The student voice: Translating what I learn

Globally, the number of people living with dementia is increasing. These increases are not predominantly in the English speaking world- older people are living longer in places like India and Africa and the rates of dementia are swelling. Thus it seems logical that we should be sharing our resources on a worldwide scale, translating anything we learn to meet the needs of others across the globe. This may seem simple, but here Tiffany Cheng sensitively reflects on how cultural differences can make this process more complex. These are issues that we should consider in our routine clinical practice – with people from all different cultural backgrounds.

Having read Jess, Alice and Olly’s wonderful stories about their BCPPA journey, I carefully considered what else I could write about. Should I describe how exciting it has been for me to travel to see participants in all the lovely English cities that I have never previously visited? Although, we have not had the time to explore the cities after completing the post-intervention assessments at the participants’ homes. We simply getting on a train, and travel to an ‘unknown’ city. This has been exhilarating enough for me. However, after some thought, I have decided to write about something rather different.

 

As a student speech and language therapist from Hong Kong, I have always thought that London is very similar to my hometown. Both are multi-cultural cities, both are busy all the time. Some of these familiar elements were what attracted me to do my training in this city. But since starting this course, one thing that has concerned me, is how I can adapt the therapeutic skills I am learning here, to a completely different language – should I decide to work in Hong Kong after my training. However, following a conversation I had with Anna the other day when we were discussing the BCPPA project, I have really changed my mind.

 

In the meeting, Anna told me her experience in Hong Kong when she was invited to a dementia conference around a year ago. During the conference, she had a conversation with one of the professors from Hong Kong, discussing the appropriate forms of intervention for people with dementia in Hong Kong. That professor stated that many group interventions have been difficult to implement in this population, due to the underlying cultural variations in comparison to the western countries. People would rather stay quiet and avoid sharing their views in a group session because they are scared that they would look stupid if they give a wrong answer, or even if they give an answer that is different from the mainstream consensus. This story has been very inspiring to me, as I finally became aware of the importance of the cultural influence on therapy outcomes, it is not simply a matter of language.

 

These issues also immediately remind me of how I was educated when I was at school. I was always encouraged to be a passive learner in our spoon-fed education system. We would only put our hands up when we were 100% certain that we had the correct answer, we never ask ‘stupid’ question in front of the class and we would wait for the ‘model answer’ to be provided by the teacher. Having studied in the U.K. for 6 years now, I have now been told that ‘there is never a stupid question’, as it is these questions that make us think and learn.

 

Having realised how cultural differences could have an impact on therapy outcomes, I then reflect on how I could adapt BCPPA to the Hong Kong population in order to maintain its effectiveness. Even though BCPPA program is a 1:1 therapy, a lot of self-reflection is required. Both the person with PPA and his or her conversation partner need to participate in analyzing videos of their own conversations, to identify the facilitators and barriers in their conversations, in order to set their therapy goals. I would anticipate that in order to maintain the same level of effectiveness, the level of support required from SLTs would increase significantly. I am really hoping that the skills I am learning in my speech and language therapy training will allow me to adapt the BCPPA to effectively support people with PPA in another part of the world. Yet I must always bear in mind that culture is a vital factor that influences therapy outcomes, especially when working in a multi-cultural city, like London or Hong Kong.

 

 

 

 

 

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The student voice: The privilege and challenge of working in people’s homes

 

As I mentioned in November and December there are currently four fantastic student speech and language therapists working on the BCPPA pilot study. Their role is to visit participants who are enrolled on the current intervention study and complete the post-intervention assessment. The students are all blinded to whether the couple they are visiting have had the BCPPA intervention we have designed on have had no treatment. Each time a couple consent to participating on the pilot study, the students make arrangements to visit them in their home to complete these assessments. In this insightful blog post the wonderful Olly Sawyer @OliverSawyerSLT talks about these experiences of entering people’s homes.

 

An exciting part of being on the BCPPA team is traveling up and down the country, visiting people with PPA and their conversation partners at home. During the journey to one such visit, I thought of the fantastic posts already up on the BCPPA blog, written by fellow students Alice and Jess. I considered how I could follow them. How could I put my own stamp on my blog post? And just like that, as I was walking from the train station to visit a participant’s house, I decided to write about what it was like to visit people at home.

 

On this occasion, I was greeted briefly by the partner at the front door, and before I could reply she had turned around, walking back down the hallway. “Come in Olly, would you like a cup of tea?”, she said. “I’d love one, thank you’”, I replied. I followed her into their cosy kitchen where I was offered a biscuit as I put my bags down. As the kettle was clicked on, the partner turned to me and said “You know, I’ve really been thinking about what we spoke about last week. I feel like I made it all seem rosy, when in fact it’s not”.

 

She was referring to the conversation we had had the week before, when I had been to visit her and her partner with fellow student Jess, to conduct a series of post-intervention outcome measures as part of the BCPPA project. Whilst Jess was busy conducting the language assessment and quality of life measures in the kitchen with the man with PPA, I was deep in conversation in the living room with his partner, completing questionnaires looking at carer burden and stress. I thought about the hugely challenging and personal nature of the questions, and how tricky it must be to answer them. “Perhaps I had made it sound better than it is, I don’t think I was entirely truthful” she said as she handed me a cup of tea. And we started chatting about how she had completed the measures. I reassured her she had provided the information we required. And she talked about the balancing act that is her daily life.

 

Another role of the student SLTs on the BCPPA project is ensuring the couple make some videos of themselves having conversations. This is another post-intervention outcome measure. We set up the iPad with them, making sure they understand how to use it, and leave the room. Then leave the iPad with the couple for a week, in order for them to film themselves to get a more natural picture of their normal conversation. While this couple were chatting I overheard the conversation about holidays switch quickly to the fox that was making its way through the garden. The couple sat closely together, watching it slink and sniff through the flower beds outside. Despite the man’s difficulties with naming and constructing full sentences, he was able to communicate that he would like to go somewhere warm on holiday this year and then chat about the cheeky fox. After the 10 minutes was up, I went back into the room and we all discussed the fox.

 

Reflecting on the experience later I considered what had happened. I had been sat on a comfy sofa next to a fireplace, decorated with family photos, achievements framed neatly on the walls, and with the TV guide sat upon the footstool. I had been conducting research in someone’s home. I thought about the immensely personal and private space of what we call ‘home’: for me, it is where I escape to, where I confide in my partner after a tough day on placement, and where I reminisce old memories and make new ones. ‘What a privilege’, I thought.

 

We are mere strangers going into their homes, until we sit down and have a chat. Speech and language therapists are in the lucky position that having conversations often forms part of our assessment and therapy intervention. I enjoy this aspect of our work, which inherently invites personal topics to come up in conversation. Being on the BCPPA project has allowed me to reflect more on what ‘home’ means to me, and how I would feel if someone came into my home to ask me questions and to assess my language. I can imagine it could be quite unnerving, but to sit down with someone and to have a cup of tea (Yorkshire, please) would settle me right in. As health professionals we must always be mindful of what it must be like to be in other people’s shoes, inviting a guest into our personal and private space.

 

Let’s talk about dementia…more.

It is around this time of year that I revisit my lecture slides for the speech and language therapy students I teach. I am now in the fourth year of teaching on the MSc at UCL- I teach two 3-hour lectures focusing on assessment of dementia and then management of dementia (language not swallowing- swallowing is discussed elsewhere on the course). So, 6 hours. It doesn’t seem adequate given that the number of people living with dementia is increasing exponentially. In 2015 it was estimated there were 850,000 people living with dementia in the UK and it is anticipated that these numbers will rise to over a million in 2025, and over 2 million in 2050. We are seeing massive increases in the number of people with Dementia on SLT caseloads too – more increased referrals than any other neurological condition.  In comparison there are around 250,000 people living with stroke related aphasia in the UK. Given the certain progression and cognitive decline imminent in dementia it might be suggested we need more teaching on dementia than on some other conditions. But given that neurologists and medics don’t really refer so many people with dementia to us for communication interventions this may be a more gradual process, as our role with people with dementia evolves.

 

This increase in numbers is because we have more people in our population who are living longer. The actual percentage of people living with dementia within each decade is going down – in other words we seem to be living longer and now also getting generally healthier (even in our brains). Additionally, life changing diseases such as cancer are much better managed and more people are able to survive a cancer diagnosis. Consequently, dementia has become the most feared condition amongst people in their middle age, more than cancer. There is no cure for dementia, no treatment that can slow or prevent the inevitable cognitive decline.

 

Almost everyone has been affected by dementia in some way, be it a friend or acquaintance, a distant relative, a close relative or themselves. This is a change from the recent past; older people may tell you that none of their grandparents had dementia- it wasn’t really around when they were young, or at least it wasn’t spoken of or understood. As the number of people living with dementia increases, our understanding of the disease improves and we hear more about it. Dementia features in the paper more and more often. People want to know what they can do to prevent the onset of dementia, how can they keep their brains as healthy as possible, what hope is there for treatment, and what about the care for those vulnerable people living with dementia.

 

I have decided to start my lectures with some examples of the current tabloid headlines from 2018:

 

Dementia cure ‘Within a Decade’ (Daily Express)

 

Eye test to Beat Dementia (Daily Mirror)

 

Toxic air ‘to blame for 60,000 cases of Dementia (Daily Mail)

 

Eat curry to beat dementia (Daily Express)

 

Dementia risk from Diabetes (Daily Express)

 

Our patients and their families are searching for information and answers about dementia. As health professionals, we may be asked for information about dementia. We need to know what we can offer, what therapy interventions work and what the evidence says. We also need to let other professionals (the people who refer to us) know what we can offer. We need to spread the word, we also need a better care pathway. But one step at a time- i also lecture to a group of students doing a masters on dementia at UCL (often medics or psychologists) and another lecture at the Institute of Psychiatry to a group of students doing a masters on neuropsychiatry (often medics and psychologists).

 

At the start of my lectures with the student SLTs I always give the, the option of leaving if they need to, this is an emotional and challenging subject at times. But I also feel that we all need to know about dementia. I often find people feel less anxious when they understand it more, when they learn about the strategies available, when they talk about it.