A life in balance: Co-constructing Sarah’s early adjustment to Alzheimer’s disease through a series of visual representations of a see-saw

A life in balance

Co-constructing Sarah’s early adjustment to Alzheimer’s disease through a series of visual representations of a see-saw

John Hughes-Roberts, Sion Williams and John Keady

Introduction

The availability and timeliness of a diagnosis of dementia is a policy and practice imperative, although what is less well understood is the transition of a person without dementia to a person living with dementia and the personal adjustments that are necessaiy from this moment in time. Based on a published research article (Keady et a!., 2007), this chapter outlines the journey made by Sarah and the personal theory that was produced as part of the participatory case study work. The work was undertaken by the academic co-researcher (John H-R) and his specialist role in a memory clinic in North Wales and formed the first study in the range of participatory case studies outlined in this book. The chapter will develop the narrative account of Sarah acting as the participant co-researcher and her shared stoiyboard which enabled a seiies of ‘see-saw’ diagrams to be drawn to represent her lived experience. The chapter will conclude with a consideration of the role of the practitioner-researcher in undertaking participatory case study work.

Background

Dementia is often positioned as one of the greatest challenges facing the modem world (Alzheimer’s Disease International, 2015). This is because the numbers of people living with dementia are rising exponentially and, despite the best of intentions, global declarations and major financial investments, the hope of finding a biomedical cure for (any) of the dementias still appears distant. Demographically, the numbers of people living with the condition worldwide are set to rise from the current 46 million to 131.5 million by 2050 (Alzheimer’s Disease International, 2015). In the United Kingdom (UK), the Alzheimer’s Society (2014) has estimated that around 850,000 people are living with dementia with numbers set to rise to over one million by 2025 and to two million by 2051. In Wales, dementia is viewed as a major public health issue with current estimates suggesting that 43,000 people live with dementia across the country and in North Wales, where all the authors have a home, this equates to around 25,700 people living with the condition (Welsh Government, 2018). Whilst such numbers are of interest, it is perhaps more important to recognise that behind each number is a person, a family, a social network, a neighbourhood and a human story.

One response to such a societal challenge has been for governments from around the world to develop national dementia strategies. In the UK, this has manifested as the Prime Minister’s ‘Challenge on Dementia 2020’ (Department of Health 2012, 2015), in Wales as the ‘Dementia Action Plan for Wales’ (Welsh Government, 2018) and in Scotland as ‘Scotland’s National Dementia Strategy’ (Scottish Government, 2017). Whilst there are subtle differences in each of these strategy documents, all agree that improvements in several areas of dementia practice are uniformly necessaiy, namely: increasing diagnostic rates; a greater emphasis on identifying dementia earlier by improved awareness; early diagnosis and interventions; and better research to enable this to happen (see also: Alzheimer’s Disease International, 2011). The theory behind these ambitions rests on the assumption that identifying and treating dementia early, whilst the person still retains a measure of personal awareness and capacity, allows for three main benefits. First, the person living with dementia retains control over their future plans and day-to-day decision-making. Second, there is an opportunity to ‘slow down’ (not reverse) the disease progression through pharmacological (where available) and psychosocial/public health interventions. Third, the person living with dementia is able to continue to engage in their everyday social life, thus maintaining independence, quality of life and a sense of well-being that eases the transition from a pre- to a post-diagnostic state. Moreover, the British Psychological Society (2014) has also argued that such actions will also delay a need for care home placement and hospital admission. Early detection and diagnosis, therefore, have a measurable cost-saving benefit to society as well as a cost-benefit to the person living with dementia him or herself.

The availability and timeliness of a diagnosis of dementia, therefore, becomes an important matter in sendee development and delivery for people living with (at the time) undiagnosed dementia and it is at this interface where memory clinics play a pivotal role. On the one hand, making a diagnosis of dementia is viewed as a complex process and good practice dictates that memory clinics should provide a range of sendees that include the following: pre-diagnostic counselling; cognitive and neuropsychological assessment (with consent); sensitive sharing of a diagnosis; post-diagnostic support; and psychosocial interventions (Bidtish Psychological Society, 2014). On the other hand, whilst the making of a diagnosis is an important issue in the ‘management’ of a person living with dementia and their social networks, it is by no means the end of the stoiy. The making and sharing of a diagnosis of dementia is only the start of another far more challenging series of adjustments and decision-making processes for the person who is undergoing the transition from a person without dementia to a person living with dementia. It is at this transitional interface where this chapter is located and it is focused on the journey that Sarah (not her real name) made following her diagnosis of Alzheimer’s disease at a memory clinic in North Wales. It is also the story of the main chapter author, Jolm H-R, who was both the memory clinic mental health nurse responsible for Sarah as well the academic co-researcher and practitioner-researcher undertaking the research act itself (see Reed and Procter, 1995).

Study design

Sarah’s journey formed part of a larger MPhil study that was conducted, part- time, by John H-R. At this time, the co-authors on this chapter, Jolm К and Sion, acted as John H-R’s research degree supervisors. Jolm H-R was in frill-time clinical practice in North Wales as a specialist memory clinic mental health nurse when this study started in early 2003 and Jolm К and Sion were both based at the School of Nursing at Bangor University in North Wales (see the Introduction to the book) where the MPhil degree was also registered (see Huglies-Roberts, 2008). Jolm H-R’s employers also gave him one day a week over the duration of his higher degree registration to work on the participatory case study.

In order to more folly understand the subjective experience of this post-diagnostic transition, Jolm H-R’s work utilised a participatory case study design and aimed to co-construct how people living with an early diagnosis of dementia understood and came to terms with their diagnosis, with personal adjustments being tracked over time. To achieve this research aim, the MPhil study utilised a narrative approach within a longitudinal, participatory case study design which accessed elements of life story work to inform the data collection process using the framework developed by Gubriitrn (1993). In addition, given John H-R’s working practice in the NHS, the study design also utilised a ‘practitioner-research’ approach (Reed and Procter, 1995) as reflexivity was important to acknowledge in the everyday ethics of conducting the study. For example, fieldwork and data collection were integrated into John H-R’s regular home visits and this placed a demand on Jolm H-R to operate as both an ‘insider’ and an ‘outsider’ throughout the duration of the part-time study and data collection. The closeness of the relationship also enabled all study participants - including Sarah - to have then- personal experiences and creative outputs ‘cast in their terms’ and their relational meanings and understandings tested over time (Channaz, 2000).

Commencing in November 2003, six people with an early diagnosis of dementia (and five of their family members) were recruited into the MPhil study; one of the study participants lived alone. In line with the study protocol, participants in the MPhil study were those who had received an early diagnosis of dementia through a memory clinic in North Wales and agreed to a home visit by John H-R. Recruitment into the study was invited at the ‘monitoring phase’ of the memory clinic’s operational activities; in other words, at the three-month follow-up visit for those people living with dementia that the responsible medical officer assessed as being ‘well adjusted’ to the diagnosis and able to give informed consent to take part or not. As this study took place before the development of the Mental Capacity Act (Department of Health, 2005), the veracity of informed consent was further assessed at this point in time through a clinical judgement that explored the person living with dementia’s: awareness of the procedure they had been through;

adjustment and level of acceptance of their memory loss; level of competence and ability to give informed consent to a procedure; and retained verbal fluency and level of concentration.

The contact with the five families and one person with dementia living alone was through a minimum contact of one visit per month by Jolin H-R, with the biographical data (later tenned a life stoiy script) gathered through a series of ‘chaptered’ life story interviews (Gubrium, 1993). Each interview was tape-recorded (onto C90 cassettes, as was the medium at the time) and transcribed by John H-R and subsequently returned to the person living with dementia for agreement over accuracy. Only then was the life story interview assimilated into a life stoiy script for the participant living with dementia. Interviews to develop the life stoiy script ranged fi'om between one and two hours, with an average visit of one hour 30 minutes. For the data set as a whole, John H-R conducted 85 practitioner-research contacts, 45 of which were classified as research contacts, whilst the remainder were as a clinician which meant that Jolin H-R did not collect research data.

A method of process consent (Dewing, 2002) was adopted at each clinical/ research contact to ensure the person living with dementia’s willingness to participate and understanding of the aims of the MPhil study. John H-R also kept detailed personal memos during each encounter and received regular supervision on both his clinical contact and ongoing data analysis by John К and Sion. Permission to conduct the research study was provided by the appropriate local NHS research ethics committee in North Wales.

The remainder of this chapter will focus on one participant, Sarah, who stepped forward from an early diagnosis of Alzheimer’s disease into her future. However, before this is developed, it is important to say that Sarah’s story has previously been shared in a peer-reviewed publication in ‘Dementia: The International Journal of Social Research and Practice’ (see Keady et al., 2007) and the case study and diagrams used in that article are reproduced in this chapter with the full permission of the publisher.

Case study About Sarah

At the point of first contact in 2003, Sarah was a 70-year-old woman who lived alone, supported by her friend Laura and after that relationship came to an end during the length of the research contacts had no immediate care partner. Sarah was diagnosed with Alzheimer’s disease. In all, there were 17 research contacts, and each took place at home in Sarah’s bungalow. The first seven visits were with Sarah and Laura and then all subsequent research visits were with Sarah alone. The production of Sarah’s complete life stoiy script using Gubrium’s (1993) chaptered life stor}' approach took approximately 12 contacts, and, on average, there was one research contact per month. All interviews/encounters were tape- recorded and transcribed in time for the next visit. Sarah was provided with an

‘ideas book’ which she was encouraged to use in between visits. John H-R wrote down key thoughts and experiences after each visit which formed part of the data used in analysis - this will be referred to during the compilation and development of this chapter as it was co-researched and co-constmcted. The first two visits produced a rough draft of Sarah’s life story sciipt and it was clear from these early encounters that Sarah immediately grasped the task of chaptering her life. At the end of the first four weeks, and as seen below, Sarah had compiled the following chronological list of chapter titles that were used to ‘flesh out’ her life story' script (all chapter titles are obviously in Sarah’s own words):

  • • An Introduction to My Life
  • • Chapter 1: Childhood
  • • Chapter 2: Teenage Years
  • • Chapter 3: Working Life
  • • Chapter 4: Married Life
  • • Chapter 5: Life After the Death of My Husband
  • • Chapter 6: Joan and the Fellowship
  • • Chapter 7: My Life Now

Using Sarah’s words gathered at interview, we will now go on to provide extracts from each of her chapters, including the Introduction, to help the reader get a handle on what Sarah’s life story script actually looked like. At the end of the research contacts, Sarah’s life stoiy script was left with Sarah.

Sarah: My life story script An introduction to my life

The most important turning points in my life? Well, there’s been quite a few! When I left nursing, and joined the blood bank, I said ‘If this job incurs any responsibility I can’t do it! ’ Anyway, they took me on and they called me the ‘leader of the bleeders’. I had a great time in that job. Getting married was a turning point for me; I had to leave that job to get married - a lot of resentment there. This is when I became self-destructive because I couldn’t stand up to him [her husband]. He used to shout ‘Don’t you dare cry!’ So I just went into a shell. He didn’t let me go anywhere and he would be standing at the door waiting for me.

After he died I started going to the chinch and other activities and I thought I was stalling to come to terms with my past: ‘Come on now, why are you working yourself up? Resentment is bad for the soul’. There’s no point being resentfiil, just try and see what good it’s doing you. I became very' defensive.

The happiest points in my life were working in the blood bank [clarifying note: earlier reference to ‘leader of the bleeders’]. And I also worked for a time as a nursery nurse. I loved working with children. The birth of my children was also an important time for me.

The saddest point in my life? Well, I couldn’t understand what was wrong with my dad. He didn’t have a diagnosis as we do today. He was a lovely man, then he stalled doing weird things, he had a mini-stroke and I thought it must be that, and then it was getting worse and worse until I used to have to write things on the calendar for him. He went out buying clocks every day - they were all over the house. In the end, we had to go to the shop to tell them to stop selling clocks to him. The tests in those days were a bit dated; for example, the doctor asked him ‘Who’s the Prime Minister?’ He was doing pretty well, and the doctor asked him again: ‘Who’s the Prime Minister?’ After a few minutes he answered: ‘That bloody bitch!’ The doctor said: ‘Could I assume it’s Margaret Thatcher? Is that your answer?’ And then they decided he had to go into a nursing home. They weren’t very good at looking after him. They used to say to me: ‘Do you know what your father’s been doing? He’s been getting into bed with other old ladies’. ‘Well’, I said, ‘Is there anyone on duty at night?’ I said ‘He may be lonely and he’s looking for his wife and wanted a cuddle!’ So I had learnt to laugh at this point. However, this was the saddest point in my life.

The most important people in my life have been my sons and my aunts who I used to go and stay with in my school holidays. And I would have to say my husband ... he had had a bad background as a child. I have no resentments against him anymore. I just feel sorry for him. We had this rose in the garden, and what was happening was, we had a dog, and ever}' morning after my husband went to work, the dog went into the garden and pulled up the rose! My neighbour would then replant the rose and water it. When my husband returned my neighbour would warn me ‘The master is coming’. And my husband used to say: T don’t know why this rose isn’t growing’. So you see, I was a very conniving woman!

My friend Lam a and my dog are closest to me now. If I could live my life again I don’t think I would change anything. But I would of stood up to my husband more.

How would I explain what’s happened to me in my life? I think I missed companionship of younger people [when I was young] and this affected my confidence. I was always happiest in the company of older people.

Chapter 1: Childhood

I was an only child; they brought me up in the old-fashioned way when children were seen and not heard! If you wanted to leave the table you had to get permission, so that is the way I was brought up. I spent a large part of my childhood in Liverpool. I was bom in my Aunt’s nursing home, where I helped out taking meals up to the patients. It was a maternity home. I would watch the babies being bom and helping ... as I thought at the time. Looking back, I was probably a flipping nuisance! I had a lot of friends there, people who had been bom in the nursing home and were about my age.

For a short time I went to a convent. I was frightened to death of the nuns. My mother was moving house so I was there for quite a while and then she wasn’t well. I was quite happy in the nursing home but terrified of school. I was very unhappy there, I shouldn’t say unhappy, I was uncomfortable. I didn’t fit in because I was a different religion - they were Catholic and I was, if anything, Church of England. I just didn’t fit in.

I was overweight in those days. I got a lot of teasing. That put a lot of determination into me and I made the netball team in junior school and the rounders team. But PE [physical education] no, I couldn’t do that. Then I moved on to a grammar school. I liked it there; I got on okay there.

Chapter 2: Teenage years

In my teenage years I found it extremely difficult to mix with other children because I was an only child. I could mix with adults. I was the favourite of the head teacher, and he used to ring the bell if he wanted me. I thought this was wonderful. It was a miracle to me that he always wanted me in the middle of a math’s lesson! I could never do those daimi tables!

I spent most of my time at home, apart from the Girl Guides. I wasn’t allowed out very far. And it wasn’t until my teens that I was allowed to go out any distance with friends. I spent an awful lot of time behind the settee, listening. They would say: ‘Go and be quiet over there while we’re talking’, so I would go behind the settee and sit there. I would sit and read a book with a torch.

My mum was a person that went out if anyone was ill in the area. She went out and looked after them. I always wanted my mum to have a baby. ‘Why won’t you have a baby?’ I would say. ‘I’ve got enough with you’, she would reply. I had a good childhood, but quite lonely, but that was down to me. I liked it that way.

I passed a scholarship for a grammar school, which had just been changed from a private school, which was quite difficult as there were people still paying for their education. They didn’t talk to us as they were very upper class! So it was quite difficult, but I did have some friends, so there was someone to talk to. And then I got my ‘O’ levels. I did very well.

Chapter 3: Working life

My first job was as a nurse. I started as a nursery nurse. I was too young to go into nursing so I was advised to become a nursery nurse to gain experience and get a qualification. I started my nursery nurse training, part of which was residential. I was fortunate to get on that course because they could only take so many in a year. And I enjoyed it. I enjoyed looking after the babies and children. I was looking after four or five babies at a time. I then went on to the Manchester Royal Infirmaiy. I passed the entrance exam and started at the Manchester Royal Infirmary and I enjoyed it. But I found it increasingly difficult towards the end. I was on the ward where they were doing brain operations, it was neurosurgery, and that dragged me down. I did six months on nights in charge, which brought me near to a breakdown. When I finished there, I went to work on a ward where they had leukaemia patients. It was a children’s ward and I couldn’t cope with that and I finished [clarifying note: withdrew from nurse training] just a few weeks before my final exams. And from there, I went to what they called the ‘nurse’s graveyard’. I went to the Blood Bank! It was called the nurse’s graveyard because there were so many nurses working there who had not finished their training.

You had to have gone so far in your training or they wouldn’t have taken you. But I had a wonderful time there. I loved it! We were out every day meeting different people. Lots of pals, brilliant! I enjoyed that job.

Chapter 4: Married life

I married when I was about 29; I had several boyfriends before. We went out for 12 months, there were no signs of any problems between us; it went very well. He did his National Sendee and then we got married, and it didn’t last, the marriage lasted but nothing else! I had two children eventually. It wasn’t a very good marriage: ‘How dare you do this, How dare you do that’ He had a violent, explosive temper. Great long sulks. This was the way he was. I didn’t expect him to be like that, there had been no signs of that before we married.

Chapter 5: Life after the death of my husband

After his death they called me the merry widow because I was going out all the time! I was only going to chinch, but they didn’t know that! That was a good outlet for me. There were two things I did after my husband died. First, I gained confidence by going to the Fellowship [clarifying note: a group for women who were ‘survivors of bad marriages’], which I certainly didn’t have before. I started to change. I had been the heart and soul of the party who cried inside constantly. Now, I am beginning to believe in myself and leam to love myself. Second, I went to the ‘no smoking’ clinic. I was supposed to go for between four to six weeks, but I was still there 12 months later! But during that time the doctor said to me ‘I’ve got this boy coming in, he’s 14 and badly hooked on the tobacco’ and he said ‘Would you do the group tonight?’ I was shocked. He said ‘There’s nothing to it, all you do is sit there and prompt them’. So I did and stayed for the 12 months and it took me that time to stop smoking.

Chapter 6: Megan and the Fellowship

I then came to live in North Wales and I started in the Fellowship. I met my friend Megan and we developed the Fellowship together. I was enjoying life again. I stopped smoking because I was a heavy smoker, hence the cough. That was the biggest thing I did along with joining the Fellowship. The Fellowship was also called ‘Recoverers Anonymous’ and we met once a week. I worked for the Fellowship for a long time and took part in arranging workshops. It was to help people who were basically ‘destructive’. I was self-destructive - alcohol. I don’t drink now. I drank dining my marriage due to the constant pressures I was under. I don’t drink now. I carried on with the workshops. I wrote and became interested in spiritualism.

I started to write some beautiful spiritual messages. And then Megan died ... that was a bad year. She had had a brain tumour. I remember saying ‘What am I going to do now?’ Then I had a lifesaver. Megan couldn’t have dogs, because she was asthmatic, and I got this little creatine who had been ill-treated and she was terrified when she fir st came, terrified of men, she still is to a degree. And she’s been my saviour.

It was quite hard when Megan died but I met Laura, she took me out and we went all over the place. We tried to keep the Fellowship going but there wasn’t the interest so it finished.

Chapter 7: Current life with Laura

I first noticed it when I was adding up my money and I thought ‘This isn’t right, this isn’t normal?’ I was never a mathematician, but I could add up. I was making mistakes all the time. I have got a sense of humour and I know that rather than sit and cry over it, you might as well laugh at it and look to the funny side of it and that’s what I try to do. It was a difficult time for me - with a sense of losing control - as it was begimiing to affect my day-to-day living. I was slowing down, losing my train of thought and I couldn’t do things as well as I used to. I was increasingly becoming overwhelmed by things. I couldn’t understand what was happening to me and why I was unable to do things I’d always been able to in the past.

I was diagnosed with Alzheimer’s disease in September 2002. It was important to me that I was told the diagnosis. I had an idea anyway because my father had had dementia. I’ve had tremendous support from Laura and my sons, so I’m not alone.

My only concern was how I was told I had Alzheimer’s disease. I’m glad that you people [John H-R and the memory clinic staff] did give me the diagnosis because I’m coping. I’m not worrying about it because I know I’ve got all you people to ask questions to if I need that. I can also fall back on you all if I needed to. My only criticism, if you like, was the number of people in the room when they told me what was wrong [clarifying note: shared the diagnosis]. It would have been better if just one or two people I knew well had told me what I had.

Although I live alone I’m not alone. And I just love my life at the moment. I go to the day centre and I love it there. And I got on well with the older people there. Because I like older people, I always have done, they fascinate me. I know my illness will progress so I do everything now. I live life to the foil. I try not to look too far ahead. I tell people I have Alzheimer’s disease, if appropriate. It’s nothing to be ashamed of and we all know where we stand. I tend to make a joke of it or it would get to me. I understand that if I make mistakes it’s normal. Other people will need to accept me for what I am. I can still do things, even new things. I’ve recently got a bus pass and I go to Llandudno [sea-side town in North Wales] every week. Getting on the bus is like a club; it’s a social event for me. It keeps my independence. I meet other people and have a chat. I was never a person to talk and now I can! I’m not afraid anymore. I used to think that people would laugh at me. I’m really enjoying life at the moment and having Alzheimer’s disease hasn’t stopped this. As for the future, I recently met with my social worker to discuss nursing homes so I know I will get help when I reach the stage when I need more help.

Making a storyboard together

Once Sarah had completed her life story script, John H-R and Sarah discussed the chapter headings as a basis for developing on over-arching account of what was at the heart of her ‘storyline’. Throughout the earlier chapters hi her life stoiy script, Sarah described an unhappy early and adult life, noticeably with relationships such as her marriage. However, becoming a mother brought with it a degree of happiness and stability and some essence of control: ‘Happy days with the children’, as Sarah put it. The storyboard that John H-R and Sarah constructed together is illustrated in Table 6.1 and highlights the centre stage storylines (what is centre stage in my life) and their supporting properties (how is it centre stage in my life). Looking together at the stoiyboard, Sarah identified that losing, gaining and then keeping balance had been ‘centre stage’ in her life and not just now, but also ‘in her past’, especially in the personal sacrifices that she had made to hold her marriage together.

The issue of life ‘balancing’ was contextualised within this journeyed storyline and lay at the heart of her writings in the final chapter of her life stoiy script. With the onset of Alzheimer’s disease, this chain of losing, finding and keeping balance was evident in the way that Sarah had both come to terms with and coped with her diagnosis. It soon became apparent that living with Alzheimer’s disease was not the most stressful and insurmountable issue in Sarah’s life - her unhappy marriage and subsequent alcohol dependency accounted for that unwelcome position.

Table 6.1 Sarah’s Storyboard

(What) Lonely journey

(What) Making mistakes

(How)

(How)

Only and lonely child

It isn’t normal

Respite: leader of the bleeders

Embarrassment

Marriage and addiction

It doesn’t add up

Worm that turned

‘Where do 1 go?’

Merry widow

Merry widow

(What) Journey of Survival

(What) Walking a pathway

(How)

(How)

Recovery, Anonymous and Fellowship

Journeying

‘Beautiful spiritual messages'

Worm that turned too late

Laura and the dog

Contentment and life

Dad and the ‘saddest day’

People that matter

Sarah’s early awareness of (undiagnosed) Alzheimer’s disease was expressed through ‘making mistakes’ and an inability to count her money or add up correctly. Indeed, Sarah constructed her Alzheimer’s disease through a ‘making mistakes’ cycle and this caused her a great deal of frustration and anxiety. Undoubtedly, it was, and remained for the length of the encounter, a frightening experience and one Sarah elaborated upon in the final chapter of her life story script when she described herself as ‘changing as a person’ and exhibited a fear of losing control.

In working together to comiect the storylines, Sarah and Joint H-R plotted and diagrammed this experience as a ‘see-saw’, one where movement - and momentum - was constantly changing and stability went ‘up and down’. From Sarah’s initial sketches and drawings, three diagrams were eventually constructed that both Sarah and John H-R agreed represented her life and her personal theory. As can be seen in Figure 6.1, Sarah initially felt her life was ‘out of balance’ and that the see-saw was tilted too far from the middle-line - a position that both metaphorically and symbolically represented stability and an ideal state of well-being. The see-saw was, therefore, pushed upwards to a distorted level by the uncertainty, and fear, that surrounded her life at the time of symptom onset. This was a time that Sarah captured in the words of ‘making mistakes’.

As Figure 6.2 reveals, what began to recover a sense of balance in Sarah’s life was the diagnosis of Alzheimer’s disease.

The diagnosis provided for Sarah a reason why her control, and balance, was being lost and also explained her ‘mistake making’. As shared in the extracts from the life story sciipt and the storyboard (see Table 6.1), Sarah’s father had also lived with dementia and it was from this biographical connection that she was able to associate (and apply) some of her own early signs and symptoms to the experiences she saw in her father. Indeed, it was this association that prompted Sarah to discuss her concerns with her general practitioner and ask for a formal assessment of her memory'. The diagnosis was also important as it enabled Sarah

Losing balance

Figure 6.1 Losing balance.

Finding balance

Figure 6.2 Finding balance.

to access support sendees, such as the memory clinic (where she first met John H-R) and the local day centre. Sarah described how both have proved crucial in helping her adapt and cope with her memory problems.

Figure 6.3 describes Sarah’s current life (as of December 2005). Driven by her previous journey of survival in her marriage, Sarah was determined to ‘live each day as it comes’, to ‘fight her illness’ and to ‘get through it’.

As Figur e 6.3 reveals, this equilibrium is represented by the see-saw having a sense of balance and evenness. To maintain this balance, for Sarah, it was important to receive, access and accept help and to have available to her all the ‘struts’ that underpin the ‘keeping balance’ side of the see-saw. Moreover, as the ‘see-saw’ in Figure 6.3 suggests, whilst Sarah continued to ‘make mistakes’, she was able to place this part of her life in context and accept that this was ‘not her fault’. Consequently, Sarah leamt to live and cope with her memory' problems, keeping die (symbolic) symmetry in the see-saw close to her heart and a representation of her life: a hfe in balance.

Unfortunately, a few years later, changes to Sarah’s cognitive capacity tilted the see-saw upwards once again, shifting the middle-line and making control a more challenging enterprise. The see-saw was never stable for long.

Insights gained

The co-produced development of the three see-saw diagrams provided John H-R with a greater understanding of the experiences of people living with early

Keeping balance

Figure 6.3 Keeping balance.

Alzheimer’s disease and its intersection with Sarah’s sense of self. The diagrams also provided new clinical and personal insights into the complex biographical experiences - and responses - to the onset, diagnosis and adjustment to the trajectory of Alzheimer’s disease.

Acting as the academic co-researcher and practitioner-researcher, John H-R felt the participatory case study approach provided an accessible and meaningful method of conducting qualitative research inquiry that enabled Sarah, as a person with early Alzheimer’s disease, to be frilly engaged with the research process and have a sense of control over its direction and outcome. The actions and creativity underpinning the approach helped explain potentially difficult concepts in a simplified, effective and meaningful way and in a way that was drawn from Sarah’s personal knowledge and experience, rather than simply relying on an objective clinical assessment. The blending of these knowledge bases took time but was ultimately a rewarding and clarifying experience, not only for Sarah as shared in this case example, but also for John H-R as the academic co-researcher and practitioner-researcher.

For John H-R, the encounters also brought about a new understanding of the narrative language that people living with Alzheimer’s disease brought to practice understanding. For example, Sarah, along with other participants in the wider study, did not put the word ‘dementia’, or their specific diagnostic label, in the presentation of their life stoiy script. Another narrative language was employed for this purpose. For Sarah, it was ‘making mistakes’ as this was her experience of how dententia/Alzheimer’s disease impacted and intersected with her everyday life ... and was mainly powerless to stop. Coping and adapting to mistake making provided a new way of seeing how clinical interventions could support this mindset and belief structure - with balancing the see-saw (as seen in Figure 6.3), the outcome of a successful helping intervention or otherwise.

An additional strength of the participatory case study design was the use of life story work. John H-R found that life story proved a powerful and accessible tool for generating a better understanding and insight mto the experience of people living with early Alzheimer’s disease. By also sharing his life stoiy with Sarah at the start of each encounter, John H-R reported that this exchange promoted a closer working relationship with Sarah, demystified the power of the ‘researcher’ and promoted a level of trust that made future co-production a much easier and more enjoyable process. It became ‘person to person’ rather than ‘researcher to participant’, as is the aspiration of participatory case study work.

Ethical issues

Conducting participatory case study work involved the participation of potentially vulnerable people as co-researchers, and therefore, placed an obligation on John H-R as the academic co-researcher and practitioner-researcher to articulate, and justify, sound ethical procedures (Tee and Lathleen, 2004). Central to any study that involves the active participation of people with an early diagnosis of dementia is the ascertainment of the person’s informed consent to participate and their understanding of the research aims and objectives. The longitudinal nature of the participatory case study design also meant that the process of consent was not a single event but a continual, ongoing process between the researcher and participant (Kayser-Jones and Koenig, 1994). This is particularly evident with people who may require continual reminders about what it is they had consented to. In addition, this study took place before the Mental Capacity Act legislation in the UK (Department of Health, 2005). Therefore, safeguards had to be in place in the research protocol to ensure that people with an early diagnosis of dementia knew what was happening at all times, and why, and that withdrawal from taking part was always an option. The study, therefore, adopted a model of ‘process consent’ (Dewing, 2002) at the point of each encounter - a position also seen in other chapters in this book.

Issues of reflexivity

As stated in the previous section, John H-R shared key features of his own personal narrative with Sarah as part of a reflexive account to open up his own sense of self and identity. This act re-distributed the power balance and helped allow Sarah to get to know John H-R as a person and at the end of their time together, arguably, as a friend. As previously detailed in Sarah’s life story' script, John H-R’s shared personal narrative was also based on the life story framework described by

Gubrium (1993) that he subsequently used with people living with dementia as the first part of the interview process. Here, people living with dementia as participant co-researchers in the study interviewed John H-R about his life and this resulted in four key life chapters that emerged for Joint H-R, namely, his childhood, working life, personal life and present day. Sharing life stories at the onset of the study also acted to blur the socially constructed roles between clinician and ‘patient’ and opened up the potential for clinical outcomes to emerge from the data that was built on lived experience.

Discussion

The generation and co-production with Sarah of the three see-saw diagrams, as shared in this chapter, changed memory clinic practice in the environment where John H-R worked and had influence in the development of two new memory clinic services in Noilh Wales. This was an unexpected benefit of the participatory case study design and underscored the importance of a practitioner-research approach to making change and creating a legacy for the work that had been conducted (Reed and Procter, 1995). To further develop this statement, the seesaw diagrams and the use of life story work to capture ‘meaning making’ and ‘mental construction' of events and experience was found to be an accessible and effective way of working alongside all people living with dementia and their families referred to the memory clinic and provided a sense of shared enteiprise and discovery in the life journey. Consequently, an opportunity to engage people with a new and early diagnosis of dementia (and their families, as appropriate) in the documentation of their life stoiy has provided valuable insights into their experience of services and their expectations. Specifically, memory clinic services in North Wales now:

  • • Offer a pre-screening multidisciplinary home assessment wherever possible
  • • Obtain informed consent from the person with memory loss and their family to participate in, and proceed with, the assessment process
  • • Cany out an initial holistic assessment of the person and their family within the context of their home environment and their significant relationship
  • • Assess and offer prompt intervention with safety and risk factors, e.g. gas and fire safety, non-compliance with medication, mobility issues and carer stress
  • • Establish a therapeutic alliance (relationship) in the person’s own ‘territory’, where they are more relaxed and less threatened. This makes subsequent visits to the memory clinic less daunting, especially when there is a familiar face present
  • • Cany out assessments in the home to introduce the concept of ‘testing’ in a less formal way and reduce perfonnance anxiety
  • • Assess the approach and timing that will be individually required in each situation, i.e. sharing the diagnosis. Control of the sharing of the diagnosis is given to the client/family, where appropriate, they can choose who shares the diagnosis with them, i.e. doctor, nurse, occupational therapist. The person can also choose the location of this procedure, i.e. their own home
  • • Facilitate an understanding that the memory clinic involves a fiill psychosocial sendee, as well as offering medication
  • • Joint assessments: can provide staff with increased professional confidence and reassurance, resulting from ‘shared wisdom’ and ‘shared memory’
  • • Less reliance on the use of objective measures of ‘assessment testing’

The sharing and documentation of a life stoiy also provide a living document of choice, experience and history for when, a little further along the road, people living with dementia may have more difficulty in communicating their needs and wants through language alone. The use of life story work will also prove a useful and meaningful clinical and therapeutic tool and will involve both clinician and patient in developing a shared understanding of lived experience.

Over and above sendee development and operational change, the chapter shared an intensely personal stoiy of Sarah and the emotional abuse that she experienced, and survived, in her marriage. For Sarah, this episode of her life was a more traumatic experience than that of her diagnosis of Alzheimer’s disease as recounted in the shared slices of the life stoiy script. Moreover, the title of Sarah’s final chapter in her life story script (chapter 7: Current life with Laura) is also important to reflect upon as what Sarah is actually saying is that she found personal fiilfilment in a same-sex relationship with Lama and could, at last, be the person that she had always wanted to be. As such, in the later years of her life, this relationship connected Sarah’s sexuality to her long-held personal and social identity. Whilst in the UK at least, the view of society to same-sex relationships is now one of equality and tolerance, for those older people alive today who are homosexual or bisexual, these protected rights and accommodating attitudes were not always present during the person’s life course. It also should not be lost that Sarah found this intense human fiilfilment whilst living with Alzheimer’s disease. Consequently, Sarah’s life experience helps to inform the debate on gender and sexuality that is only just beginning to emerge in the dementia studies literature (Bartlett el al., 2018). In many ways, Sarah’s relationship with Latua, and how it was found, acts as a counter-narrative to the negative attitudes and stigma that too often surrounds a diagnosis and an ongoing life with dementia (Sterin, 2002; Kim et al. 2019). For Sarah, as for all people, that is a narrative boundary that needs to be demolished.

Conclusion

The participatory case study has demonstrated the importance of actively involving people living with dementia in the research process and how research findings can inform and transform practice. The primary aim of utilising a participator)' case study approach and its use of creative self-expression to provide a way in to involve the person living with dementia and their families helped to create a space for mutual knowledge to be exchanged and shared. Increasingly, the voice of people living with dementia is influencing political and social/liealthcare systems and the findings of this study add to the ongoing debate on early intervention in dementia care, only this time led by the creativity and expression of those that live with the condition. It is a knowledge base that should not be overlooked if, going forward, genuine partnerships are to emerge and be the foundation for authentic collaborative working.

Key learning points from the method used

  • • The use of diagramming has proved a meaningful and accessible way of expressing and understanding the complexities of chronic illness than narrative alone.
  • • The use of life story work has proved a powerfi.il and accessible tool for generating a better understanding and insight into the experience of people living with early Alzheimer’s disease.
  • • Utilising the sharing and exchange of life stories promoted a closer, ‘richer’ research relationship and level of trust, ensuring that the development of individual life stories was an ‘enjoyable’ partnership and not a mutually exclusive event.

Three key references

Chaimaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In Denzin, N.K and Lincoln, Y.S. (eds.), Handbook of qualitative research, Second edition (pp. 509-535). Thousand Oaks, CA: Sage.

Dewing, J. (2002). From ritual to relationship: A person-centred approach to consent in qualitative research with older people who have dementia. Dementia: The International Journal of Social Research and Practice, 1(2): 157-171.

Reed, J. and Procter, S. (1995). Practitioner research in context. In Reed, J. and Procter, S. (eds.), Practitioner research in health care: The inside story (pp. 3-31). London: Chapman and Hall.

A recommended future reading list

Keady, J., Williams, S., Hughes-Robeits, J, Quitm, P. and Quinn, M. (2007). ‘A Changing Life’: Using co-constmcted inquiry to develop a personal theoiy of early awareness and adjustment to the onset of Alzheimer’s disease. In Nolan, M., Hanson, E., Giant, G. and Keady, J. (eds.), User participation research in health and social care: Voices, values and evaluation (pp. 69-88). Maidenhead: Open University Press/McGraw Hill.

Reilly, S.T., Harding, A.J.E., Morbey, H., Ahmed, F., Williamson, P.R., Swarbrick, C., Leroi, I., Davies, L., Reeves, D., Holland, F., Harm, M. and Keady, J. (2020). What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-phannacological community-based health and social care interventions. Age and Ageing, 1-8. doi:10.1093/ageing/afaa

Sterin, G. (2002). Essay on a word: A lived experience of Alzheimer’s disease. Dementia: The International Journal of Social Research and Practice, 1(1): 7-10.

Acknowledgements

With thanks to Sage Publications for permission to replicate text and figures from the original publication:

Keady, J., Williams, S. and Hughes-Roberts, J. (2007). ‘Making Mistakes': using Co-Constructed Inquiry to illuminate meaning and relationships in the early adjustment to Alzheimer’s disease - a single case study approach. Dementia: The International Journal of Social Research and Practice, 6(3): 343-364.

References

Alzheimer’s Disease International (2011). World Alzheimer’s report: The benefits of early diagnosis and inteivention. London: Alzheimer’s Disease International.

Alzheimer’s Disease International (2015). World Alzheimer's report - the global impact of dementia: An analysis of prevalence, incidence, costs and trends. London: Alzheimer’s Disease International.

Alzheimer's Society (2014). Dementia UK: Update. London: Alzheimer's Society.

Bartlett, R., Gjemes, T., Lotherington, A.-T. and Obstefelder, A. (2018). Gender, citizenship and dementia care: A scoping review of studies to inform policy and future research. Health and Social Care in the Community, 26(1): 14-26.

British Psychological Society (2014). Clinical psychology in early stage dementia care pathway. London: British Psychological Society.

Chaimaz, K. (2000). Grounded theoiy: Objectivist and constructivist methods. In Denzin, N.K and Lincoln, Y.S. (eds.), Handbook of qualitative research, Second edition (pp. 509-535). Thousand Oaks, CA: Sage.

Dewing, J. (2002). From ritual to relationship: A person-centred approach to consent in qualitative research with older people who have dementia. Dementia: The International Journal of Social Research and Practice, 1(2): 157-171.

Department of Health (2005). Mental capacity act. London: Department of Health. Department of Health (2012). Prime Minister's challenge on dementia: Delivering major improvements in dementia care and research by 2015. London: Department of Health. Department of Health (2015). Prime Minister’s challenge on dementia 2020. London: Department of Health.

Gubrium, J.R. (1993). Speaking of life: Horizons of meaning for nursing home residents. Newbiuy Park, CA: Sage.

Hughes-Roberts, J. (2008). The early experience of Alzheimer’s disease. MPhil thesis. Bangor University, Bangor.

Kayser-Jones, J. and Koenig, B. (1994). Ethical issues’ In Gubrium, J. and Sankar, A.

(eds.), Qualitative Methods in Aging Research (pp. 15-32). London: Sage.

Keady, J., Williams, S. and Hughes-Roberts, J. (2007). ‘Making Mistakes’: Using co-constructed inquiry to illuminate meaning and relationships in the early adjustment to Alzheimer’s disease - a single case study approach. Dementia: The International Journal of Social Research and Practice, 6(3): 343-364.

Kim, S., Werner, P., Richardson, A. and Anstey, K.J. (2019). Dementia stigma reduction (DESeRvE): Study protocol for a randomised contr olled trial of an outline intervention program to reduce dementia-related public stigma. Contemporary Clinical Trials Communications, https://doi.org/10.1016/j .conctc.2019.100351

Reed, J. and Procter, S. (1995). Practitioner research in context. In Reed, J. and Procter, S. (eds.), Practitioner research in health care: The inside stoiy (pp. 3-31). London: Chapman and Hall.

Scottish Government (2017). Scotland’s national dementia strategy> 2017 - 2020. Edinburgh: Scottish Government.

Sterin, G. (2002). Essay on a word: A lived experience of Alzheimer’s disease. Dementia: The International Journal of Social Research and Practice, 1(1): 7-10.

Tee, S. and Lathlean, J. (2004). The ethics of conducting a co-operative study with vulnerable people. Journal of Advanced Nursing, 47: 536-547.

Welsh Government (2018). Dementia action plan for Wales. Cardiff: Welsh Government.

 
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