The Thesis: Sitting on the edge looking into the abyss. Some tips and hints I am trying to live by.

I recently wrote this blog recently for https://www.dementiaresearcher.nihr.ac.uk/ and was really glad that people read it and found it useful and interesting. There seemed to be a fair amount of tweeting around it and this I wondered if it might be useful to re-share on my own blog. You can check out the https://www.dementiaresearcher.nihr.ac.uk/ version here:

https://www.dementiaresearcher.nihr.ac.uk/guest-blog-the-thesis-sitting-on-the-edge-of-the-precipice-looking-into-the-abyss/

I have currently got around seven months until the end of my PhD – until my funding runs out and I officially enter a period of CRS (Continued Research Status). Prior to applying for my PhD I did not know that this extra period of unpaid limbo time existed. I, like many people I now speak to, thought that the period of the PhD was literally the period of the PhD. That I would do my research, write my thesis and submit it as well as compete my viva within this period. Interestingly I have realised that this is not necessarily how it works. The CRS period is a useful safety net. It gives me the time to finish my thesis, to finish my work, properly. That said I do need to write most of my thesis before then.

Thinking about my thesis I have noticed a strange physical sensation. It is not dissimilar to standing on the top diving board deciding when to jump, or at the start of a marathon race waiting to get doing. I suspect this feeling is probably useful. This same feeling (a bit like nausea) has helped me run a couple of marathons, write a couple of books and write and submit my NIHR fellowship application. Without this feeling, I may lose track and get distracted. Yet I also risk letting it dominate and entering a phase of stress and anxiety. This would not be so helpful.

 

So. How can I maintain an equilibrium. I have managed to ride the PhD wave relatively emotionally unscathed. Much of this is due to the epic supervision I have and doing a lot of exercise (most days- it really helps me excise my demons).

 

But I just wanted to share a few tips and hints that seemed small but have really helped on route:

 

  • Write a Gantt chart at the start of your studies – identify all the tasks and milestones you anticipate and outline when you will work on these.

 

  • Revisit the Gantt chart regularly with your supervisors and remind yourself of your schedule, this is your to-do list and should be updated with everything you have done and will do. Refine and adjust accordingly.

 

  • Include writing time on the Gantt chart. Writing time for articles and thesis chapters. You may even wish to write a new or extra Gantt chart specifically for the thesis chapters, including timelines for initial versions and first, second, third and fourth edits.

 

  • Plan your thesis chapters early-ish. Write up a potential list of contents as soon as you can. It may seem ridiculous but you can always revise them. At least you’ll have something to visualise. This will form your thesis plan.

 

  • Some universities accept a thesis by publication i.e. your thesis chapters may comprise articles you have already written and published. Many universities do not allow this, but writing an article can be extremely useful and time efficient when it comes to turning it into a thesis chapter. You basically need to re-visit and rewrite the article to sit within the entire thesis story- explain how it fits into the thesis puzzle. After all your thesis is basically a story or an account of what you have done over the last 3-5 years that comprises the PhD – this is your exam paper.

 

  • You may write your thesis the other way round, and that is also good. In fact, by writing the thesis chapter you may later have the materials to edit down to an article.

 

  • Don’t feel intimidated- this thesis is achievable. Demonstrate this to yourself by breaking down the thesis into its component parts- how many words will it be, how many words approximately per chapter, how many sub sections in each chapter. Do you already have those chapter headings and sub sections? As you work through each stage of your research – planning projects and experiments it is likely that you will have created plans and protocols and stages that you can apply here within the subsections.

 

  • A good way of doing this is to have a look at other thesis in your department, together with the thesis guidelines for your university. Just as you would look at a journal to see if they publish similar articles to yours and analyse the style of both the article and that outlined in the style guide. Identify word counts, guidance on titles, formatting, pages, referencing – it’s all useful stuff.

 

  • Set yourself small goals each week. Perhaps to spend x amount of time on y. To tackle x section. To write x no. of words. Whatever works for you. Block out sections of your diary, protect them from other tasks so you can write your thesis. Writing is just as important as other PhD tasks. And getting some words under your belt will help you feel a lot better, there will be evidence you are getting there. Tick off your small goals and reward yourself.

 

  • Tell your supervisor how you feel. Or perhaps your friends and colleagues. Doing a PhD is stressful sometimes, but so is working in general, so is having kids, so is paying the rent or the mortgage, so is being a grown up. You are not on your own in feeling a bit stressed out by life.

 

  • And no-one explicitly tells you the rules for doing a PhD before you start. That is kind of what your supervisor is there for. Just as your manager or supervisor at work would be. To show you the ropes.

 

  • Your supervisors are there for you. They want you to succeed. If you don’t succeed that reflects on them, so if they suggest changes or give feedback you feel cross about, it’s fine to be cross for a minute and then think about it a bit more. Try it out. Talk about it. They have a lot more experience in this field than you do.

 

This is your PhD (no-one else’s) and you are a grown up. Own it.  Once you have it, no-one can take it away. So take it by the horns. Get it done. Put it on your CV and wear it with pride. It is pretty darn impressive! Keep your head down, write and you will be rewarded (with champagne hopefully!).

 

I suspect you know all this- I kind of do. I just need to get on with it. Eeek.

 

 

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Make Better Conversations work for your clients (and win a £30 Amazon voucher)

Working as an SLT in clinical practice is hectic. Our caseloads and waiting lists are often hefty and weigh on our minds from the moment we start off from home to get to work to the moment we get home from work (and often haunt us in the middle of the night when we suddenly think about poor Mr Smith who really needs a review). We want resources that are quick and accessible, and yet evidence based and effective. Then along comes a resource like Better Conversations. “What a relief it’s free AND evidence based!” we shriek. But is it really that helpful? What bits of it do we actually use? What bits of it are actually the most helpful?

 

We want to evaluate the impact of Better Conversations with Aphasia (BCA) on the clinical practice of SLTs. BCA currently has 6300+ registered users, worldwide. We are starting with SLT users who are practising in the UK and Republic of Ireland. We want to know how you are using the resource, and its impact on you and the services you provide. It is really important for researchers to know the impact their resources have on SLTs’ everyday practice. If we know what works we can make more of it, and if we know what needs changing we can make sure we do that.

 

To this end we are disseminating a survey for SLTs to complete:

 

https://opinio.ucl.ac.uk/s?s=59755

 

The results of this survey will be presented and published and will help us with future research to directly address the practice-evidence gap by exploring the barriers and supports to implementing BCA in daily clinical practice. We want to build a community of practice – a clinical academic alliance to develop an intervention that is usable and useful. We need your help!

The survey only takes about 15 minutes to complete AND you can choose to go into a prize draw for a £30 Amazon gift voucher!

 

If you need any more convincing I thought I would borrow 7 reasons for doing the BCA survey from a recent blog I read by Madeline Cruice https://blogs.city.ac.uk/luna/2018/11/08/why-it-matters-to-find-the-time-to-complete-the-luna-slt-survey/ . This blog discusses the 7 reasons why we should do surveys based on a recent article by Boaz et al https://bmjopen.bmj.com/content/5/12/e009415.

 

So here are the 7 reasons for doing the BCA survey (borrowed both in content and sometimes wording from Madeline’s blog):

 

1. Just being involved in the processes of the research can improve performance, by going online, reading the survey questions, considering the relevance to you and your practice, and how important it is to your clients.

 

2. Engaging in the survey might change your attitudes or behaviours around communication partner training and using Better Conversations. Doing the survey might prompt a conversation with colleagues about Better Conversations and treatment with clients with aphasia, and you might even decide to follow this up in a future journal club.

 

3. Completing the survey might help you be more aware and give you more understanding of the specific research findings, when we do start discussing and disseminating these later this year.

 

4. Completing the survey might make you interested in finding out more about the project, might encourage you to read one of the papers flagged online on our website https://www.ucl.ac.uk/betterconversations/aphasia or ask a question directly to our team: betterconversationsaphasia.pals@ucl.ac.uk

 

5. Being involved might help you apply the findings of the research more (once they’re out) in your local setting with colleagues and in-service presentations.

 

6. Being involved is one relatively easy way of keeping up to date with an important and emerging area of rehabilitation research – complete the survey, and then go to our website and subscribe by email for automatic blog postings delivering project updates and relevant information to your preferred inbox.

 

You can also enter it into your Continuing Professional Development log (win, win!).

 

7. Finally, the obvious one is that being involved makes the research more relevant for practicing speech and language therapists and for services, which is what we here in the Better Conversations team are all about.

Convinced? So what are you waiting for! Join our BCA community of practice by completing the survey here: https://opinio.ucl.ac.uk/s?s=59755

 

This seems like the perfect moment to remind you all about our first ever Better Conversations conference, later this year (November 6/7th) here at UCL, focused on a range of adult work. Look out for the information- or email us and we can send it directly! betterconversationsaphasia.pals@ucl.ac.uk or a.volkmer.15@ucl.ac.uk

 

Can we reduce the stigma around dementia: Ideas please.

 

The stigma around dementia remains massive. Dementia is one of the most feared condition by those in their 50s and 60s, perhaps partly because of what people associate with dementia. People assume that dementia results in a total loss of all cognitive capacity- it is not uncommon to hear a daughter, son or partner of a person who has just been diagnosed with dementia stating that the person will now no longer be able to manage any finances, shopping, household chores. They will not be able to have any responsibilities or make any further decisions about anything again. Occasionally I have also met people who have been excluded from their families and communities because of their diagnosis. Who have lost business’, their homes, their identity and the people they love. Generally, because the dementia has mistaken for something else. Just once I met someone who had been told she had been inhabited by “bad spirits” : the dementia.

 

I have recently had a number of conversations around the stigma associated with a dementia diagnosis. The difference is this time that I was talking about what we as health professionals could do to reduce this stigma.

 

One way of doing this is to co-produce work with people with dementia. To work together as a team. The steering group on my research project has been working with me throughout my project (3 and a half years nearly- to date). This steering group is made up of three couples- where one person has language led dementia (primary progressive aphasia- PPA), and their partners. The group provide advice and guidance on the development of my work. One aspect of this has included developing information (modules) that will alongside the intervention we are currently trialing. The group felt that we couldn’t put the intervention out, freely available, on the internet without providing some basic information on what PPA is, what conversation training is and what other resources and information there is on PPA.

 

We have most recently been working on the resources module. Included in this was going to be a list of communication tips and hints. Yet on discussion the group felt these tips were too narrow, too specific. They wanted to create a set of tips and hints to help people live well. To dispel some of the myth around what life is like following a diagnosis of PPA. We wrote a list of activities, and ideas on things to do (together) that are not dependent on language. Things that people in the group, their friends and family like to do. The list is long- from crafting to walking to attending concerts. And it is exciting. After we wrote the list (it took some time) the group felt electric. Everybody was excited by the list. We all felt that it was an incredibly positive thing to do. That we had created a really useful resource that will remind people of everything they CAN do.

 

I am now working with a colleague to create another small idea to reduce the stigma around dementia. We would like to create a video recording of an education session. The aim is to:

  • Help people understand why dementia affects language and communication
  • Show how people can have better conversations with people with dementia by using some simple communication strategies
  • Reduce the stigma around dementia by highlighting that people with dementia lead rich and fulfilling lives, can make their own decisions and lead a good life.

 

We want to record it so that we can share it for free via any possible medium- the internet, word of mouth and so forth.

 

But what we would really like to know is would people be interested in this and what would they like us to do in such an event?

 

Do share your ideas and comments! They are always useful.

 

 

 

 

Old and young: overlaps between developmental language and acquired language disorders

 

Despite being an adult SLT (ever since graduating) I recently went to a series of really interesting presentations on developmental language. This is not that unusual, I often listen to colleagues speaking about their work in this area. And being a PhD student is a wonderful opportunity to take advantage of the incredibly rich environment in which I am working. Even in the 4th year of my PhD I am attending these talks. Being a PhD student is an incredibly valuable experience, and writing up my thesis is not necessarily the most important part of it. Here are some interesting pearls from this recent series:

 

There are many links and parallels between language development in children and loss of language in adult acquired neurological conditions. One talk I attended focused on the importance of stress, tone and emphasis in infant directed speech. Over-emphasising on syllables and words can enable infants to start parsing and following sounds, words and turns. Using strategies such as eye contact, and the name of the child can act as signals to gain and maintain attention. It is not so different in dementia- using a persons name and making eye contact are incredibly useful for gaining their attention, and for many who have less cognitive resources and reduced auditory processing there is now evidence indicating they may benefit from that type of over-emphatic speech. Despite it being previously considered fairly patronising it may be an important strategy to aid comprehension for some individuals with dementia.

 

Learning conversational turn taking from parents or communication partners is another area that is thought to contribute to language development. Both in the act of, and content of turns, breakdowns and repairs in conversation. The communication partner plays an important and valuable role in conversation and turn taking. Similarly the skills of the communication partners are often vital for adults with aphasia and dementia. People with aphasia and dementia are often able to continue participating in many aspects of conversational undertaking, and a skilled communication partner can enable them to continue doing so. A skilled communication partner can modify their turns to scaffold the conversation for the person with aphasia or dementia.

 

I have always found how children learn to read a fascinating process. And the research indicates that learning to read by sounding out- so through the phonics system, is equally effective as learning to read by learning the orthographic word forms. On imaging however it appears that the phonics route is significantly less cognitively effortful. And given that a shocking number of the adult population are not able to read (around 15% apparently) this may be useful for teaching adults. Adult literacy is extremely difficult to untangle. It may often be complicated by dyslexia, social communication difficulties and socio-economic status. But we also know that adults with developmental dyslexia may be more at risk of dementia than their peers. Perhaps this type of work could join some of these dots and provide some suggestion as to why this might be the case.

 

As a bilingual person, bilingualism fascinates me. There is some suggestion that children spread their vocabulary acquisition across two languages, but eventually catch up. That reading and writing suffer as a consequence, and it could be difficult to translate skills from one language to another. But the idea that bilingualism can protect against the onset of dementia is wonderful. Yet Asia is experiencing significant increases in the number of people living with dementia and here bilingualism is far more complex- people switch through 2-3-4 languages within a conversation, perhaps based on ease of word retrieval or contextual cues. How does this factor in?

 

There is so much exciting research in my department, and listening to fields outside my own can be inspiring. We can draw links, think creatively and explore alternative theories. There is so much more work to be done! I feel so privileged to be exposed to this environment, to be working in such a fascinating field. I can’t wait to do more than my PhD- to continue in this clinical-academic field. I have so many ideas!

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.

 

 

 

 

 

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.