were invited to share a favourite mug, secondly choosing from a set of colour cards (Figure 2), and finally, a favourite place in their home. I have drawn on the established Visual Thinking Strategies (VTS) method that has been demonstrated to be effective with people living with dementia in arts viewing activities (van Leeuwen et al. 2022). Whereas VTS invites viewers to interpret images such as paintings, my focus is on response to everyday aesthetics in the context of home (Saito 2015).
In the absence of access to conventional workshop facilities, I had to be resourceful. The kitchen table became my making space. Factors influencing the design of the colour cards included ease of use and interaction as well as practicalities of sending in the post. The colours were limited in number to account for issues in dementia, where too much choice can be overwhelming (Chen et al. 2022). Depth of colour hue and saturation colours was considered to account for changes in colour discrimination more commonly associated with dementia (Armstrong 2009). The potential limitations in dexterity associated with age and dementia also influenced design decisions on the size, shape and how they were presented (Figure 2).

Interdisciplinary research in the context of COVID-19
Overnight introduction of social distancing rules confined people living with dementia and their primary caregivers to immediate isolation. Familiarization with the use of teleconferencing, telemedicine and digital technologies accelerated in acute services (Cuffaro et al. 2020). My professional networks gave me access to occupational therapists involved in delivering essential services. Their experience of rapid adoption of remote assessments using a variety of digital devices and software helped to inform the development of my proposed research method (Ward and Casterton 2020). My experience as an occupational therapist also helped me to overcome the barriers of remote communication. I found my skills in establishing rapport in a therapeutic relationship were transferable to my role as a researcher.

Testing my concept with potential participants
In 2020 I presented my concept to the South Yorkshire Dementia Research Advisory Group (SYDEMRAG) and the Sheffield Dementia Involvement Group (SHINDIG). These groups facilitate and support people living with dementia to give feedback and advice to researchers and had transitioned from faceto-face meetings to online during the pandemic. As a successful applicant to the Dementia Enquirers Mini Internship (2022), I also had the chance to be interrogated by a panel of people living with dementia. This helped to inform my approach to my interactions with participants. I was advised of the importance of investing time to establish trust and rapport in recruitment. Advice on obtaining non-verbal consent also informed my ethics application. In terms of exploring everyday aesthetic preferences, asking about a favourite mug worked well to introduce my concept to attendees who have their own mugs close to hand. My experience as a healthcare practitioner conducting home visits is that being offered a drink is common. The mug as a familiar, ubiquitous object is a natural starting point for engagement.

Recruiting and reaching participants living with dementia during the pandemic
People living with dementia, who are routinely defined as vulnerable by university ethics committees, are drawing attention to the lack of opportunities not only to take part in, but to influence the research agenda (Davies et al. 2022). Fletcher (2021) suggests that a practice of blanket exclusion of participants with cognitive impairments has developed. The additional UK Government restrictions during the pandemic introduced new definitions of vulnerability associated with age and contributed to social exclusion for people living with dementia (Greenberg, Wallick and Brown 2020). Some of the participants I recruited whose diagnosis was confirmed immediately prior to lockdown described coping with a life changing diagnosis without access to post-diagnostic support. Similarly, voluntary sector services were unable to deliver face to face contact and where possible moved to online support, which was inevitably dependent on whether people were familiar with the necessary technology. This also limited access to peer support that some participants have told me is invaluable for sharing coping strategies.

Navigating ethics
A principle underlying my approach to my research was to understand the best ways to learn from those with lived experience. Central to this was the Dementia Engagement and Empowerment Project (DEEP) which facilitates people living with dementia not only to have a voice, but to influence the research agenda. The guidance and documents they produce on ethics and accessible communication for recruitment purposes informed my ethics application (DEEP 2020).
As a healthcare practitioner, my familiarity with conducting risk assessments, an understanding of duty of care, safeguarding requirements, disclosure and barring enhanced permissions and capacity and consent in the context of the additional COVID-19 definitions of vulnerability, proved invaluable in making a convincing ethics application. 2 My recruitment criteria were underpinned by the principle of assumed capacity under the Mental Capacity Act (2005), where a dementia diagnosis should not mean people are unable to give informed consent. I have incorporated the option of 'process consent', proposed by Dewing (2007), that involves regular checking with participants throughout the online meetings to enables participants to assent to continue verbally or gesture (thumbs up, nodding). This approach is tailored according to the usual ways individuals indicate consent and involves investing time in getting to know the person first.

The pros and cons of recruiting in person and online
Once lockdown lifted, I became a volunteer supporting the co-ordinator of SHINDIG in recruiting new members and assisting with visits to a variety of community groups. This enabled me to familiarize myself with the context of voluntary sector dementia care in person. I was able to invest time in letting people get to know me and face to face contact enabled me to gain insights on the social and relational aspects of dementia and learning how best to communicate. Once I had ethical approval I was able to visit these groups with a view to recruiting participants for my research. Using this approach to recruitment, I encountered a reluctance for people to selfidentify as living with dementia or a tendency for the caregivers to assume they would not be capable of taking part. Equally many of those who were attending groups were either unable to use video conferencing or were tired of having to use it after extended periods in lockdown.
Ultimately I was more successful in recruiting online than in person. The DEEP (2020) network advertised my research through their newsletter. The Join Dementia Research Network (2022) enabled me to reach participants who had already expressed an interest in taking part in research. This experience of encountering a reluctance to identify with the diagnosis has raised several questions for me around how much this impacts on who is excluded from taking part in research.

Benefits and challenges to online participation
The benefits of using video conferencing were that I could use the participants' own choice of objects and favourite spaces in their own homes to support conversations about their everyday aesthetic preferences. The participants had no need to travel. The timing and length of meetings could be personalized to individual requirements. However as I was not present, I could not use my own observations of their home environment as prompts. When discussing a favourite space in the home participants were advised of the risks of walking around using a device, so anything they wished to show me was sent to me as a photograph in advance of our meeting. Conducting the research from my own home meant that the usual constraints on travel time and risks of lone visiting were removed. Video conferencing automatically records and generate video, audio and transcripts, removing the need to operate additional equipment. Being able to observe myself as the researcher has caused me to wonder whether my facial expressions, such as frowning with concentration, might influence the participant, although I have no evidence of this.
Further to advice from the Dementia Enquirers, investing time in getting to know the participants, and letting them get to know me as the researcher has been a priority in establishing trust and rapport. Doing this online is an extra challenge. Prior to the meetings I send the colour cards ( Figure 2) and a simple explanatory booklet as a reminder of what each of the three meetings will involve. Following each meeting I have created personalized booklets that capture images and quotes from the meetings that are sent to the participants (Figure 3(a,b)). At subsequent meetings I have used these booklets with participants to further elicit responses. One participant asked me to send a photo of myself with the feedback as an additional visual reminder.

Limitations
There are inevitable limits to this study in terms of digital exclusion that must be acknowledged. However at a time when most of us became dependent on some form of online communication, I have found that participants I have met, through necessity of using this form of communications during COVID-19, have acknowledged greater familiarity with the technology than they would have had before. My PhD study is small scale with only ten participants focussed on using visuosensory capabilities that are understood to be retained in dementia when cognition becomes impaired. My initial findings suggest that use of everyday objects and colour as prompts can generate insights about individual preferences from people living with dementia.

Conclusion
Having only experienced most of my doctoral study not long before the onset of the pandemic, I cannot comment on what the experience might have been without these restrictions. As the focus of my study was to explore the expression of everyday aesthetics in a domestic context, I was fortunate to be able to reach and engage with people living with dementia virtually, in their own homes. Using a method of remote engagement using video conferencing I have been able to test a concept that might be transferable to other situations, with potential to reach people in remote locations. Participants have told me they find this less demanding in terms of time and convenience. This process may be less intrusive than home visits, since participants are able to control how much or how little the researcher can see. However in terms of exploring how to support expression of everyday aesthetic preferences, it would be valuable to compare this to an in-person approach.

Disclosure statement
No potential conflict of interest was reported by the author(s).

Notes on contributor
Marney Walker is an occupational therapist with 30 years' experience in housing social care and design. She specializes in advising on the design of inclusive and accessible housing. Central to her approach is an interest in the impact of the design of environment on function, wellbeing and quality of life. Email: marney.j.walker@student.shu.ac.uk