bold Masters of Research, Blog 2 by Suzie Beresford
Being bold and being brave
This blog is part of a series of three, it is designed to share the research findings undertaken as part of a Master of Research degree (MRes). It will help the readers to explore the effectiveness of arts-based methods to develop social leaders in Dementia.
Welcome to my second blog post, I feel I may have pinched the title for this post from a fellow boldling, so to whoever it was thank you ?. It stuck in my head and given the topic of this blog I feel I am being bold and brave as have found reflecting on some of these memories quite difficult. This time we will discover how my own experiences relate to the impact of bold.
You may wonder how my life experiences have anything to do with bold or research for that matter. So, to give you some context I will explain the methodology behind the research study. I used a methodology called autoethnography, it’s quite a mouthful! In ‘The Oxford Handbook of Qualitive Research’ there is a chapter entitled Practicing the Autoethnography and living the Autoethnographic life. In this chapter Caroline Ellis and Tony Adams help to explain how this form of research works. Autoethnography literally means ‘auto’ = self, ‘etho’= culture: and ‘graphy’ = story.”
One of the ways they describe it is “the stories of a particular life can provide a useful way of knowing about general human experience” (p2 ). They go on to relate how connection can be found in personal narratives and the comparing of our own stories can help to form a clearer understanding, which can help us to negotiate life. So, by sharing my own experiences I hope to make this research relevant to other people. Helping to further understanding, find common ground, gain cultural perspective and enable connection.
So how exactly do you gather data about your own experiences? One of the key concepts of autoethnography is relexify or reflecting on your experiences. One way to capture these reflections was through the practise of reflective journaling. So, to capture data about my own experiences I kept a dated reflective diary. Throughout this blog I will share some of these reflective entries. Below is one of my reflections about the methodology I would use within the study.
“Autoethnographic methods seem to be in line with the bold program, enabling me to connect with myself. To understand ways in which others play their role in sharing each other’s world, acknowledging and contemplating their importance” Reflective diary entry 21/01/23
By collecting the data of my reflections and experiences I was able to show the study was systematic, rigorous, and transparent to readers.
But before I could gather these, I also had the task of deciding what experiences were relevant, so I had to think carefully about what I was reflecting on. So I considered; my background as it shapes the way I see things or to put another way the lens by which I view things, my experience of dementia both on a professional and personal level and finally my experience of bold. This meant I was able to “honour my own voice”(p 202) .
I was able to capture my thoughts and feelings before collecting the bold partners experiences through the group analysis process (this will be discussed further in my concluding blog post). To help inform my reflections on bold I looked at my bold story through the bold community website this helped me recall my bold journey and review what I had created.
“To understand other voices, we have to understand our own. While each voice is important if we don’t apply this to our own voice how then can we believe it? Self-belief allows us to also belief in others as understanding starts within us” (Reflective diary entry 2/06/2023)
Let me now share some of my experiences as we take a look at how they affected my experience of bold.
My experience of dementia
To explain my experience of dementia I will introduce myself again but this time I’ll explain the various roles I have in life. I am Suzie, a mother, a daughter, a worker and I was a granddaughter because in life we are more than just one thing. To give you further context, I’ll explain a little more about how some of these roles and how my cultural background has affected my worldview.
I felt a little apprehensive sharing some of my experiences, in fact I was afraid as I was unsure how to begin. I was worried about how I would come across to you the reader. This fear comes from a place deep inside, a part of me which is afraid of getting it wrong and being punished for not being good enough and feeling that my voice isn’t important. To explain, this stems from a strict fundamentalist religious background where set ‘rules’ and concepts were set. In fact, if these were not followed it could result in consequences or punishment and sometimes even social isolation. However, I have come to believe that facing fears can enable growth and sharing experiences can further our understanding of both ourselves and others.
I didn’t like the way this made me feel, unimportant lowering my self-worth. However, this is a path I no longer follow I have started to understand myself and the importance of finding my voice. After all we all have valid life experience, with different abilities and strengths unique to us these make us who we are. There isn’t just one set way for everyone we don’t see things in the same way and nor should we, as we are all unique. Upon reflection I think this is one of the reasons I connect with arts-based methods. Creative activities aren’t based on getting it right but rather on our imagination or how we see things, there isn’t a wrong way to imagine, you control what you create. That being said it isn’t just my love of the ‘Arts’ but my experience of using it to benefit others.
To give you a bit more background, most of my working life has been spent within social care with the last 18 years or so within the field of dementia. While working for the Dementia Arts trust (DAT, previously known as the Little Art School Trust) I ran scaffolded art classes for those living with dementia and those who offered care and support. This meant I saw firsthand the positive benefits that resulted from taking part in arts-based activities.
These classes were hosted in care homes and different community settings to help people taking part to learn to draw and paint. I had noticed that these classes resulted in smiling faces, enjoyment, storytelling, raised self-esteem and exclamations of accomplishment. In fact, there was a study on some of the effects of these classes and it underlined what I had experienced. It went on to show the positive effects on increased wellbeing and showed the classes were “bright and full of chatter” (p23) in fact these effects were still seen after the sessions had ended. These classes had helped to make people feel socially included.
However, rewinding the clock back to a slightly earlier time in my career I was quite unsure and almost afraid of those living with dementia. This does strike me as strange given that my gran lived with dementia. But to explain, this developed from both a lack of knowledge of what was happening, and a negative view based on the losses I witnessed. I can remember working in a care home as a care assistant and had been asked if I wanted to work within the dementia unit, I said no at that time. My reasoning related to what I saw when I passed the dementia unit doors, I saw people wandering, letting out cry’s and desperately trying to open the coded doors and it upset me. What I didn’t realise then as to why; they were trying to make sense of the world around them, responding to uncertainty and changes they may not have understood. Which both Tom Kitwood and Dr Steven Sabat relate to in the books I previously mentioned. What I did not appreciate at that time is that dementia is about so much more than loss, as I gained further insights through experience my opinion changed.
“…I worked within social care and within one of the nursing homes I saw some of those living with dementia at the lateral stages and it frightened me. It made me feel somewhat powerless.
However, reflecting on this these stages, while they depict part of dementia, they don’t show the full picture, something I have come to realise through the experience of working with people who live with dementia” (Reflective diary excerpt 13/05/23).
Meet my Grandparents.
As I have explained, my experience of dementia was not always related to positive outcomes, it runs deeper and on a more personal level. But, before I go on to explain why this is the case, I will set the scene by returning to an early part of my life. For as long as I can remember childhood linked me to both sets of grandparents, they were a huge part of it, I was lucky to have them well into my late 20’s. One set of grandparents lived right next door and my early memories of them were being able to visit them whenever I wanted as their door was always open. Me and my family would go on holidays with them staying in various campsites, in fact my grandpa taught me to ride a bike while on holiday.
My gran was to me, from a small child’s perspective, serious and always telling me to “shhhh”. Looking back this was probably due to me being full of carry-on and giggling which can get wearing as an adult especially if you are busy completing tasks or working. But although she could be serious, she was calm and kind. I remember being quite accident prone and my mum running through to my gran for help. Once I had managed to cut my hand open on a sharp-edged pencil tin, as my mum was squeamish and there was blood everywhere she ran through and gran calmly cleaned up my hand and dressed the large cut, I still have the scar on my hand. My Gran loved to bake and make jam, she used to make me a mini jar of raspberry jam to take home. I remember eating many of her freshly baked pancakes, scones and tea loafs. She was a very well put together woman and always wore carefully thought-out matching outfits, she had a broach and earrings for all occasions.
My Gran had a stroke when I was around twenty years old, she had previously had a few health complaints, high blood pressure, angina, and diabetes type 2. She had managed her health by changing her diet alongside regular exercise and medications to regulate her blood pressure. Her first stroke reduced her mobility and partially affected her speech. There were other changes, word finding, and a poor short-term memory, these became more apparent as time passed by. My grandpa helped to care for and support her, helping with personal care and medication management. Eventually my gran was diagnosed with Vascular dementia.
“My early memories of my gran where she always wore clothes that matched, she bought good ice cream, was a great baker and made the best raspberry jam I ever tasted. She also used to tell me off for being too loud and carrying on with my cousins…With the busyness of life I hadn’t noticed the decline until it was suddenly there.” (Reflective diary excerpt 13/05/23).
It was around this time that I got married and moved almost a hundred miles away, around a three-hour drive from my family. My grandparents were able to attend my wedding as my gran had recovered enough from her stroke to feel up to attending. It was at this point that I remember noticing the toll her ill health had taken on them both. They both looked tired, my Gran was wearing mismatched clothes. Looking back, I feel guilty as I wish I had gone over to help her get ready and save my Grandpa struggling to find an outfit.
As I had moved a distance away, each time I had visited I noticed huge changes in my grandparents, they looked worn out, my gran’s short-term memory had worsened to the point she did not recognize my younger sister. Late one evening in 2005 I received a phone call from my dad that I had dreaded, my gran had been rushed into hospital and had subsequently died. I felt so upset, helpless and guilty that I had not visited enough and that I didn’t live closer so was unable to go over and be with them that evening.
After my gran’s death I noticed a steady decline in my grandpa’s health. While he had been helping to care for my gran, he had been feeling unwell and had not gone to the doctors as he thought it was related to his poor hearing and sensitive stomach. As it turns out only a few weeks after my gran’s death due to his worsening symptoms, my dad insisted he went to the doctors and then went with him to the hospital for a subsequent diagnosis. My grandpa was diagnosed with stage 4 cancer and unfortunately, never returned home, he died a month later in hospital. He had been so focused on caring for my gran and her health that he had not maintained his own and had not told anyone how ill he had really been. This was another blow to me and my family. I wish we had known earlier when there was a chance to help to treat him and perhaps, he could have been with us a while longer.
My bold journey
I remember looking forward to sessions as they enabled me to gain social connections with other people at a what was a very isolated time. Prior to the programme starting I received a large box of arts materials, written cards to use if needed during the session e.g., saying I can’t hear, to indicate any issues during the session. Within this box I also received instructions and information on each week’s session in clearly marked envelopes, this helped to guide me through the experience. You might remember receiving your bold box too and looking through everything in anticipation.
My bold journey
‘bold’ “…the tasks involved giving yourself permission to slow down, to re-group, think and reflect. When taking part in a reflective walk I remember thinking I don’t have time for this…but once I allowed myself to have permission to take a moment to see and reflect on my surroundings, my breathing I began to notice each moment, I felt at ease.
I felt I was in a safe space when attending the sessions as if I had a newfound freedom that gave me permission to take time and allow myself to create, enjoy, feel and it helped me to learn more about myself and others” (Reflective diary excerpt 23/07/23).
I enjoyed being able to share my voice in what felt like a safe place. These activities helped to paint a picture of who each person was and made the group feel almost like family or trusted friends, it was a place of comfort. I was inspired to create a series of sketches and brief written explanations which I went on to share with the bold community. Each sketch represented some of the things reflected on within the bold programme, this is also something that I have continued to be inspired by.
After taking part in the bold programme, I became part of the bold community. This meant I could contact fellow bold partners and facilitators. Enabling me to take part in further bold events and helping to maintain the connections I had made.
I took part in a songwriting online bold partner event, this lasted around three sessions with a professional musician. Those who took part were shown how to write a song, practice singing techniques and then divided into groups, with each group containing two partners. The groups each wrote song lyrics and shared these with the group. A professional musician went on to put these lyrics to music, these were then recorded and sent out to the members of the group. I found this session inspiring as I watched on and listened to other members of the group recite their words and the songs that followed. One of the songs was then recorded this one helped to communicate something quite special, it showed that regardless of age or illness people can connect find common ground and just be.
The concluding blog will go on to show the results of the study by collecting the experiences of some bold partners and comparing these to my own. It will also help to explain the process used to analyse the data collected. I hope you have enjoyed this blog series so far and I look forward to sharing the findings of this study!