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Abstract

Dementia researchers have persuasively argued for using flexible and creative methods with people with dementia, to ensure their historically marginalised voices are now heard. This article builds on that work, using examples from a study of medicines practices of people with dementia and their informal carers. We have two aims: firstly, we show the ways in which two methods – linguistic ethnography and diary-interview method – can support the inclusion and participation of people with dementia. Secondly, we examine the methodological insights and the dilemmas created by using these methods. Our focus on supporting all means of communication (verbal, non-verbal, drawing, photography and writing) underpinned our choice of methods, which in turn facilitated inclusion and participation. Using a linguistic ethnographic approach supported participants to use material objects to tell their stories; video-recording interactions encompassed non-verbal communication; creative diary-methods made non-linguistic means of knowledge production possible. Moving around the home and neighbourhood and using familiar objects enabled people with dementia to explain their medicines in the context of their lives. Paying attention to sensory data created new insights into the skills and knowledge that family members develop and employ when they provide informal care. The methods were not without challenges. Participants experienced a tension in balancing opportunities for self-expression with the time and effort involved in participatory activities. For the researcher, prioritising the affective quality of respectful research relationships whilst not straying into ‘faked friendship’ created situated ethical dilemmas.

Keywords

ethnography methods in qualitative inquiry community-based research focused ethnography observational research

Introduction

Dementia is an umbrella term for a number of syndromes that cause cognitive decline. Dementia originates neurologically but is experienced socially (Macdonald, 2018). Historically, knowledge produced from dementia research has emerged from studies conducted within a positivist biomedical paradigm (Vernooij-Dassen et al., 2021). There is now widespread acceptance of the imperative to undertake research which includes the perspectives and experiences of people living with dementia (Hubbard et al., 2010; Novek & Wilkinson, 2019). In particular, scholars have called for methods which can be flexibly adapted to meet the needs of people with dementia and their families (Bartlett, 2012; Webb et al., 2020). Creative methods have been used successfully in several projects. These include participatory film-making (Capstick, 2011); supporting daily decision making using Talking Mats (Murphy & Oliver, 2012); understanding the embodied capabilities of people with dementia to express selfhood (Kontos et al., 2017); exploring identity through the use of material objects (Buse & Twigg, 2016) and involving people with dementia in hospital service development (Hung et al., 2017).

Creative research methods have rarely been employed to understand the medicine practices of people with dementia (see Lim et al. (2022) for a recent exception). In this paper we describe our use of linguistic ethnographic and participatory diary methods to open up new routes into understanding the medicines management practices of people with dementia. Our research questions focused on understanding how and in what ways interactions between people with dementia and their informal carers can support or inhibit medicines optimisation. Medicines optimisation, defined as ‘a person-centred approach to safe and effective medicines use’ (Duerden et al., 2013) encompasses a need to understand an individual’s medicines practices when seeking to reduce the burden of medicines. Using examples from our study, we show how we employed ethnographic and participatory methods to support the inclusion and participation of people with dementia. We present examples of the data we gathered using these approaches and discuss the opportunities and challenges faced both by our participants and ourselves as research partners in this process. We begin with an overview of research exploring how people with dementia and their families manage their medicines at home.

Medicines Management Research Involving People with Dementia

Managing multiple medicines is complex for people living with dementia and their informal carers (Maidment et al., 2017; Smith et al., 2015; While et al., 2013), and research in this area can be challenging. Carers report undertaking up to ten recurrent medicines related activities. These range from organisational duties such as ordering and collecting prescriptions, to the more clinically oriented tasks of monitoring side effects and deciding the frequency of ‘as required’ medicines (Francis et al., 2002). Over time, carers may craft pragmatic changes to medicines regimens to enable them to provide ongoing care and support at home (Berry & Apesoa-Varano, 2017). Characterising these practices as simply adherent or non-adherent obscures the complexity of the situated decision-making that families affected by dementia undertake every day. It is well known that patients without dementia resist and reshape regimens of prescribed medicines in thoughtful and engaged ways that evaluate the benefits and disbenefits of medicines (McCoy, 2009; Pound et al., 2005; Swinglehurst & Fudge, 2021) and that meet their need to integrate medicines into the context of their daily lives (Lawson et al., 2022; Maidment et al., 2020; Swinglehurst & Fudge, 2021). Framing lay medicines practices using the notion of adherence also creates a risk that people are reticent to discuss their real-life practices out of concern for being seen as ‘non-compliant’ (Hawking et al., 2020). Instead, approaching medicines practices from a position of curiosity about everyday life can make visible the ways in which people strive to use their practical knowledge to interpret prescribed medicines regimes (Pols, 2019), sidestepping the important but somewhat restrictive topic of adherence.

Researchers typically investigate everyday medicines practices of people with dementia using traditional qualitative approaches such as interviews, focus groups and questionnaires (Barry et al., 2021; Lim & Sharmeen, 2018; Maidment et al., 2017; Smith et al., 2015). These methods contribute significant insights into understanding medicines routines and challenges, but their focus on eliciting accounts of practice (rather than practices themselves) often results in a tendency to foreground the views, experiences, and beliefs of carers over people with dementia, who may be precluded from participating due to atypical language and cognitive skills (Lim & Sharmeen, 2018). Methods which privilege recall skills and communication can be exclusionary, stressful or embarrassing for people with dementia (McKillop & Wilkinson, 2004), and may contribute to the absence of these voices from the medicines literature (Lim & Sharmeen, 2018).

Different methods can be used that both support the inclusion and participation of people living with dementia and contribute to different ways of understanding medicines practices. Lim and colleagues (2022) successfully engaged people with dementia in co-producing data about their lived experiences of medicines. Participants photographed medicines-related aspects of their daily lives and explored these in interviews, using the photographs to direct the topics for discussion and prompt memories.

Our aim for this paper is twofold. First, we build on Lim et al.’s (2022) creative medicines research, showing how we used a linguistic ethnographic approach and a diary-interview method to encourage inclusion and participation of people living with dementia. Second, we explore the new types of knowing that these methods make possible, such as the spatial, temporal and sensory aspects of medicines practices. We draw these together to reflect on the opportunities and tensions we experienced when using these methods. We turn now to a brief overview of our methodological approaches.

Linguistic Ethnography: An Overview

Linguistic ethnography (LE) combines in-depth investigation of language and communication with ethnographic data to gain an understanding of the situated nature of interaction in particular social contexts (Rampton et al., 2004). Language and communication data are collected in a naturalistic setting, using audio or video to record real life interactions. Fine grained analysis of language-in-use is combined with insights gained from ethnographic approaches such as observation and interviews. Ethnographic observations generate rich, detailed fieldnotes that pay close attention to context and to the perspectives of participants, making space for including complexity in accounts of particular settings (Hammersley & Atkinson, 2019).

Linguistic ethnography is an emergent field that has been described as ‘an area of shared interests where established research traditions interact’ (Shaw et al., 2015). It has its roots in several fields of scholarship including linguistic anthropology (Duranti, 2001; Goodwin, 2013), conversation analysis (Antaki, 2011; Sidnell & Stivers, 2013), interactional sociolinguistics (Gumperz, 2005; Schiffrin, 1995) and critical discourse analysis (Wodak & Meyer, 2001). It is beyond the scope of this paper to explore the breadth of LE scholarship (see Shaw et al., 2015 for a comprehensive account) but we briefly describe conversation analysis (CA) as we have employed CA tools in our research. CA offers LE scholars a range of microanalytic techniques which may be used to explore naturally occurring interactions in detail (Rampton et al., 2010). This involves analysing interactions turn-by-turn in fine-grained detail, noting features such as pauses, overlaps in speech between two speakers and changes in pitch and volume (Sidnell & Stivers, 2013). In LE, participant perspectives and practices are sought through a complementary ethnographic approach, which ‘seeks to capture and understand the meanings and dynamics in particular cultural settings’ (Rampton et al., 2004, p. 2). This interplay between context, communication and practices has been made productively evident in linguistic ethnographic examinations of healthcare settings, such as the use of the Electronic Patient Record by General Practitioners in medical consultations (Swinglehurst, 2014) and the use of video-mediated consultations in diabetes, heart failure and cancer services (Shaw et al., 2020).

Ethnography, which aspires to make visible what people do in practice, rather than what they report they do (O’Reilly, 2012) is well suited to exploring the complex medicines practices of people with dementia, the care practices of those who support them and the technologies and tools that come into play (Mol, 2008). The ethnographic emphasis on prolonged immersion in the field under study (Rampton et al., 2010) enables repeated opportunities to develop meaningful and trusting relationships between participants and researcher. In our study, this was a crucial prelude for introducing video recording and exploring the sensitive topic of ‘personally meaningful use patterns’ of medicines (Berry & Apesoa-Varano, 2017, p. 51). Scholars of discourse have also pointed to the value of an ethnographic orientation in dementia research (Müller & Guendouzi, 2009) as intersubjectivity, both within the interaction and the researcher’s interpretation of it, rely to a greater extent on non-verbal cues, material practices and contextual understanding.

It is worth noting that an analytic attention to context is not without tension. Conversation analysts, for example, typically focus on the structural organisation of turns in interaction, attending only to that context which interlocutors make relevant through talk. This epistemological orientation can sit uncomfortably with the attention to context in LE. Analysts have to take care that claims to wider discourses are well supported by the data. However, an ethnographic appreciation of context makes some interpretations of interactional data more likely than others and creates opportunity to adopt a more critical stance than a focus on ‘talk’ alone may allow. We suggest that LE opens up scope for in-depth and nuanced analysis of practices, accommodates the ‘messiness’ of context and creates space for challenging some of the dominant discourses and socially ‘malignant’ positioning (Sabat, 2003) related to living with dementia.

Modified Diary Interview Method: An Overview

The modified diary interview method (Bartlett, 2012; Bartlett & Milligan, 2015) is a participatory approach which shares an ethnographic sensibility, encompassing a drive towards understanding ‘every aspect of human experience, not just those reducible to language’ (Bartlett, 2012, p. 1718). It builds on Zimmerman and Wieder’s (1977) development of the diary-interview method (1977), and a history of solicited diaries in health research, including studies with older adults (Jacelon & Imperio, 2005; Milligan et al., 2005) and with family carers’ experiences immediately after a diagnosis of dementia (Välimäki et al., 2007). Flexible diaries using multiple formats have been used to explore the lived experiences of activists who have dementia (Bartlett, 2014) and family carers’ experience of changing behaviours in the person they care for (Herron et al., 2018).

In a modified diary interview study, participants keep a diary in whichever form works best for them – written, audio, photographic and drawing – for a defined time period. Participants take part in a post-diary interview, during which the researcher uses the diary entries to prompt recall and reflection. Diary entries ‘scaffold’ the conversation (McCabe et al., 2018), providing shared points of reference that both participant and researcher can orient to together to help prompt memories. By echoing the language the participant uses, the researcher can create interview questions that have maximal salience for the participant. In the current study, for example, we variously used the term ‘pill box’ or ‘blister pack’ in response to the particular terms our participants used. Participants can also record entries ‘in the moment’, reducing the need to rely on recall (Bartlett, 2012). Using semi-structured diaries allows participants to record at their own pace and make revisions (Bartlett & Milligan, 2015) and gives control to participants to focus on personal important specific events, feelings and thoughts (Kenten, 2010). Diaries disrupt research norms and power relations, to an extent, by handing control of the content and timescale of data collection from researcher to participant.

About the study

Background

The doctoral study described in this paper originated from a larger study exploring multiple medicines use (polypharmacy) in older adults who experience multimorbidity (Swinglehurst & Fudge, 2019). For the purpose of this study, polypharmacy is defined as the concurrent use of five or more prescription medicines (Masnoon et al., 2017). In the original research programme, participants were recruited to a longitudinal ethnographic study from three General Practitioner (GP) practices. Although participants with dementia were explicitly sought, no people with dementia were identified for inclusion by the GP practices involved. We recognised that recruitment processes and research methods needed to be more flexible and specifically tailored to meet the individual needs of potential participants with dementia.

The research was conceptualised and designed by LH, NF and DS. All data gathering was conducted by LH, who has a professional background in speech and language therapy and training in qualitative research methods, including ethnography. Analysis was led by LH with findings and interpretations regularly discussed with DS, academic GP; NF, social scientist, both experienced ethnographers in health care settings.

Participants

We recruited participants in eight dyads (composed of the person with dementia and one informal carer) and one triad (composed of the person with dementia and two informal carers). One carer withdrew from the research, leaving 18 participants in total. We were guided by the notion of ‘information power’ (Malterud et al., 2016) in ascertaining sample size and iteratively reviewed the quality of the data collected until we were satisfied that we had gathered sufficient data to stop recruitment. Participants were recruited via Join Dementia Research, an online self-registration database (www.joindementiaresearch.nihr.ac.uk). After being matched with the project, we contacted participants with dementia by email or telephone to discuss the study. We sent interested participants a study information sheet, designed in line with accessible information guidelines (Dementia Engagement and Empowerment Project, 2019) then visited them at home to discuss participation. Participants who had capacity to give informed consent signed an accessibly designed consent form. Two participants were unable to give informed consent under the Mental Capacity Act (2005). On both occasions their spouses made a consultee declaration, stating they believed their partner wished to take part, taking into consideration their knowledge of their partner’s wishes and beliefs (McKeown et al., 2010).

Inclusion criteria for participants with dementia were: living at home; taking five or more prescription medicines; receiving support from a family member or friend with some aspect of their medicines. All participants confirmed they had a diagnosis of dementia, diagnosed between 20 months and 10 years before enrolment into the study. Three participants had a diagnosis of vascular dementia, three of Alzheimer’s disease, one participant had mixed vascular and Alzheimer’s disease, one participant had alcohol-related dementia and one participant had Posterior Cortical Atrophy. Six participants with dementia were supported by their partner and three were supported by an adult child, of whom two lived with their child and one lived alone but received medicines support by phone.

Research Process

The first author, LH, visited participants at home six to ten times over a period of six months to one year, keeping in contact by phone, email or text message between visits. Having multiple options for contact accommodated the needs of both participants with dementia and busy carers. LH spent extended time with participants, observing daily life and talking to them about their medicines, routines and wider social lives. Data collection at visits included contemporaneous ‘jottings’ (Emerson et al., 2011) in a notebook, composed of notes of observations, short snippets of verbatim speech, impressions and sketches. Participants also occasionally invited LH to take photographs of objects such as dosette boxes and cupboards where medicines were stored. Participants often referred to key documents and texts, such as the ‘green slips’ from prescriptions, or hand-written medication lists; they sometimes shared copies of these to accompany ethnographic notes. Contemporaneous notes made in the home were written up into fieldnotes within 24 hours. Writing these prompted other memories and details about the observations, which were incorporated into the account (Hammersley & Atkinson, 2019). Later reflections, analytical memos and ideas about future plans and lines of inquiry were also noted.

After two to three research visits LH introduced participants to recording medicines related activity using video. The equipment used to make recordings and who was behind the camera varied in response to the wishes and needs of the participants. Several participant pairs chose to use their own mobile phones or tablets, preferring to use familiar equipment. Those who did not were provided with an electronic tablet or small video camera with a flexible tripod and instructions on how to operate them. The content of recordings varied, but included daily routines of medicines taking, discussing medical appointments and considering the side effects of a new medicine.

The first author discussed the diary process with participants during a research visit before the diary-keeping phase, to revisit practicalities, to establish the preferred format and as a form of ‘process consent’ (Dewing, 2008). One couple declined to keep a diary and one dyad withdrew before the diary phase, leaving seven people with dementia and seven carers who kept diaries.

In line with previous studies (Bartlett, 2012; Jacelon & Imperio, 2005), participants were offered multiple formats for diary keeping; written, audio, video and photographic. Participants could choose to keep individual diaries or complete them as a dyad, ensuring the diary method was as accessible as possible to all participants. One dyad kept an audio diary together, making voice notes on their electronic tablet. Four participants with dementia kept their diaries independently, one typed, one handwritten, and two handwritten combined with photographs and/or drawings. Two participants with dementia contributed to diaries written by their partners. Each participant who chose to keep a handwritten diary or photo diary was provided with a notebook and a digital camera. Participants were provided with instructions and prompt questions in a format which met their needs. For example, LH audio recorded the instructions and questions for a participant with visual difficulties. Participants were given the following instructions:

‘This is your diary, so please feel free to include anything you would like to. I am interested in hearing about your daily experiences, both those related to your health and medicines and those which are about other parts of day to day life.

Please try to complete it every day for a week. The diary entries can be as long or as short as you like. You can record as many entries as you like each day. You might find it helpful to record any thoughts or feelings as they occur, rather than wait until later’.

Diary prompt questions included: How are you feeling today? What happened today? What was it like taking your medicines today? Did anything change with your medicines? What was most interesting and enjoyable about the day? Who did you see or speak to?

At the end of the diary keeping phase, the first author visited participants to pick up the diaries and cameras, where applicable. LH read the diaries and familiarised herself with the contents. Participants then took part in a post-diary interview at home, using the diary as a prompt. Although schedules were personalised to their individual diaries, each were asked questions such as: Can you tell me more about this entry? What was important about __? How do you feel reading/hearing it now? If participants included photographs or drawings, they were asked questions such as: Can you tell me a bit more about this picture? What prompted you to take this photo/make this drawing? What is important to you about this? What do you like about this photo/drawing? Interviews were audio recorded and lasted from 30 minutes to two and a half hours.

Handwritten and hand drawn data produced by participants were retained and securely stored as research data. All participants were offered photocopies of hand-produced data and hard copies of any photographs. All digital data were securely transferred via a project laptop computer to non-networked encrypted hard drives and securely stored.

Ethical Considerations

The study received ethical approval from London - Camberwell St Giles NHS Research Ethics Committee (Ref: 21/LO/0041). Each participant signed two consent forms. The first, to consent to take part in the study, was completed at the first visit. The second was completed after the videos had been recorded. Participants could choose whether the video be solely used for research purposes, or gave consent for short clips to be used for education purposes. Participants could review their videos before choosing how the video was used.

Participants with dementia who did not have capacity to give informed consent were included in the research if a family member acted as a ‘personal consultee’. This process of proxy consent allows consultees to make a decision based on their long-standing knowledge of the person’s history of wishes and desires as per section 32 of the Mental Capacity Act (2005) Participants were included if consultees felt they would wish to take part and wouldn’t be distressed by the research. In addition to initial consent and capacity decisions, we followed Dewing’s use of process consent (2008), monitoring ongoing consent for each activity at every research visit. We reiterated what was involved in taking part in the research and confirmed that participants were happy to proceed, remaining alert to any verbal or non-verbal indicators of reluctance to take part.

Supporting Inclusion and Participation: Opportunities Offered by Linguistic Ethnographic and Diary Methodologies

In this section, we describe the ways in which participant inclusion and participation were meaningfully supported by the methods and methodological approaches we used. We use examples from our dataset to show how the approaches created new avenues for understanding medicines practices.

Recruitment

Maximising inclusion for people at all stages of dementia was a key consideration in the design of the study. The linguistic ethnographic approach, with its inherent focus on interaction-in-context, enabled inclusion of people with moderate stage dementia in two ways. Firstly, recruiting in dyads created a situation in which informal carers, having made a commitment themselves to be involved, were highly engaged with supporting the person with dementia through the recruitment process. Our knowledge of the participants derived from later observations suggests it is unlikely that eight out of the nine participants with dementia would have responded to contact by email or phone if they had been required to do so alone. Secondly, using video to collect data on interactions enabled inclusion of participants with more significant communication and cognitive difficulties, who made greater use of non-verbal communication to share their experiences. For example, one participant had significant word-finding difficulties, combined with reduction in the volume of her voice. These challenges would have made participating in interviews impossible, but her considerable strengths in using facial expression, intonation and gesture as modalities to express feelings and give opinions could be shared successfully through video.

Developing Relationships

Conducting repeat ethnographic visits over six months to one year afforded more meaningful research relationships than would be allowed in a single research encounter. This methodological commitment aligns well with recommendations by scholars in dementia research advocating to ensure that people with dementia can fully participate in research (Murphy et al., 2015; Phillipson & Hammond, 2018; Shannon et al., 2021; Webb et al., 2020). Over time, the strength of relationship between researcher and participants deepened, becoming evident through spatial and temporal shifts. Initial visits, for example, often took place in more formal spaces, often seated at a table; in these interactions LH’s sense was of being treated as a guest. As time went on, she was invited into kitchens, living rooms and gardens. Participants would go about their household activities during research visits: cooking; doing laundry; feeding or playing with pets; doing puzzles; organising pills into boxes; eating and drinking. She was invited to join meals and to help with small tasks, like making notes for participants during telephone calls from health professionals. This shift in both location (from what Goffman (1959) might call the ‘front stage’ to the ‘back stage’ regions) and opportunity to witness ‘ordinary’ daily activities suggested increased ease with the first author’s presence.

Additionally, when we came to the end of data collection, several participants volunteered extra involvement. In her final diary interview one participant said ‘… if later you end up doing a questionnaire or something…but if you do, we’d like, I think, we always can do a follow up questionnaire’. Some participants invited the lead author to visit again socially, suggesting she ‘drop in for a cup of tea if you’re nearby’. This intimated participation in the research process that moved beyond the mechanics of data collection and reflected and encompassed the elements of social life, mediated by a more equal relationship between researcher and participants. This, it should be noted, was not an uncomplicated aspect of participation, and is one we reflect critically on (see Tensions, dilemmas and reflections below).

Timing, Pace and Content of Co-Constructed Knowledge

Participants set the timing and pace of the research and chose, to an extent, what to share and what to make relevant. By conducting research in the home (instead of, for example, a university) we could adopt a flexible approach to timings of visits, fitting around the strengths and routines of the person with dementia rather than expecting them to accommodate the timetabling constraints of an institutional setting. LH visited one participant pair at nine o’clock in the evening, for example, to coincide with the taking of night time medications. Participants set the times and dates of visits, and access to flexible communication channels meant they could easily rearrange scheduled visits to accommodate the shifting patterns of ‘good days and bad days’ (Rockwood et al., 2014) they experienced. For instance one participant had significant changes in her sleep pattern during the study and was intermittently too drowsy to engage in visits. We accommodated this by setting tentative appointments for afternoons but agreeing a system of calling in the late morning to ascertain whether to visit or reschedule.

The physical and conceptual location of the research ‘site’ was also flexed in ways which supported the strengths of participants with dementia. One participant invited LH to accompany him on his daily walk around his neighbourhood, extending the boundaries of his social life beyond his house. As we walked, he pointed out the current and former homes of friends and family and recounted meals in local restaurants. Another participant who had recently returned to her Christian faith after many years, invited the first author to watch her ‘testimony’ (a reading of her handwritten story that detailed her path back to faith) that she had given to members of her church and recorded on her mobile phone. In doing so, she opened a window onto her social life within the church, revealing herself as a valued, articulate member of the community, the camera panning to her friends in the audience, smiling and applauding. In this way participants with dementia also made visible their participation in social life over time, narrating a rich history that included past selves and others, as well as adding meaningful detail to their current lived experience.

In common with Bartlett (2012) we found that diary entries handed control to participants to decide how they ‘represented themselves’ (p. 1722). Several participants with dementia used their diaries to make visible aspects of their social selves which were not evident during research visits. In this sense the diaries extended the ‘reach’ of the observations and created space for participants to foreground topics which were important to them. One participant explicitly evoked a busy social life in his audio diary:

‘We have been very sociable. We’ve got a group of old friends, men and women in their late 60s or 70s or 80s and we see each other very often because it keeps us cheerful and we kid ourselves that it keeps our brains alive. Some of the things we’ve done in the last two weeks which are largely related to keeping our brains alive and having fun have been visits to a French restaurant…’

Diary entry, 13th December 2021

This extended the relatively sparse view of his social life that was made visible during research visits and provided a counterpoint to the subjective impression of the participants’ ‘sadness’ and his explicit reflection that his diminishing skill with technology ‘makes me very depressed’.

Being at Home: Space, Objects and Senses

Space

Conducting research visits in participant homes had logistical benefits for participants, supported unanticipated moments of participation and offered methodological insights. Logistically, participants were spared from planning and scheduling time for travel; indeed, at the point of initial contact many participants said they wouldn’t have been able to attend a hospital, for example. Furthermore, data collection took place in 2021–2022 during the COVID-19 pandemic; being at home reduced risk of exposure to infection. Conducting the research in an institutional setting would also have precluded participants with dementia and LH from having interactions without their informal carer present, as all but one did not travel independently. The spontaneous walking interview described above provided an occasion for the participant with dementia to participate in conversation without his spouse, who otherwise tended to take the lead.

‘We wander, he takes the role of local guide. He’s much chattier outside of the house, with just the two of us. Perhaps also the ease of walking side by side. We don’t hurry (…) there are times when a word doesn’t come for a beat, sometimes longer, 2-3 seconds. Waiting feels easy…’

Fieldnotes, 22nd June 2021

By creating a different context in which to hold the conversation (outside of the usual dyad, and beyond the home) the participant had an opportunity to demonstrate his competence as a conversation partner. He led us on a route that passed his GP practice and pharmacy, creating an opening to talk about his medicines in relation to these places. In doing so, he repositioned himself as a knowledgeable actor in managing his medicines. As Brannelly and Bartlett (2020) have argued, being in motion can elicit thoughts and practices that people with dementia may otherwise not share.

Institutional interview settings offer limited scope for participants to use movement to tell stories and recount experiences, marginalising people with more severe dementia who have greater need to use non-verbal methods of communication. Setting this study in the personal space of the home allowed participants to express themselves using embodied forms of communication. For example, one participant who had moderately severe difficulties with expressive language and speech guided the first author through her house to trace the paths of her medicines routines. The discussion started in the living room. Her husband recounted the daily routines of medicines taking, looking to his wife for affirmation or disagreement. As the talk turned to the objects themselves, they invited the first author to view them in situ, upstairs.

We walked out of the living room, up the stairs, through the bedroom and into their ensuite bathroom. We gazed jointly at the pillbox and the medicines cabinet, tangible shared points of reference which supported both participants to tell the stories of her medicines. This fieldnote documents the subjective sense of the easy, natural interaction that was co-constructed in this space:

‘Despite the oddness of the setting, in their ensuite bathroom, with me essentially a stranger to them and (participant name) with her significant difficulties communicating, the conversation is easy and I have no sense of tension or awkwardness, rather a sense of collaboration and partnership’.

Fieldnotes, 21st June 2021

That this couple could create such a comfortable interaction in an unusual setting, spoke to their resourcefulness in joint storytelling, despite significant communication challenges.

Material Objects

Participation was also facilitated by ensuring participants had access to their own everyday objects and technologies, which they connected with to explain experiences and augment conversation. One participant with dementia, who experienced delays and failures in retrieving words, described his medicines routine to the first author during a visit. When he became ‘stuck’ for a word, he reached across the table to pick up a delicate, pearlescent pot. The pot contained handwritten days of the week on separate cards, which comprised part of a highly personalised system for tracking the twice daily act of swallowing his pills. Removed from his home, it is unlikely we would have reached a description of this system and, as Lee and Bartlett (2021) have noted, not having access to his personal objects would have effectively muzzled his capacity to express himself (2021). Hydén (2014) has described the ways in which material objects can also function as a memory support (2014); this was echoed many times in this study in the form of books, photographs and a holiday journal, amongst others.

Objects also created insights by providing opportunities for participants to display their multiple selves. One participant with dementia played the piano during a visit, a new hobby she had worked hard to acquire. The demonstration of her skill underscored the self she presented when we talked, a self who continued to grow, learn and change, challenging the dominant discourse of a person with dementia in an inexorable decline. At a breakfast visit, another participant delighted in demonstrating the use of an archaic kitchen tool, designed for the sole purpose of removing the top from a boiled egg.

Reflecting on this episode, we noted the individuality and creativity expressed and celebrated by the pair through the use of this object. This led us to rethink and reframe their idiosyncratic medicines routine, which relied on unconventional objects and practices to organise and monitor the pills and seemed susceptible to error. Within the context of wider observations such as the breakfast episode and their stories of self-reliance, these medicines routines could be reimagined as expressing a value of individualism, articulated via treasured household objects. Material objects thus brought about insights into participants’ values, creating new routes into understanding their medicines practices, a phenomenon we have described elsewhere (Swinglehurst & Fudge, 2021).

Senses

Using an ethnographic approach to contextualise the linguistic micro-analysis extended the sensory aspects of observations, beyond what could be seen and heard. This shaped the ways in which visits and interviews were co-constructed between the researcher and participants, and the topics that were discussed. For instance, visiting one participant pair in winter, the first author’s fieldnotes mention that ‘the room is cold, really cold’ and as she left ‘I realise how desperately cold I have got, quickening my pace back to the station in an attempt to get warm’ (Fieldnotes, 14th January, 2022). This embodied experience contributed to an emerging interpretation of financial difficulty, which in turn shaped the trajectory of talk in visits. Indeed, the carer–participant later described in depth the bureaucratic complexities involved in having paid employment whilst receiving carer benefits, how this complexity restricted their income and subsequently the care she could provide. Thus, integrating sensory observations contributed to this line of inquiry about finances, opening up new insights into the challenges of living with dementia and multiple health conditions.

Paying attention to participants’ sensations also brought into focus the ways in which carers cultivated and employed a range of embodied resources to provide care. One carer described an ongoing interplay between routines to support her father’s level of activity and independence, and maintaining a degree of vigilance for things that may go abruptly or gradually wrong. This was made manifest during her diary interview when she interrupted herself mid-sentence to turn her ear towards the window, outside which her father was gardening, adding:

‘I have to it’s (…) like that, I’m always one ear here and then one ear there ‘cause I have to keep the alertness going… by the movements, like how harsh he’s moving I can tell if he’s a bit worked up, so, at the moment he’s being ok, you know, not much going on, he’s just bored ‘cause it’s gentle, but if it was to get more rushed and more harder then I know yeah, he’s getting angry at something for no reason’

Diary interview, 14th May, 2022

Another carer described the sequence of events that led to her seeking diagnosis and treatment of a urinary tract infection for her mother. She described entering the bathroom after her mother and noticing an unusual smell, alerting her to the possibility of infection in the absence of any other symptoms. Integrating the explicitly evoked or implicitly noted sensory experiences of the carer–participants thus sharpened our focus on the tacit skills and knowledges that carers acquired and honed as they cared for their family member.

Discussion: Tensions, Dilemmas and Reflections

Having set out the benefits for inclusion and participation for people with dementia by using these research approaches we turn now to a discussion of the tensions and dilemmas we experienced during the research process. Efforts to increase the participation of people with dementia often requires considerable commitment and additional work for carers; in some situations the chronic work of caring may make this impossible. In this study, two carers did not have the capacity to support the cared-for person to engage with keeping a diary. This represented a tension in the method; the diaries, whilst designed to create opportunities for participants to make any aspects of their lives and selves visible, did involve an investment of time to do so. Weighing this balance of time and effort was different for each dyad and participants’ capability to take part fluctuated over time. Some participants who initially expressed enthusiasm for diary-keeping later found it wearying or too complicated to fit into their daily routines. Navigating these tensions created occasions for the research team to practice reciprocal and respectful relationships with participants (Thambinathan & Kinsella, 2021). For example, a participant with dementia, a retired engineer, was keen to keep a diary but felt that without daily reminders he would forget to write entries. He collaborated with LH to develop a solution, suggesting she send a text message to his mobile phone every evening. Engaging with this participant-led solution offered a reciprocal daily commitment on the part of the researcher to carry out a particular task at a specific time of day. In turn, this offered the researcher an experiential understanding of the work that participants had to do to incorporate the diary routine into their lives.

During the design and implementation of the research study we had many occasions when we needed to be flexible and adaptable, to turn a research ‘misfit’ into a ‘fit’ (Webb et al., 2020). Webb and colleagues adopted Garland-Thomson’s (2011) critical concept of ‘misfitting’ as a lens to analyse the social practices of research processes with people with dementia. Garland-Thomson describes a misfit as ‘an incongruent relationship between two things: a square peg in a round hole. The problem with a misfit, then, inheres not in either of the two things but rather in their juxtaposition, the awkward attempt to fit them together. When the spatial and temporal context shifts, so does the fit, and with it meanings and consequences’ (2011, pp. 592–593).

We also found this concept useful for thinking through the disjuncture between the research materials and processes and the ‘particularities’ (Garland-Thomson, 2011, p. 592) of our participants’ lived embodiments. Although we made meaningful efforts at the design stage, in collaboration with people affected by dementia, to develop study processes and materials that were sensitive to a range of real-world situations, when we put them into practice they didn’t always ‘fit’ to our participants. Handing the camera over to participants to make video recordings at home, for example, presented some unanticipated technical and temporal dilemmas around how and when to record. In other words, a misfit between technologies, time and embodied skills. On the whole these could be mitigated by adapting the misfitting research timelines and processes so that they fitted with participants’ spatial contexts, temporal routines and their particular skills and knowledge. This process of ‘fitting’ was different in each case; sometimes identifying alternative recording equipment or a different stand for the camera, at other times having problem-solving discussions with participants about likely scenarios in which the topic of medicines might be raised. Occasionally, participant-led recording was impossible and the researcher recorded conversations about medicines during research visits instead, introducing a third voice into the conversation (in some respects, of course, the camera already represented a disembodied third party to the talk). Initially this felt like a methodological trouble, a barrier to collecting ‘natural’ interactions between participants. On reflection, the physical presence of the researcher also generated new occasions to explore how participants positioned themselves relative to each other and the researcher in a dynamic situation. Misfitting the research process in this way thus both responded to the needs of the participants and created novel data and insights.

We also reflected on the tension in the relationship developed between the lead researcher and the participants. As Kara (2022) has identified, qualitative researchers are customarily advised to use their interpersonal skills to develop rapport with participants and engender a meaningful relationship. In our study the affective quality of the relationship between the researcher and the participants was crucial. On one level we felt this ‘affective collaboration’ (Lydahl et al., 2021, p. 515) was affirming and supported participants to inhabit roles which we imagined felt comfortable to them, such as ‘friendly host’ to the ‘guest’ researcher, as well as aiding the ‘doing and production of data’ (p. 515).

In reflecting on this, we noticed two patterns that caused us to consider whether we were straying into what Duncombe and Jessop (2012) have called ‘faked friendship’ (p. 117) in research relationships. Firstly, we were surprised that on the whole, participants were unperturbed by having research visits at home at a time of fluctuating ‘social distancing’ guidance during the COVID-19 pandemic. We questioned whether a lack of recent social interaction made participants keener for the novel company of the researcher, and that we were unintentionally exploiting that to gain access. Of course, participants were not powerless in this situation, arguably having more agency than the researcher to direct conversation to their topics of choice, and increased authority to propose actions in their own homes. This perhaps contributed to the second noted pattern, of participants extending social invitations to the researcher. These offers could neither be accepted nor reciprocated, provoking a sense of discomfort and some guilt at co-constructing a space in which social invitations could be extended. The tension here, to be friendly but not too friendly, to work towards reciprocal relationships but only reciprocate in areas within the parameters of the research, such as timings, processes and research objects, and not within the parameters of friendship, such as invitations, gifts or trading confidences, was an ongoing concern. We held in mind Duncombe and Jessop’s suggestion to ‘continue to worry about these issues as they emerge in each piece of research’ (2022, p. 119) and strived not to shelter behind the relatively uncomplicated biomedical ethical frameworks, which, in adhering to more positivist research ethics norms, can flatten some of the nuanced ethical dilemmas inherent in qualitative research.

Implications

We used ethnographic and participatory methods to examine the interactions and practices of people with dementia and informal carers. Future research to explore daily practices may benefit from using a similar ethnographic approach in the home to complement accounts of practices that are elicited using interviews, focus groups or questionnaires. Using tangible objects of reference (whether these were familiar objects or the product of participatory methods) helped elicit participant stories, scaffold conversations and reduce the need for participants to draw on their memories. We would recommend researchers consider how participants with dementia can access salient objects when considering methods that explore their daily lives. Paying attention to the practicalities of communicating about and conducting the research, and continually reflecting and acting on these practicalities, is crucial to flexibly adapt them to participants’ needs and maximise inclusion for people with dementia.

This study corroborated the view that extended time to develop relationships with people with dementia is crucial (McKeown et al., 2010; Phillipson & Hammond, 2018; Webb et al., 2020). We note that recommendations for methods that call for adaptability in the ‘field’ can sometimes be poorly fitted to existing research funding and ethics processes and frameworks, in the UK context at least. In our study this required a great deal of consideration and anticipation in applications for sponsorship and funding, but was ultimately fruitful. Adopting a flexible approach is vital in enabling respectful and meaningful research practices with people affected by dementia.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is supported by the National Institute for Health and Care Research (NIHR300559).

ORCID iD

Lucie Hogger

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Supporting Inclusion and Participation for People Living With Dementia: Ethnographic and Participatory Research Methods

Abstract

Keywords

Introduction

Medicines Management Research Involving People with Dementia

Linguistic Ethnography: An Overview

Modified Diary Interview Method: An Overview

About the study

Background

Participants

Research Process

Ethical Considerations

Supporting Inclusion and Participation: Opportunities Offered by Linguistic Ethnographic and Diary Methodologies

Recruitment

Developing Relationships

Timing, Pace and Content of Co-Constructed Knowledge

Being at Home: Space, Objects and Senses

Space

Material Objects

Senses

Discussion: Tensions, Dilemmas and Reflections

Implications

Footnotes

Declaration of Conflicting Interests

Funding

ORCID iD

References