Shared interactions through poetry in dementia

This year I have five new student speech and language therapists doing their project module with me- working on the BCPPA pilot study. As part of their project work I have challenged each of them to write a blog- just to have a go at disseminating and networking in the professional social media domain. First off we have Connie Baird , who has shared a really fascinating and exciting experience of working with people with dementia using poetry to support interaction. Such a creative and simple idea.

 

Since this is the first time I have ever written a blog, I spent some time thinking about what to write. It was surprisingly tricky to decide, but I’ve decided to talk about how I first began working with people living with dementia.

 

During my undergraduate degree, I joined a shared poetry group for nursing homes and hospital wards, which used literature to help build social bonds between residents. The scheme focused on improving quality of life using bibliotherapy, an intervention that looks at an individual’s relationship to literature – their memories and their responses to it. Sessions would consist of someone (usually me or another student) reading aloud a poem, followed by a discussion as a group. I thought I would share some poems that were particular favourites, and some of the memories that go with them.

 

A popular poem was Daffodils by William Blake. We always started the session with one of these classics, as many residents were made to memorise them in school. It was a great way to get people involved – in one session, I read just the first line before a lady in the back finished it off for me, word for word. I didn’t get tired of reading this one almost every week, as the stories that were shared were always entertaining – lots of people shared tales from school and memories of growing up in rural Nottinghamshire. We all enjoyed reflecting on sunny Spring days even when it was raining outside.

 

When I read aloud The Lamb and The Tyger, one man was reminded of a teacher with an undying love for William Blake. It brought him back to mornings at primary school, standing in front of his class, reciting the poem himself. These poems wrestled with religion and theology, which led to some interesting discussions about respecting people’s beliefs. We used to take out one of Blake’s drawings during the reading for people to look at and comment on, which helped those who weren’t able to hear as well. Blake’s poems are full of rhyme and repetition which also helped participants engage with what they heard.

 

We also read less high-brow stuff. A favourite was Pam Ayres, who entertained us with stories of eccentric aunts and irritating husbands. I quickly became familiar with her poem Oh I wish I Looked After Me Teeth, as it proved ever popular with those who could remember her from late-night television in the 80s.

 

An older poem might bring back memories of the classroom, whilst a poem about winter might spark a conversation about Christmas and snow. Even nonsensical poems such as Carroll’s Jabberwocky could inspire a chat about cadence and rhythm. I often read Carroll’s stuff when I felt like the session was going haywire – when someone was falling asleep, or another person told us they were bored. If you read Jabberwocky in a loud, animated voice it can awaken and excite the room.

 

Not all of our sessions were successful, and lots of people were not interested at all. On reflection, our 1:1 sessions were often the best way to create conversation, especially with those who didn’t get along well in a group. I’ll always remember working with a man – described as non-verbal – who ended up adding a few words about his childhood in Scotland after a reading of Robert Burns’ A Red, Red Rose. Finding his reason to communicate felt like a huge win.

 

This type of therapy is not in an SLT’s remit, but it’s helped me think about other ways I can encourage communication in my (future) profession. In years to come, I’d like to explore how shared reading groups can be run with SLT support. Dr. Kevin Harvey organised the group in Nottingham, and has also written a paper about on the power of shared reading, which can be found here.

 

Hope and excitement at the British Aphasiology Society Symposium 2019

I attended the British Aphasiology Society Symposium in September this year with a few of the @UCLLangCog researchers including fellow PhD student and SLT Firle Beckley. It was a really inspiring conference and given that Firle had written a wonderful write up of the conference it seemed sad not to share the key highlights and learning points. @FirleB has kindly shared her experiences of the conference here so no-one on the twittersphere needs to miss a thing!

I have to say, the 2019 BAS Symposium was one of the most enjoyable and constructive conferences I have ever been to (and not just because I received best lightening talk on the first day!). If I were to review all my highlights in depth I would be here until Christmas, no one has time for that. So here are my themed highlights. For me there were two key themes to this conference. One gave me hope and excitement about the future of aphasia therapy, and the other practical reassurance about how to get there.

 

The first theme was creative wellbeing. Ian Duffy a survivor of two brain hemorrhages powerfully illustrated the importance of creativity at the conference opening with his beautifully shot video ‘The Fence Painter’ (https://youtu.be/Jfv3BT6mBR0). From pebble collecting, to lawn mowing with a difference Ian revealed how creativity can be motivational and a deeply personal companion when defining your post stroke self. This creative wellbeing continued in Ciara Shiggin’s talk. Ciara argued the case for moving away from the classic pathogenesis cure to salutogenesis i.e. identifying goals and outcomes to support a person’s mental health and wellbeing. A simple flip and therapy becomes a positive activity, pursuing wellness rather than chasing ‘cure’. She demonstrated how salutogenesis partnered with an asset based approach changed the nature of living well with aphasia in Norwich, including the opening of the Community Aphasia Café and UEA’s Conversation Partner Training Scheme. The creativity these two changes created in Norwich were tangible in the glowing, and emotional in the introduction Linda Watson from the UEA Aphasia Research Collaboration gave to Prof Simon Horton. Her testimony about the impact Simon and UEA’s Conversation Partner training scheme had on her self belief and confidence was inspiring. Sarah Northcott (City University) used her 5 minute Soapbox slot to describe the power Solution Focused Brief Therapy (SFBT) can have for a person with aphasia’s mood. Her case study brought the power of SFBT to life, as she explained how it can be used to acknowledge the darkness aphasia can create aphasia, whilst looking for the light. Other creative presentations included Prof Jane Marshall’s EVA Park, a virtual world including two new updates: a talking penguin, and Ruby Robot, an avatar you can practice your narrative with. One criticism of EVA Park from the audience (you know who you are) was that EVA Park is too nice. Watch this space for ‘DARK Park’ an altogether grittier experience…

 

The second exciting theme of the conference for me was the speech and language therapist’s role in facilitating living well with aphasia. Prof. Linda Worrall championed this with her opening talk about the 7 habits of effective aphasia therapists. A great talk and now published paper (Worrall, L. (2019). The seven habits of highly effective aphasia therapists. Aphasiology. https://doi.org/10.1080/02687038.2018.1487022). Prof. Linda Worrall gave seven key habits clinicians can use to reflect on their own practice. These highlighted the importance of building rapport, and our role in ensuring the end goal of therapy is living well with aphasia and being able to self-advocate. Indeed, Sarah Scott on day two of the conference highlighted her biggest challenge to living well with aphasia being the public not understanding what aphasia is. The invisibility of aphasia is a big problem. Prof Nina Simmons-Mackie highlighted the abysmal rates of understanding of aphasia in the US and UK in her closing keynote of the Symposium. However she offered a simple change we could all make as a positive start towards improving public awareness. Next time we are asked what we do, rather than saying “an SLT” (and then having defend the profession as not being all about elocution), describe what it waking up with aphasia is like: “imagine waking up in a hospital, you have no idea what has happened and when you try to find out, you find you cannot talk, the right words do not come out of your mouth, and no-one understands you. That is aphasia and I work with people who experience this”. Prof Nina Simmons-Mackie explained how making the impact of aphasia real alters people’s responses, leading to probing questions about the nature of aphasia and whether it could happen to them. One small step for we can all take to raise UK awareness of aphasia above 5%.

 

Finally, my key learning points from the Symposium where:

  1. There are many creative technologies out there to support your clinical work from the comprehension aphasia therapy app Cue Speak by Jon Hunt, to app supporting creative writing (MakeWrite from City University).
  2. Technology cannot replace a good therapeutic relationship, which is at the heart of all good interventions.
  3. People with aphasia report using their phones more than other devices on a daily basis to compensate for their aphasic difficulties.
  4. There is a good therapeutic rationale for working with people with Primary Progressive Aphasia. Living well with PPA is about developing good conversation flow (Better Conversations with PPA) rather than re-learning words that will be lost again further down the road (see Anna Volkmer, UCL for details)
  5. Improving discourse and conversation skills for the PwA and conversation partners is key to improving participation in wider society.
  6. SLTs need to unite globally to raise awareness of aphasia within the public domain. Prof Nina Simmons-Mackie’s quote of a 5% understanding by the UK public as to what aphasia is (someone thinking it was half a facial) is not good enough. Living well with aphasia is a community, not individual responsibility!

The end is nigh….of the doctoral fellowship funding.

Today marks the last day of my official funding for my NIHR Doctoral Research Fellowship. It feels like a rather serious date. I have been an NIHR Doctoral Research Fellow for four whole years. During this time I have:

  • Started my PhD and nearly finished writing my thesis – I will be submitting it soon all things being well! (Cross your fingers for me!)
  • Created a manual for a communication partner training intervention called Better Conversations with PPA and have published it its own part of the UCL eXtend website, with a number of training modules to help people engage and learn about it. Most of this has been coproduced by people with PPA, their families and other professionals (SLTs). (We will be officially launching this at some point!)
  • Published 4 peer reviewed journal articles directly related to my PhD and another 2 due to the links I have forged during the course of my PhD
  • Done conference presentations, both locally, nationally and internationally and now know a lot more about how to put together a conference poster and present to an academic audience (and have incidentally visited countries I had never been to including Hong Kong, Portugal and the US)
  • Lectured on the speech and language therapy training Masters here at UCL- all about dementia, and another one on ethics (and Mental Capacity!!). I have also acquired another regular lecture on the Masters of Dementia her at UCL- telling other professionals all about SLT in dementia.

BUT I:

  • Have NOT learnt to feel more confident about ANY statistics programs. But that’s ok- because I know my limitations.
  • I am not able to spell any better, nor has my grammar improved. Academic writing is a slog- requiring multiple revisions and lots and lots of editing.
  • I do not feel ANY more comfortable about listing my achievements- it still feels terribly awkward and slightly wierd (I don’t know any SLTs who are comfortable with this type of thing).
  • I am no cleverer than when I started.
  • I still ask stupid questions.

More importantly I have had the most wonderful opportunities and experiences. I have enjoyed every minute of this experience. I honestly feel valued by all the people in the department I work, by both my supervisors, my mentor, my peers and all the students I have been working with. It feels like the work I have done here will make a difference. I can cascade the work I do and support multiple other professionals to, in turn, support people with dementia, primary progressive aphasia and their families and other communication partners.

The worst thing about coming to the end of the fellowship is that it feels like I am leaving something behind. It feels like the end of an era. I feel rather sad about the multiple goodbyes I have had to start saying. One of the hardest has actually been saying goodbye to the people with PPA and their communication partners who have worked on the steering committee for my project. These people feel like colleagues. They are as invested as I am. They feel as passionately (if not more passionately) about the work. And we have lots more ideas about how to take the work forward. Frustratingly we cannot just jump in and get on with the next stage of this work together.

Despite the hard goodbyes, I feel confident about there being opportunities for more collaboration. The fact that other people are as engaged and enthusiastic suggests that further research is warranted. That this cannot be the end of the road. I must go on. I am determined to apply for further funding to continue the work we have started.

But first let me just finish my thesis and submit it and do my viva…..and then we can apply for more funding. NIHR here we come.

 

 

Dementia in our diverse local communities: How can we help?

 

I grew up in London, North London to be precise and have worked across North, East and South London. Oh and I worked in Melbourne, Australia for 5 years. Across all these areas I met people from lots of different communities, cultures and religions. I felt incredibly privileged, and I learnt so much about so many different cultures. For example when I worked in Australia I worked with a Tiananmen Square refugee, a piece of history I knew (ashamedly) little about. I also learnt a lot about how different cultures deal with illness. One example that always springs to mind is the Vietnamese women I met who drank a bottle of bleach. She had schizophrenia. But her family had not allowed her to leave their family home nor use mental health services due to the stigma associated with mental health within their community.

 

When I returned to UK and started working in South London I was rather overwhelmed by the lack of diversity in the people being diagnosed with dementia. The area I worked in had many African and Afro-Caribbean, Indian, South American and Eastern European communities living there. Yet the majority of people who I saw were white, often fairly middle class people. Dementia doesn’t differentiate between ethnicity, nationality and class. Yet I would meet the odd working class family who would say things like “Oh well, we will just get on with things, we have no time for therapy”. I met a lady who was excluded from her church community as it was felt that her dementia was some kind of comeuppance for her sins. I met families who gave up their jobs and cared for the elderly relatives, because dementia was considered a normal part of aging, thus no need to get support from health professionals.

 

It makes so much sense that your experiences, beliefs and community can influence the way you manage your health and health professionals. My father grew up in post war east Germany- in Berlin. When he was 14 he ran away from home and was educated in the west, when he was 18 he went back. They wouldn’t let him leave, he couldn’t get a job and he couldn’t study any more. After a few years he tried to escape again, but unsuccessfully. He got put in prison (for treason), and got bought out by a humanitarian lawyer. My dad became a west German citizen, and eventually moved to the UK where he met my mum and had me and my sisters. A few years ago he got his Stazi file. It made for interesting reading.

 

To put this into context- my dad never trusted health professionals. He rarely sought medical advice. He absconded or self-discharged every hospital admission he ever had. He got multiple opinions from English and German doctors when he was ever diagnosed with anything, and then he often didn’t follow their recommendations. Not that long ago he described a hospital he had an operation in as an antiquated Stazi like regime. My dad never had dementia. But given his experiences, I completely understand why it might be difficult for people to use the National Health Service. I feel quite lucky to have this perspective. To understand why getting a diagnosis, trusting a diagnosis, taking advice from professionals may be difficult for people.

 

I feel it should be part of our role as health professionals, as dementia ambassadors to take this on board. To allow people the freedom of choice to take up advice or not. But to provide an environment that is safe and open, that doesn’t feel like a Stazi regime. Where people can get appropriate support for themselves, their families and their communities. Perhaps we need to rethink the way we deliver dementia services. I attended a talk a little while ago where they described how the re-modeled their dementia services for the farming communities they were serving (who also often don’t trust health professionals) by embedding them into the local churches. And co-delivering the clinics with members of the local church. I considered this innovative and sensitive.

 

So here is my challenge: What can we do to help our communities with dementia?

Prioritsing workloads: No is the hardest word.

When I worked as a clinician I was generally contracted to work a regular day- 9am to 5pm, or 8am to 4.30pm in Australia. That said we generally didn’t actually work these hours. I would say I routinely worked an extra 30-60 minutes at the end of the day. And would answer phone calls and emails on my day off. There is a standard expectation in the profession that communication assessments can take anywhere between 45 and 90 minutes and therapy would generally be around 45-60 minutes. Meal time and swallow assessments could last between 20-60 minutes, depending. But overall you had an idea of how many patients you could fit in each day- in community I aimed to see 4 people each day whilst in outpatients and inpatient rehabilitation I aimed to see 4-8 people a day depending on what was happening e.g. meetings and ward rounds etc.

 

Yet there would always be more (if not lots more) patients on our waiting lists. Staff would ask if I couldn’t just squeeze in a quick review of a patient who could really benefit from my time. Families would ask us if I couldn’t provide some more valuable advice. It would often seem that the people I was working with could benefit from just a few more therapy sessions. In every role I have ever had we had a prioritisation matrices- we developed refined them to meet the needs of the client group we worked with, and based them on evidence. It also meant that there was a fairly transparent understanding of what was expected of us. And that we could be more objective about how to prioritise our workload each day, week and month. It was also a useful way on relieving the emotional burden, which can be rather wearisome.

 

Recently I have wondered if I should create a prioritisation matrix for my academic work! As I really embed myself in trying to finalise the thesis write up I am doing I have found I need to spend large chunks of time writing. Days even. My previous strategies of grabbing time here and there to chip away at various bits of work seem rather like drops in the ocean. I have also found that although I enjoy doing other things e.g. presentations at conferences on the role of the SLT in dementia, and decision-making and mental capacity I need to say no. I can’t spend time working on too many other things as I won’t get this thesis done. Yet having a few other things to work on can be quite useful- almost like a brain detox. But I need to prioritise these ‘other’ things. Perhaps we do need a prioritisation matrix for academic life?

 

Consequently I have decided mine would look a bit like this (today):

 

Priority 1 (should be undertaken every week, every day if possible, preferably in large chunks of uninterrupted time, or small chunks of time chipping away at things):

  • Thesis writing.
  • Thesis editing.
  • Job applications for after my PhD
  • Answering emails

 

Priority 2 (should be undertaken as a detox activity, to maintain contact with colleagues and the broader profession and to maintain sanity. One of two of these activities e.g. presenting on your PhD may even help you write up?????):

  • Presenting my PhD research
  • Doing small jobs that I had committed to ages ago- locally- and for friend/colleagues

 

Priority 3 (you could may be do something from this list IF you have time and they cause no/minimal stress or you REALLLLLLYYYYY LIKE DOING THEM maybe):

  • Any new projects.
  • Presenting things on the role of SLT in dementia or decision-making and mental capacity that do not fall into the above categories.
  • Things that are too far away and too stressful

 

This prioritisation matrix should be reviewed anytime there is a major change e.g. you get a new job / you finish a large chunk of thesis / every month.

 

And the imposter syndrome goes on – diary of a PhD student

 

I must confess that I had this small, idealistic and slightly odd idea that I would get towards the end of my PhD and it would all be different. I would be more sure of myself, in fact I would be certain. In this scenario I imagined my brain would be calm and clear and constantly bathed in a warm glow (like a suntan) of knowing. I would just write my thesis because, you know, I had done the work so I just knew the words. I also envisioned that I would have great ideas, and know they were great, and these ideas would enable me to keep applying for further funding as a post-doc.

 

Well hmmm let’s stand back for a minute and re-evaluate this scenario. In actual fact I am not more sure of myself at all. I have been studying for nearly four wonderful years and am no brainier than previously. I am due to return to part time clinical work and am feeling a little rusty. I have previously taken two lots of maternity leave (in the dim and distant years prior to doing a PhD) and went back to work feeling jittery. I recognise that internal dialogue now; “Is it this time – will they realise I am just an imposter?!” I can deal with this dialogue now. I let it have a moment and then I pop it back in its box. After all, I embarked on this journey into clinical academia because I wanted to find a way to help more people. And I do so love seeing client- I am actually rather excited about being abck.

 

Then there is the thesis. I do actually have to write it. And then two (TWO) examiners are going to read it. I write some stuff, then I re-write it. Then I decide not to look at it any further so as not to risk getting completely bogged down and stuck in the one sentence. Then I am reminded that two people  are going to read it so I do re-read it and some of it is awful (delete) and other bits are pretty good (did I actually write this?). I do so enjoy this writing though. I feel like I am using a muscle I have never previously used, and using it to its full range. It is a great pleasure for me. And one I won’t really get to experience in the same way again. Thus I plan to spend the next few months really reminding myself of how lucky I am.

 

Since I don’t really want this PhD to end, I am also planning to apply for further funding. I have lots of ideas. But I am no more confident in my ideas than prior to embarking on this PhD journey. I do hope to apply for funding to continue the programme of work I am currently doing (a post-doc!!) but only if the results of my current work suggest I should. And I haven’t completely collected the results and analysed them yet. So I’m not sure what they say. In the meantime it’ll be good to have some back up idea right? The lack of certainty is a little disconcerting. There may be a bridge across the abyss to the next pot of funding, or there may not be one. I may need to walk down to the next bridge… so to speak) and that could take some time. But it is so incredibly exciting. I am feeling so lucky to be in this position. What a great opportunity. I have a fair bit of planning to do, but that makes it all the more exciting! The start of another project feels like opening up a brand new book and reading the first page and knowing that you’re going to love it.

 

In my originally imagined scenario I envisioned myself being on top of all my life chores too- paying for bills in advance, getting children’s packed lunches ready without panicking about stale bread and a lack on anything resembling fruit in the fridge. I would be fitter, younger and more adept at life. Just to be clear this is not true. I am older and feel even less organised. But yes it’s true I ammmmm happier for choosing to undertake this PhD. So go away imposter syndrome, take a nap!

The more the merrier: more speechies joining dementia care please!

 

When I posted the wonderful blog written by the SLT, Georgia Bowker-Brady, I was overwhelmed by the response. The twitter discussion on the topic of speech and language therapy for dementia was really valuable. In response a wonderful colleague, a Neuro-psychologist and researcher here at UCL; Dr Aida Suárez-González got in touch with a really inspiring blog she wanted me to share here. A call to arms to all speech and language therapists. Aida is a massive advocate for speech and language therapy and an all round wonderful human being. Thank you for the support Aida- we really appreciate it!

The first SLTs in my life were my friends from the School of Speech and Language at the Universidad Pontificia of Salamanca. I met them in 2003 while studying my masters after completing my undergraduate degree. I spent a lot of time surrounded by SLTs over the next couple of years. I learned about their role in managing voice conditions, dysphagia, dysarthria, administering orofacial myofunctional therapy, supporting kids with learning disabilities and  deafness etcetera. Clinical discussions over dinner, the challenges in teaching and training, the lack of appreciation of SLT in the health care system and related topics filled many conversations over drinks, dinners and Sunday afternoon gatherings. I remember reflecting on how practical their discipline was. I found it very varied and hands-on and was intrigued to see that even recently graduated SLTs were already able to use many techniques, solve many problems and be very useful.

 

Then I qualified and moved to pretty Seville to join the Cognitive Disorders Unit of the Neurology Department at Virgen del Rocio University Hospital as a junior neuropsychologist. I must say that my 9 years there have never been exceeded by any other experience in any other place in which I have worked since. Apart from the exceptionally high clinical services delivered and my overwhelmingly experienced colleagues in the department, I had the opportunity to be completely immersed in a clinical culture that celebrated excellence, mentorship, integrity, knowledge and most importantly: collaboration. For instance in the 90s the team on the Stroke Unit had pioneered the carotid artery stenting in Spain. They did this through a bold collaboration between neurologists, radiologists and nurses. The neurologists in the Cognitive Disorders Unit (my Unit!) really appreciated the role of the neuropsychologist, in spite of being highly knowledgeable and well versed in cognition and neuropsychology themselves (or maybe because of that!). Other allied professionals were also very respected and everybody knew everybody in the hospital, after years of inter-professional collegiality.

 

I was however very surprised when I learned that the SLTs in the hospital refused to see our patients with PPA, either because they did not accept referrals for people with dementia (they were prioritizing people with chronic conditions such as stroke related aphasia) or because those who did accept referrals, did not know how to handle PPA. The neurologists had been trying to refer patients with PPA for years and referrals always bounced back to us. I then learned that in other places the problem was the other way around: there were SLTs eager to help people living with dementia but referrals never arrived, or they arrived only when the person was in the severe stages of the disease, or presenting with swallowing difficulties. Five years ago, I moved to the UK and found that the situation was similar here. The problem in both countries is not only that the role of SLT is not properly understood by many people. The crucial problem is the historically nihilistic and reductionist approach to dementia across our society, which considers that people with degenerative cognitive conditions do not have the same rights as others, and do not deserve the same level of rehabilitation and positive support and investment as people with chronic conditions such as stroke related aphasia. In my mind this is discrimination. it is unfair, unethical and it is a violation of human rights.

 

50 million people are currently living with dementia worldwide. This figure will increase to 82 million in 2030 (11 years from now). And to 115 in 2050 (31 years from now). Some pharmaceutical companies have now simply discontinued the fight to find a cure. Altogether this depicts one of the most challenging global health crises of our time. It is estimated that by 2050 there will be no person in the developed world untouched by dementia, either because they have dementia themselves or have a close relative or friend living with dementia. This is why we need as many hands on deck to join in the work we are doing in the area of dementia care. SLTs have a crucial role to play here. In my 14 years of experience working with people with dementia, I have seen many families shattered by two of the main consequences of the disease: the neuropsychiatric symptoms and the communication breakdown. And SLTs can actually help with the second issue. So, this is a call for action. For SLTs to take a prominent role at the front-line in this challenge, to join forces with the rest of the professionals up here and help to create a world where we can live together with the symptoms of dementia and still be the owners of our own lives.

 

A life working in dementia is a life well spent, a huge legacy for future generations. And you will probably meet very inspiring colleagues, friends, families and patients on your way. I hope more of you will join us on this journey.