Working one-to-one to develop a personal theory
Living at home with semantic dementia: Creating a life storybook with Ruby and Brian to support personal identity and well-being
Living at home with semantic dementia
Creating a life storybook with Ruby and Brian to support personal identity and well-being
Jackie Kindell, Ray Wilkinson and John Keady
This chapter describes a participatory case study drawn from research exploring everyday interaction in semantic dementia (Kindell, 2015). This PhD study worked closely with people living with semantic dementia and their family members to understand their particular challenges with everyday conversation and, following on from this, to co-design an individually tailored social intervention to enhance interaction at home using a life story' approach. A novel combination of conversation analysis and narrative analysis was used to provide both in-depth assessment and explore outcomes at an individual, relational and family level. This chapter will first outline the features of semantic dementia before describing the participatory case study and creative social research methods used to create the personalised life story resource in more depth.
What is semantic dementia?
Semantic dementia is a less common dementia that progressively affects communication and behaviour. The condition has been recognised as one of the subtypes of fr ontotemporal dementia (Neary et ah, 1998) with a more recent classification describing it as ‘the semantic variant of primary progressive aphasia’ (Gomo- Tempini et a!., 2011). Precise figures on the number of individuals affected by semantic dementia are not available. However, frontotemporal dementia is thought to account for between 5% and 10% of all cases of dementia with this percentage figure including semantic dementia, non-fluent primary progressive aphasia and behavioural variant frontotemporal dementia (Alzheimer’s Disease International, 2009).
Semantic dementia presents differently from Alzheimer’s disease hi that individuals experience problems with language abilities, rather than changes in memory, leading to problems with finding words when talking and in understanding (Hodges and Patterson, 2007; Kertesz et ah, 2010). Research into conversation skills in this condition is sparse, although speech in conversation has been described as ‘garrulous, excessive, disinliibited output’, with individuals
‘perseverating on their own agenda and not stopping to listen’ (Kertesz et al., 2010, p.487). Another study, led by the lead author Jackie, described how, ‘Doug’, a man with advancing semantic dementia, had a repeated practice of acting out scenes within conversation using direct reported speech (the actual dialogue of himself or others), changes in vocal pitch and loudness, body posture and facial expression (Kindell et al, 2013). This enabled Doug to take part in conversations and the listener to gain at least some meaning from him despite significant linguistic difficulties, with his wife, Karina, talking about her ability to get ‘the general gist of what’s going on’ (Kindell et al., 2013, p.506).
Intervention studies have most often targeted the person with semantic dementia (Taylor et al., 2009); for example, addressing challenges with word finding using word relearning techniques (Jokel et al., 2014) with less focus on therapies that involve both the person with semantic dementia and their family members in interactional real-life settings. There is also a lack of understanding as to how therapies popular in the broader field of dementia care, including reminiscence and life story work (Woods et al, 2012; Gridley et al, 2016), can be applied to semantic dementia.
The participatory case study work described in this chapter was part of a PhD study working with five couples where one partner had a diagnosis of semantic dementia (Kindell et al, 2014; Kindell, 2015; Kindell et al, 2019). Ray, with skills in conversation analysis, and John, with his skills in life story, narrative and case study work, acted as the supervisors to Jackie’s PhD study. The study aimed to gam an in-depth insight into each couple’s everyday experiences at home around interaction and then to use this knowledge to plan and deliver an individually tailored life story intervention to enhance interaction in the home situation. Participants were recruited via memory clinics and community mental health services in the north-west of England. Inclusion criteida were fairly broad including: the person had a confirmed diagnosis by a specialist; advice regarding communication was required; and the person needed to be able to sit and concentrate long enough to engage in research tasks. This meant that participants recruited into the study were at various stages of semantic dementia and were representative of the range of needs supported by local mental health sendees.
A mixed methods participatory case study design, combining conversation analysis and narrative analysis, allowed for the flexibility and creativity required to deliver an individualised social intervention rooted in biographical meaning. This gave the project the freedom to work with participants in the way they felt most comfortable and to co-design the most appropriate social intervention, rather than rigidly follow a research protocol. Conversation analysis was chosen to directly observe and analyse unique patterns of interaction at home in each couple, with narrative analysis used alongside to understand the broader context in which these interactions took place, including the impact of semantic dementia on their daily lives.
Conversation analysis is a naturalistic observation-based, qualitative research method that delivers a procedure to gather and analyse naturally occurring talk (Sidnell, 2010). Importantly, there is an equal focus on both parties within the interaction and emphasis on both communicative success and communicative breakdown (Beeke et al., 2007; Perkins et al., 1998). Audio and video recordings of interactions made in the home setting allowed for the detail needed to understand each couple’s unique interactional situation including any recurring practices and behaviours. These were transcribed using the principles of conversation analysis (Jefferson, 2005) and the associated transcripts were viewed alongside the raw data with recurring features noted using NVivo 10. Collections of transcripts containing these features were then made, which were subjected to further analysis and discussion with the research team (Jackie, Ray and John).
As discussed, narrative analysis was used alongside conversation analysis. Semi-structured interviews enabled an in-depth exploration of participant’s experience, as told through stories of their lives, to make sense of the interrelationship between biography, self and identity as a couple (Williams and Keady, 2008). This helped understand the broader psychosocial aspect of their lives with semantic dementia and helped uncover why certain conversation features evident in the data were significant to them. This ensured that the social intervention was embedded into a context that took account of relationship issues, past and present, and the broader day-to-day issues of living with semantic dementia. Narrative analysis began in the assessment phase, continued into the life story work and helped understand outcomes of the intervention. In addition, field notes also provided observational and reflective data. In all, 14:08 hours of audio data were recorded and 00:57 hours of video data (Kindell, 2015).
In this chapter, we will share the key features of one participatory case study from Jackie’s PhD study, focusing on how Ruby (a person living with semantic dementia) and Brian (her husband and care partner for a number of years) co-cre- ated an accessible life stoiybook that drew on key storylines of Ruby’s life so that she could continue to uphold a sense of identity and personal well-being in her everyday life. The names ‘Ruby’ and ‘Brian’ are pseudonyms and provide anonymity to the participants in line with the study protocol (Kindell, 2015). All necessary ethical permissions to conduct the participatory case study were obtained and will be addressed in a future sub-heading. Through the peiiod of engagement, process consent (Dewing, 2007) was used by Jackie at each visit to ensure that Ruby was fully informed about the study and continued to consent to participate.
Ruby (age 71 years) and Brian (age 74 years) had been married for 52 years and had two sons and seven grandchildren, but their daughter had sadly passed away a number of years prior to the study. They had both grown up in the local area and had a wide circle of friends whom they would often meet in the early evening or at the weekend for a drink and a chat in the local public house. Ruby had married Brian when she was 19 years old and, apart from the odd part-time job, had focused her attention on bringing up her children and taking care of the house, as Brian had often worked away. Ruby had been diagnosed with semantic dementia five months before engaging with the study and so she and Brian were in the process of coming to terms with the diagnosis and the implications of this, including issues of disclosure of her diagnosis to their friends. Over an eight-month period, 15 visits to their house allowed for the researcher (Jackie) to build a relationship with Ruby and Brian to understand the issues they were facing with interaction and deliver an individually tailored social intervention to address these.
Brian repoxted that he had instigated the nxenxory assessment and Ruby had, very reluctantly, attended and when she was given her diagnosis, Brian recalled: ‘I think she was a bit stunned ... you know, she didn’t really think there was anything wrong with her’. When interviewed alone, Ruby indicated that she was aware that she had problems reuxenxbeiing people’s names but she did not want to talk about her difficulties; equally, though, she did not seem particularly upset by them either. It was, therefore, difficult to ascertain how much insight Ruby had into her diagnosis and it was also unclear as to whether it woxxld be helpM to encourage her to understand nxore. Brian thought that Rxxby would not want any information about her condition: ‘No, she wouldn’t want to know that, as long as she feels that she’s well’.
Ruby’s difficulties with language were not ixmnediately noticeable in conversation. Her speech was fhxent, but she often talked around words or xxsed vague terms. She had subtle problems in understanding, including missing the point of jokes or requiring Brian to repeat himself. Brian felt he was able to cope with these difficulties; however, his more pressing concern was managing issues at the conversational level with two pronxinent issues: first, ‘holding the conversational floor and topic drift’, and second, ‘recurring topics’. These two issues will now be explored in a little more depth.
/. Holding the conversational floor and topic drift
Brian repoxted that Ruby had developed a habit of talking at length aixd failing at times to hand over the conversational floor, as he explains:
I said [to Ruby] when you’re talking, don’t have a long conversation, have a short conversation, I think, you know, she’ll find it better. Because sometimes, when she’s talking for quite a time, she’ll get mixed up.
Brian reported that the way he managed this was dependent on the situation. At home he said: ‘If it was [with] me, I would tell her, you see, don’t be going on too long or something like that’. But things were more difficult when they were out together:
If I’m sat at the side of her, I’ll try and give her a nudge, but it doesn’t always work that. I think if it’s not, if she’s not making any errors in speaking, I just let her ramble on. But if she made a mistake, I wouldn’t interrupt her in front of people, I think I’d tiy and cover it up by interjecting into her speech.
This was a particular problem when they were out with friends as this marked out her conversation as different. This caused embarrassment for Brian and, given they had not disclosed her diagnosis to others, this was problematic.
Within the conversation data there were numerous examples where Ruby talked at length, often drifting from the question she began to answer or containing detailed information not necessarily relevant to the question or the point of her stoiy. For example. Ruby told a story where the main point was that she missed the bus home one night and had to walk; however, also present in the story were large amounts of additional detail about the bus, the bus stop and step-by-step details about the location of her house. As the listener to this stoiy, Jackie asked questions to clarify events, for example, when the story took place or attempted to summarise important points that seem to have got lost in the detail, for example, ‘so you missed the bus home?’ The numerous steps in the story are linked with the use of ‘and’ and ‘and then’.
Ruby, as Brian indicated, was not always aware that the listener was struggling to follow her talk or that the extra details were not essential to the storyline, often obscuring the point she was trying to make and incrementally drifting away from the topic. There were a number of instances where Brian would attempt to close the topic down and move Ruby forwards by saying ‘go on, let’s get through these questions then’ or ‘anyway, that’s all in the past’. This would, on some occasions at least, bring Ruby back to the topic at hand.
2. Recurring topics
In addition, Brian had noticed that Ruby had a tendency to tell the same stories, often to people who had heard them before:
You know the story about how I met her and took her to York and she threw her boyfriend out, and that kind. She still tells that to people who know about it. So she’ll still repeat that.
The conversation data illustrated Ruby not just repeating certain utterances, or questions, but telling whole stories over and over again, on a number of occasions, without awareness of this. Brian would signal this with statements such as T think you’ve heard this before’ or ‘I think you’ve told her this before’ with Jackie signalling the delicate nature of this with utterances such as ‘I’d like to hear it again though’ or ‘I don’t remember, carry on and tell me’.
The research field notes recorded how animated Ruby became when telling a story and how she acted out the dialogue of speakers using direct repoxted speech: ‘She doesn’t just tell you about the events but she almost acts them out, with great emotion’. Brian was unable to recall if this animated style had been a longstanding habit or had arisen since the onset of semantic dementia. It was sometimes hard to follow Ruby’s train of thought and the stories very often tinned to repeated negative content including complaints about her friend, previous negative incidents and arguments from the past. Initially, this was not a problem and Jackie, as the academic co-researcher, had the time to listen and also wanted to gain a conversation sample. Accordingly, to Jackie, these sequences were initially novel. However, by spending more time with Ruby and Bxian, it because apparent that across the weeks the conversations began to repeat themselves. Therefore, the long complaint stories with significant amounts of repeated detail began to give a feeling of dis- coimection within interaction and gave clarity to the descxiptions Bxian relayed.
Formulating and delivering the intervention
Formulating the intervention involved considering both Ruby and Brian’s perspectives both individually and as a couple. In terms of her diagnosis and respective interventions, there was a danger that Ruby was being swept along by events not of her choosing and it was therefore important not to impose information about semantic dementia upon her. She was, however, very happy to talk about her life and so life story work was presented as an intervention that potentially would be both acceptable and enjoyable and focused directly on Ruby in a positive way. It also presented an oppomxnity for Brian and Ruby to re-connect as a couple.
Life story work
Life story work took place over eight sessions and the format used to present Ruby’s life story was discussed with them both and it was decided to make a life storybook. Ruby and Brian sourced a large bag of photographs and these were used to further explore Ruby’s memories of past events and what she liked to talk about with Brian. Jackie copied relevant photographs and sessions were recorded so that when captions were typed under the photographs in the life storybook, the audio recording helped ensure all items were described using Ruby’s exact words. Draft materials were shown to thenx at the next session to ensure this was an accurate reflection, names were spelt correctly and the layout was acceptable.
It was important not just to concentrate on facts or events such as jobs, weddings, holidays etc., but to attempt to understand crucial aspects of Ruby’s identity by uncovering relevant themes recurring in various storylines. For example, it became clear that Ruby’s appearance was very important to them both including being well dressed, attractive and young looking for her age. There were stories of Ruby being the first person to wear a mini skirt in the area, being mistaken for her friend’s daughter and other men signalling then attraction to her, even when Brian was present. Ruby’s love of high heel shoes was legendary in their family and even on the beach, or going for a walk in the mud, Ruby would still wear her heels as she recalls:
I never had flats, never [laugh] ... all cobbles and everything. Everybody
were looking at me. Oh! And I never fell off them or anything.
A photograph of Ruby wearing shorts and heels on holiday was used alongside a photograph sourced from the internet of a woman walking in the mud in high heels. This always made Ruby laugh and she described how she used to wear heels everywhere. In this way, a range of photographs was used to elicit relevant stories from Ruby. An extract from her life storybook is contained in Figure 2.1, with photographs of Ruby removed for anonymity.
Whilst Ruby was able to recognise people in photographs and aspects of her appearance, even from some time ago, recalling and understanding the location, however, was often a problem. Brian would attempt to prompt Ruby, but even when given the place name, she remained unsure about the location. Holiday locations were particularly problematic, although Ruby did have a general memory' of various holidays. For example, she could not say which cruise picture was which location, even when prompted, but she enjoyed talking about cruise holidays, particularly getting dressed up for the ship’s entertainment. It was, therefore, not that photographs did not trigger any memories, but that aspects of the details, particularly locations, appeared to have been lost. Therefore, photographs of them both on cruises were included but with general captions such as ‘getting all dressed up - on a cruise’ (Ruby’s picture) and ‘Brian on board ship - these are taken on one of our cruises’ (pictures of Brian in his tuxedo). Jackie discussed with Brian the need to focus on Ruby’s memories, rather than push for facts like place names.
Eventually, there were a large number of potential pages and, following discussion, the decision was taken to make two books and find some meaningful way to organise them. The choice was either doing them chronologically or in another format. The materials were therefore laid out and the transcripts were consulted to see how stories naturally linked in Ruby’s conversation (see Figure 2.2).
For example. Ruby would often talk about hobbies as a child and then explain why she had to give those up because of illness in the family, before moving on to talk about her family at that time and her brothers and sisters now. The materials were then organised in that order with each chain, or thread in the conversation, reflected in this way. Thus, the books aimed to be a representative method to facilitate Ruby’s own stories, both now and potentially in the future with the progression of her condition. A5 books, with removable plastic wallet pages, were used with a picture of ‘glamorous Ruby’ on the front cover. A final pilot of
Figure 2.2 Organising materials (blurred for anonymity).
the books was carried out to alter any spellings, information not conveyed adequately or picmres requiring re-ordering.
At the final session, Ruby was given her completed books, one with major personal storylines, another with ‘family events’ (weddings, birthday parties etc.) and a third virtually empty book (only one page completed) so that they could continue the process if they wished. We discussed the dynamic nature of life story work in semantic dementia and that whilst adding to the book was important, it might also be appropriate to remove any pages that were not meaningful in the future or led to distress. The format of the books allowed for this practice.
Ruby and Brian were asked about the life story work and Ruby reported: ‘it’s been smashing, yeah’ and Brian quipped: ‘it’s nice looking back, as far as I’m concerned, because I didn’t realise how good looking she was!’ Brian, in particular, indicated how important it was after the diagnosis to focus on what was important in life and remember all the good times they had together: ‘If you look back, it’s been a good lifestyle ... but, I mean, the nights out we used to have, it used to be, it was tremendous, we really did’ and he added:
I read something in the paper once about the advice someone would give to couples who were on the point of divorcing. The thing was, he said, forget why you’re divorcing now and think about why you got married in the first place. So what I’m saying is, not look at the problems which, like, have led to divorce, back to why you wanted to get married in the first place, how you got on and all the rest of it. I thought that was good advice that really, because it is and I think the same kind of things happening here, from my point of view anyway.
In describing the work in this way, Brian appeared to indicate that, at an emotional level, remembering the good times together had helped him during this present phase. Ruby’s reactions, in contrast, were more practical and the life story work had led her to retrieve and tiy on a number of her old clothes from the back of the wardrobe and attic. On my last visit, she proudly showed me the handbag from a photograph taken 40 years previously: ‘I got it out, I put it somewhere and I thought, I’ll start to use that now the summer’s coming’.
To gain more insight into how the life story books influenced interaction, video recordings and transcripts were explored from a life story interview without the book and a later session with the book to compare the conversations. Observations recorded in field notes were also studied. Again, recurring patterns within the data were sought within the two conversations. The aim was not to ascertain which conversations were ‘better’. Rather, the aim was to examine whether they were different and, if so, consider how and why the life stoiybook might be influencing interaction.
During sessions with the life storybook, field notes recorded less of the long sequences of talk from Ruby that were evident in earlier conversations without the book. It was as if the presence of the book was making Ruby stop and reflect as described in Jackie’s field notes at the time:
Ruby, for example, looks through the books, much like one would with a photo album, often at times in private reflection. This means she is not always making eye contact but looking down at the book. She does look up and make some conversation but it’s not as continuous as when she is talking without the book.
The books also encouraged more of the humorous side of Ruby’s character. She would roar with laughter when she looked at pictures of herself in high heels or her huge hoop earrings on holiday. In contrast, unstructured conversation often led to less positive topics, often topics of complaint, as this entry from Jackie’s field notes illustrates:
I have noticed that much of her spontaneous conversation is about problems in her life and the arguments she has had or is having with people, particularly her friend at the moment. The book seems to shift the conversation onto more positive topics about good times in her life or about things that she enjoys and so when looking through the book we see a different Ruby come to life.
The life stoiy structure certainly allowed for others to more easily introduce new topics into the conversation, therefore, moving the conversation forwards. For example, viewing video data using the life stoiybook, Brian can be seen to move
Ruby off fi'om a topic about an argument at the hairdressers that has become extended and rather circular by physically pointing back to the photographs present, saying ‘these’. This prompted Ruby to conclude the topic, put her glasses back on and resume looking at the photographs. A long conversation about an argument with Ruby’s friend in the pub was ciutailed by Jackie introducing pictures of her love for dancing as a child. Thus, Brian and Jackie are observed to use the life story materials to gently end an extended topic and this seemed to offer an indirect strategy to do this, which saves face for Ruby. In this way, the life story book provided a ‘conversational anchor’ - a strategy to maintain focus within the conversation. In addition, the structure of the life story book gently legitimised repetition of important stories for Ruby which was different from those stories that often occurred in spontaneous conversation.
The interactional data was also analysed quantitatively. The reason for this was to ascertain if there had been any changes in the balance of turns of talk between participants in the conversation. The first 42 minutes of each interview were analysed, as this was the length of the shortest interview. Turns at talk and number of utterances with direct reported speech were counted for each participant. A similar assessment was previously carried out in the exploration of dir ect reported speech in the conversation of Doug, described above (Kindell el al., 2013). This analysis revealed that whilst the long stretches of talk from Ruby appear ed to have been reduced in the life story situation, Ruby had slightly more turns at talk with the life storybook, illustrating that she was still actively involved in the conversation, as were Brian and Jackie. In the earlier interview, there were 67 utterances from Ruby containing direct reported speech, but when using the life storybook, this was reduced to ten utterances. There is also a reduction in the use of direct reported speech by both Brian (22 to 9) and Jackie (13 to 1) in each situation. This data is summarised in Table 2.1.
Whilst this analysis is problematic in that it compares two very different tasks, at two different points in time, it indicates that the presence of the life story book may change the dynamics of interaction, perhaps arising from the structure of the task. In particular, the reduction in direct reported speech from everyone, especially Ruby, may indicate that whilst a number of topics were covered in the life story books, this was at the expense of extended stories, where features such as direct reported speech are more likely to be displayed.
Table 2.1 Quantitative aspects of interviews and conversations with the life story book (LSB) Including turns at talk and utterances containing direct reported speech (DRS)
Ruby with LSB
Brian with LSB
Jackie with LSB
Turns at talk
Total number of utterances with DRS
Last, as the participatory case study work came to a close, the life stoiy work also provided a way to look to the future to explore personally relevant current and future activities to keep well, without specifically referring to dementia, a topic Ruby was reluctant, or unable, to discuss. This included considering activities Ruby particularly valued (getting dressed up and going to the pub for a dance) or Brian needed (his quiet drink on a Friday night) and activities that they had stopped doing (going for chives). Practical steps were identified to support these currently and sendees that could help in the future. Ruby and Brian indicated they wanted to continue the life stoiy' work themselves, for example, they talked about sorting through other old photographs and Brian reported he would take his camera out again. Brian emailed three months after the formal end of the study to say he had started taking photographs again and was putting them in the life stoiy'book.
The study required two levels of approval: from a National Health Sendee Registered Ethics Committee and from the National Health Sendee local organisation where Ruby and Brian were recruited. A significant challenge was accurately identifying whether Ruby had the capacity to understand and consent to the study, given her language difficulties. To help this process, pictures and objects were used to enhance the communication process, for example, taking the video camera to show the process involved. Particular attention was also required for the transit, storage and use of the video data as Ruby and Brian were identifiable in this data. Separate written consent was required for videos to be used in the dissemination of the study or for teaching purposes. Ruby and Brian, for example, agreed to take part in the study, with Ruby giving her own consent, but they did not agree for their videos to be used for these purposes.
hi Ruby and Brian’s case, they liked the idea of the life story work and chatted freely about tlieir lives from the first meeting. However, they did not want to video conversations themselves at home, as was outlined as an early task in the research protocol. They were happy to be recorded in conversation with Jackie but leaving the camera with them was problematic because they said it would make them feel awkward. Given that they were particularly enthusiastic to do the life stoiy work, the research tasks were reordered with video recorded at a later date, once they had got to know Jackie better. This, and an informal style that followed the conversational lead of Ruby and Brian, allowed for more naturalistic conversation data as advocated in similar studies (Hyden, 2011; Hyden, 2013). However, the research was unable to directly view and explore then conversation when they were alone together.
Issues of reflexivity
From a clinical perspective in her work within a community rarer dementia team, Jackie found Ruby and Brian’s case particularly interesting. Jackie had worked with other couples where one partner with semantic dementia had presented as
‘very talkative’ and this had caused the team significant challenges in knowing what to advise. Care partners would sometimes become very distressed by this and would avoid conversation for fear of setting up an extremely long conversation that they did not have the time, or the emotional reserve, to deal with. Both the literature and practice-based advice was of little help. So, for example, whilst ‘garrulous’ talk has been described in semantic dementia (Kertesz et al., 2010), there appears to be no literature exploring how to manage this area in daily life. Moreover, the general dementia literature has an almost exclusive focus on encouraging people living with dementia to talk (Ripich et al., 1999; Young et al., 2011; Manthorpe et al., 2015) with no discussion of the issues in those who might talk ‘too much’.
This presents as an everyday interactional dileimna, balancing the needs of both parties within the conversation. Indeed, in Jackie’s dementia team, this had led to different points of view. Some team members argued that the person with semantic dementia should be given as long as they needed when talking - this was person-centred. Others, in contrast, argued this was unfair on both the carer and the person living with dementia and that providing structure to the conversation was required and that this support was in itself person-centred. In addition, Jackie was troubled by the level of negative emotion conveyed at times in Ruby’s talk and she deliberately made the choice to seek out other positively affirming stoxies that Ruby could tell and include these, particularly those that displayed a more reflective and humorous side to her character.
Discussion and conclusions
This study has explored how a social intervention could be used in a participatory case study design with a couple living with a rarer atypical dementia - semantic dementia. Whilst life story work may potentially have a number of goals, a central feature of the work with Ruby and Brian was to examine how this intervention could influence social interaction. We have termed this interaction-focused life stoiy work (Kindell et al., 2019).
Communication in dementia can be studied from different perspectives. Hamilton (2005) desciibes that a comiected speech sample which maintains the integrity of the discourse can be taken and studied. However, she desciibes this monologue as ‘disembodied discourse’ that focuses only on the person living with dementia and takes no account of conversation as a co-constructed process, dependent on others (Hamilton, 2005, p.232). Hamilton argues that conversation, in contrast, is more like ‘a dance’, it is a co-constmcted process between two or more speakers, rather than a product of the person alone and, as in a dance, the moment-to-moment interdependence between speakers is of paramount interest.
Applying this to Ruby and Brian gives insight into the issues they are facing in everyday life because, whilst Ruby produces a great deal of speech at a discourse level, it is only when her communication is understood within conversation and, particularly, within ongoing conversations within relationships, that the issues become clear. Ruby is, for example, unintentionally breaching the principle of recipient design (Sacks et ah, 1974). This principle outlines that turns at talk should be specifically designed for the speakers present, including beating in mind what they already know, their interests and the questions they have asked. For instance, a speaker should not tell a recipient something that they are aware the recipient already knows or that the speaker has already told this recipient (Schegloff, 2007). In Ruby’s case, however, those present with her have heard her story previously, sometimes on a number of occasions.
In addition, Ruby regularly does not tailor her talk to the questions posed and to the unfolding topic. She is unaware as she holds the conversational floor that she incrementally drifts away from the topic and that others struggle to follow her train of thought. The recurring presence of features of complaint stories (Selting, 2010) adds to the sense of repetition. Also, relevant here is the work of Grice (1975), who describes maxims that underpin how individuals cooperate together to produce conversation. The maxim of quantity describes how one should tiy and be as informative as possible by giving as much information as the other person(s) present needs, but no more. Ruby, again unintentionally, flouts this maxim, with the unnecessary additional detail within her talk.
Conversation is a contexmalised social event and problems occur in dementia when speakers do not have the cognitive skills to fully attend to the contextual issues that develop, not just across single turns within a conversation, but more broadly across the entire sequence of the conversation and additionally across different conversations that stretch back over the person’s life and relationships (Guendouzi and Muller, 2006; Mikesell, 2010; Smith, 2010; Mikesell, 2014; Kindell et al., 2017). The lack of effective recipient design and attention to the maxim of quantity from a listener perspective (Sacks et ah, 1974; Grice, 1975) helps illuminate why Ruby’s conversation sometimes gave a feeling of disconnection. She could produce language, but what was lacking was her ability to tailor this to the in-the-moment context and to the specific people she was talking to and the conversational history she had with them. At times, Brian felt ‘talked to’ rather than ‘talked with’ and this impacted on their relationship. For Jackie, as the academic co-researcher, the full extent of this only became clear with longitudinal contact and a data set that included multiple conversations taken across time.
The social intervention, therefore, aimed to provide opportunities to ‘talk with’ and the life story work acted as a tool to deliver a greater sense of coconstruction in conversation. Importantly, the life story was not a chronological record of Ruby’s life, but instead, constructed from the outset as a resource to facilitate conversation and one that tapped into different aspects of Ruby’s character and identity. The intervention was highly individualised and as such the outcomes are best viewed within the case study. Brian’s comments revealed the work had reminded him of their life long emotional connections as a couple, whilst Ruby had a more practical reaction. The process also identified broader goals in terms of activities and care planning for the future that directly involved Ruby without necessarily discussing the condition, an approach that may be useful for others who lack insight or willingness to directly address the dementia present.
It has to be acknowledged, however, that Ruby’s case highlights some complexity within the impact of life story work on interaction. There were positive aspects to the work in that her talk was more focused, easier to follow, with a variety of topics and less of the negative complaint stories. However, Ruby used less direct reported speech to act out the dialogue and this may have occurred because of a reduction in extended storytelling. It is open to debate about whether this was positive or negative and how this relates to person-centred suppoxf in conversation. This participatory case study, therefore, provides an interesting insight into the multifaceted nature of conversation and the challenge of measuring the potential impact of social interventions such as life story work, where the gain in one conversational feature may lead to a loss in another. Arguably, it is only through participatory case study work that these individual features can be appreciated, as aggregated data may obscure such factors. It is also important to remember that life story work offers a structure that is different from casual conversation and whilst, in some instances, this may be helpful, there is also the possibility that the structure might be constraining. Perhaps one way through this may be to consider not that one activity is superior to the other, but that the life story structure gives interaction something different for Ruby and Brian, an alternative choice from everyday conversation. Thus, the life story book provided a tool they could choose to use to support their time together in a different way and an opportunity for ‘sharing’ in communication, a vital factor influencing relationships.
Key learning points from the method used
- • The mixed methods participatory design, delivered over a longitudinal period, provided a way to view and understand the everyday challenges in conversation that Ruby and Brian were experiencing.
- • This showed that production of language was not sufficient for interaction, in addition, speakers need to tailor their talk to the in-the-mornent context, including the specific people present and their shared conversational history'. Rirby’s case revealed how these skills can be disrupted in semantic dementia and the impact of this on relationships.
- • Life story' work, co-produced with the person with semantic dementia and their family, can enhance sharing in interaction but comparing atrd measuring outcomes is challenging due to the multifaceted nature of interaction.
- • Moving away from simplistic comparisons allows for a more realistic understanding of outcomes, showing that different activities may provide different opportunities for interaction. Intervention can offer couples living with dementia a wider range of choices for social interaction and this, in turn, can impact positively on relationships.
Three key references
Hamilton, H. E. (2005). Epilogue: The prism, the soliloquy, the couch, and the dance—The evolving study of language and Alzheimer’s disease. In Davis, В. H. (edAlzheimer's Talk, Text and Context (pp. 224-246). New York: Palgrave Macmillan.
Kindell, J., Keady, J., Sage, K. and Wilkinson, R. (2017). Everyday conversation in dementia: A review of the literature to inform research and practice. International Journal of Language and Communication Disorders, 52(4): 392-406.
Kindell, J., Wilkinson, R., Sage, K. and Keady, J. (2019). Moving from case to connection: Designing, co-producing and individually delivering interaction-focused life story work at home for people with semantic dementia. Ageing and Society, 39(10): 2322-2345.
A recommended future reading list
Hyden. L. C. (2013). Storytelling in dementia: Embodiment as a resource. Dementia: The International Journal of Social Research and Practice, 12(3): 359-367.
Kindell, J., Burrow, S., Wilkinson, R. and Keady, J. (2014). Life stoiy resources in dementia care: A review. Quality in Ageing and Older Adults, 15(3): 151-161.
Schrauf, R. W. and Mtiller, N. (eds.). (2014). Dialogue and Dementia: Cognitive and Communicative Resources for Engagement. New York: Psychology Press.
Alzheimer’s Disease International. (2009). World Alzheimer’s Report. London: Alzheimer’s Disease International.
Beeke, S., Maxim, J. and Wilkinson, R. (2007). Conversation analysis in aphasia. Seminars in Speech and Language, 28(2): 136-147.
Dewing, J. (2007). Participatory research: A method for process consent with persons who have dementia. Dementia: The International Journal of Social Research and Practice, 6(1): 11-25.
Gomo-Tempini, M. L., Hillis, A. E., Weintraub, S., Kertesz, A., Mendez, M., Сарра, S. F., Ogar, J. M., Rohrer, J. D., Black, S., Boeve, B. F., Manes, F., Dronkers, N. F., Yandenberghe, R. M. D., Rascovsky, K., Patterson, K., Miller, B. L., Rnopman, D. S., Hodges, J. R., Mesulam, M. M. and Grossman, M. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76(11): 1006-1014.
Grice, H. P. (1975). Logic and conversation. In Cole, P. and Morgan, J. L. (eds.), Syntax and Semantics: Vol 3. Speech Acts (pp. 41-58). London: Elsevier.
Gridley, K., Brooks, J., Bilks, Y., Baxter, K. and Parker, G. (2016). Improving care for people with dementia: Development and initial feasibility study for evaluation of hfe stoiy work in dementia care. Health Seivices and Deliveiy Research, 4: 23.
Guendouzi, J. and Muller, N. (2006). Dementia and Its Discourses: Approaches to Discourse in Dementia. Mahwah, NJ: Lawrence Erlbaum.
Hamilton, H. E. (2005). Epilogue: The prism, the soliloquy, the couch, and the dance—The evolving study of language and Alzheimer’s disease. In Davis, В. H. (ed.), Alzheimer's Talk, Text and Context (pp. 224-224). New York: Palgrave Macmillan.
Hodges, J. R. and Patterson, K. (2007). Semantic dementia: A unique clinicopathological syndrome. Lancet Neurology, 6(11): 1004-1014.
Hyden, L. C. (2011). Narrative collaboration and scaffolding in dementia. Journal of Aging Studies, 25(4): 339-347.
Hyden, L. C. (2013). Storytelling in dementia: Embodiment as a resource. Dementia: The International Journal of Social Research and Practice, 12(3): 359-367.
Jefferson, G. (2005). Glossary of transcript symbols with an introduction. In Lemer, G. (ed.), Conversation Analysis: Studies from the First Generation (pp. 14-31). Amsterdam: John Benjamins.
Jokel, R., Graham, N., Leonard, C. and Rochon, E. (2014). Word retrieval therapies in primary progressive aphasia. Aphasiology, 28(8-9): 1038-1068.
Kertesz, A., Jesso, S., Harciarek, M., Blair, M. and McMonagle, P. (2010). What is semantic dementia? A cohort study of diagnostic and clinical boundaries. Archives of Neurology', 67(4): 483-489.
Kindell, J. (2015). Interaction-Focussed Life Stoiy Work in Semantic Dementia: A Mixed Methods Study. PhD thesis: University of Manchester, UK.
Kindell, J., Burrow, S., Wilkinson, R. and Keady, J. (2014). Life stoiy resources in dementia care: A review. Quality in Ageing and Older Adults, 15(3): 151-161.
Kindell, J., Keady, J., Sage, K. and Wilkinson, R. (2017). Everyday conversation in dementia: A review of the literature to inform research and practice. International Journal of Language and Communication Disorders, 52(4): 392-406.
Kindell, J., Sage, K., Keady, J. and Wilkinson, R. (2013). Adapting to conversation with semantic dementia: Using enactment as a compensatory strategy in everyday social interaction. International Journal of Language and Communication Disorders, 48(5): 497-507.
Kindell, J., Wilkinson, R., Sage, K. and Keady, J. (2019). Moving from case to coimection: Designing, co-producing and individually delivering interaction-focused life stoiy work at home for people with semantic dementia. Ageing and Society, 39(10): 2322-2345.
Manthorpe, C., Young, T. and Howells, D. (2015). Demtalk: Dementia Toolkit for Effective Communication [Online], Available at: http://www.demtalk.org.uk/ (Accessed 15 April 2020).
Mikesell, L. (2010). Examining perseverative behaviors of a fi'ontotemporal dementia patient and caregiver responses: The benefits of observing ordinary interactions and reflections on caregiver stress. In Mates, A. W., Mikesell, L. and Smith, M. S. (ed.), Language, Interaction and Frontotemporal Dementia: Reverse Engineering the Social Mind (pp. 85-114). Oakville, CT: Equinox.
Mikesell, L. (2014). Conflicting demonstrations of understanding in the interactions of individuals with frontotemporal dementia: Considering cognitive resources and their implications for caring and communication. In Schrauf, R. W. and Mtiller, N. (eds.), Dialogue and Dementia: Cognitive and Communicative Resources for Engagement (pp. 147-180). New York: Psychology Press.
Neaiy, D., Snowden, J. S., Gustafson, L., Passant, U., Stuss, D., Black, S., Freedman, M., Kertesz, A., Robert, P. H., Albert, M., Boone, K., Miller, B. L., Cummings, J. and Benson, D. F. (1998). Frontotemporal lobar degeneration: A consensus on clinical diagnostic criteria. Neurology’, 51(6): 1546-1554.
Perkins, L., Whitworth, A. and Lesser, R. (1998). Conversing in dementia: A conversation analytic approach. Journal of Neurolinguistics, 11(1-2): 33-55.
Ripich, D. N., Ziol, E., Fritsch, T. and Durand, E. J. (1999). Training Alzheimer’s disease caregivers for successful communication. Clinical Gerontologist, 21(1): 37-56.
Sacks, H., Schegloff, E. A. and Gayle, J. (1974). A simplest systematics for the organization of turn-taking for conversation. Language, 50(4): 696-735.
Schegloff, E. A. (2007). Sequence Organisation in Interaction: A Primer in Conversation Analysis, Volume 1. Cambridge: Cambridge University Press.
Selting, M. (2010). Affectivity in conversational stoiytelling: An analysis of displays of anger or indignation in complaint stories. Pragmatics, 20(2): 229-277.
Sidnell, J. (2010). Conversation Analysis: An Introduction. Chichester, West Sussex: Wiley-Blackwell.
Smith, S. S. (2010). Exploring the moral bases of frontotemporal dementia through social action. In: Mates, A. W., Mikesell, L. and Smith, M. S. (eds.), Language, Interaction and Frontotemporal Dementia: Reverse Engineering the Social Mind. Oakville, CT: Equinox.
Taylor, C., Kingma, R. M., Croot, K. and Nickels, L. (2009). Speech pathology services for primary progressive aphasia: Exploring an emerging area of practice. Aphasiology, 23(2): 161-174.
Williams, S. and Keady, J. (2008). Narrative research and analysis. In Watson, R., McKenna, H., Cowman, S. and Keady, J. (eds.), Nursing Research Designs and Methods (pp. 331-340). Philadelphia: Churchill Livingstone Elsevier.
Woods, R. T., Bruce, E., Edwards, R. T., Elvish, R., Hoare, Z., Hounsome, B., Keady, J., Moniz-Cook, E. D., Orgeta, V., Orrell, M., Rees, J. and Russell, I. T. (2012). REMCARE: Reminiscence groups for people with dementia and their family caregivers—Effectiveness and cost-effectiveness pragmatic multicentre randomised trial. Health Technology Assessment, 16(49).
Young, T., Manthorpe, C., Howells, D. and Tullo, E. (2011). Developing a carer communication intervention to support personhood and quality of life in dementia. Ageing & Society, 31(6): 1003-1025.