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.

Is SLT for people with dementia a lost cause? Absolutely NOT.

Over the next few weeks this blog will be giving voice to speech and language therapists other than myself, who have things to say on dementia. Georgia Bowker-Brady is a speech and language therapist, working on the Better Conversations with PPA (BCPPA) project as a local collaborator. Georgia has written a really insightful blog into the everyday challenges that clinicians face when working in this area, but highlights why it is really worth it:

Working as a speech and language therapist with people with dementia is a role that I find highly rewarding. Yet when I tell others about my job “Aren’t they a lost cause?”-type sentiments (framed more politely) often ensue. Of course like any role it can have its challenges but I also think there are many positives.

 

So I thought I’d have a go at briefly outlining my take on some of the highlights and difficulties when working with people with dementia as a speech and language therapist:

 

Speech and language therapists aren’t exactly rolling in randomised controlled trials right now, most likely due to several factors including the relative youth of our profession, the lack of homogeneity of client groups and the complexity of “communication” as a process. When working in dementia care this paucity of evidence-base can feel even more exaggerated.

The evidence base is, however, slowly growing and we do have an increasing number of studies that show that intervention can be effective even in moderate and severe stages of dementia (Swan et al, 2018). Two evidence-based principles that I often find helpful to use in conjunction with other approaches are spaced retrieval and errorless learning (Jang et al, 2015; Jokel & Anderson, 2012; Oren et al, 2014;). I find them pertinent when, for example, introducing communication aids, or for the re-learning/retention of single words.

I recently got involved with Anna’s Better Conversations with Primary Progressive Aphasia (BCPPA) pilot study and thoroughly enjoyed carrying out the therapy with one of my patients and her conversation partner. They had positive outcomes and I found it a valuable experience both in terms of being involved in the study and in further considering the role of videoing in conversation partner training. Although there’s still a way to go, dementia research is finally moving in the right direction on the national and international agenda. Even if you don’t fancy heading up a research project, I would really encourage you to get involved with chances to contribute to research that’s happening if you can. For me, this is another plus to the job.

The progressive nature of dementia presents certain considerations for goal-planning and intervention, and whilst some patients may be able to benefit from impairment-based therapies, we’re never quite sure how long the benefits might be sustained. Additionally, the cognitive changes experienced by someone with dementia can affect the way they engage in speech and language therapy. During our clinical training, cognition and language were often neatly separated out, but of course the reality is that they are inherently entwined. For people with dementia difficulties with memory, attention, executive function etc can impact on their ability to engage in therapy or to take on board compensatory strategies. There can also be challenges associated with the person possibly lacking insight into their difficulties.

The flipside is, that to work around these obstacles we take a more pragmatic and holistic way. Perhaps our lack of evidence base gives us more licence for creativity to do this, and the motivation to be truly person-centred. In my experience it’s vital to work closely with families, carers and the wider multi-disciplinary team which again contributes to increasing participation and a supportive communicative environment. Whilst gains from impairment-based work may not be long-term, I’ve had feedback from patients that actually just realising they can improve at something with a diagnosis of dementia is a powerful discovery.

As we’re all keenly aware, service provision across the country varies enormously. Due to the current pressures, teams have to ring-fence their remit carefully and at times it’s people with dementia that lose out. For example, some services have criteria which will only include people with dementia for dysphagia but not for communication. I’m not sure why services that support adults with acquired communication difficulties single out dementia as a diagnosis for exclusion. The patients that slip through the net are not getting the support they need. This can feel frustrating, disheartening and unfair. I’m sure we’re all doing our best to advocate for these patients and highlight our concerns to the relevant personnel.

My final point, but one of the most important about why I love my job is that through my work I have met some fascinating, kind and wonderful patients who have a tapestry of stories to share. They have often offered life advice and pearls of wisdom that people would pay good money for! One couple recently told me the secret to their 50 year marriage – “Always lift the other person up. Be the one that believes in them and tell them you love them every day.”

 

So those are my thoughts – in actual fact, I think many of those challenges would be similar across several adult acquired patient groups. All in all for me, I am certain the highlights far outweigh the challenges.

 

References

  1. Jang, J. S., Lee, J. S., & Yoo, D. H. (2015). Effects of spaced retrieval training with errorless learning in the rehabilitation of patients with dementia. Journal of physical therapy science, 27(9), 2735–2738. doi:10.1589/jpts.27.2735
  2. Jokel, R. & Anderson, N.D. (2012) Quest for the best: effects of errorless and active encoding on word re-learning in semantic dementia. Neuropsychological Rehabilitation, 22(2): 187-214.
  3. Oren, S., Willerton, C., & Small, J. (2014) The effects of spaced retrieval training on semantic memory in Alzheimer’s Disease. Journal of Speech-Language and Hearing Research, 57(1):247-70.
  4. Swan, K., Hopper, M., Wenke, R., Jackson, C., Till, T. & Conway, E. (2018). Speech-Language Pathologist Interventions for Communication in Moderate-Severe Dementia: A Systematic Review. American Journal of Speech-Language Pathology, 19:1-17.

 

Blogging the evidence: Summarising my systematic review of functional communication interventions for PPA

I have just published my most recent article from my PhD thesis. So, I thought it best to write a brief blog- a taster if you like – providing an overview of the article itself. The article describes the work I did on a systematic review of functional communication interventions:

Volkmer, A., Spector, A., Meitanis, V., Warren, J. D., & Beeke, S. (2019). Effects of functional communication interventions for people with primary progressive aphasia and their caregivers: a systematic review. Aging & mental health, 1-13.

People with Primary Progressive Aphasia (a language led dementia) experience a variety of difficulties with language such as difficulties in understanding word meanings, difficulties thinking of words, difficulties finding the sounds to articulate the words and difficulties in understanding and using sentences. Yet there is relatively little research on management of these speech and language symptoms. Of the literature available, the majority focuses on impairment based approaches such as word relearning interventions. Yet speech and language therapists working in clinical settings across the UK report that they prioritise more functional communication interventions when working with people with PPA. Given this lack of focus on functional communication interventions in the research literature to date this study sought to answer the following questions:

  1. What are the current functional communication interventions for people with PPA and their caregivers?
  2. What is the effectiveness of these interventions?
  3. What are the key intervention components?

We conducted a systematic search of 8 databases, the grey literature and trials databases from 1998 to 2018 to identify all study designs containing empirical data on functional communication focused interventions for people with PPA and their caregivers. Data was then extracted using the ITAX adaptation (O’Rourke et al, 2018). The ITAX adaptation is based on an intervention taxonomy that allows for comparison of standard protocol items that should be reported in intervention trials.  This allowed for comparison of delivery characteristics such as mode, method of contact, materials, location, duration and scripting components. Study outcomes were also compared across the studies

We identified 19 studies, comprising 11 case studies, one case series, one pilot intervention trial, five intervention trials (no control) and one controlled intervention trial. This represents an increase in the number of functional communication interventions studies when compared to previous reviews.

Key findings from the review highlight that including communication partners in the intervention and focusing on skill building techniques – developing the person’s strengths, may be particularly useful methods of supporting maximal generalisation of anything learned in therapy. It is more difficulties to identify any additional conclusions as there was such variability in terms of components such as delivery location and dosage, and these may be much more dependent on the individual’s needs.

Across all 19 studies, 42 different outcome measures were used. Only two studies used the same measure, designed by the authors (the same authors of both studies). This meant that study outcomes were incomparable. Of these outcomes, 19 provided statistical data on significance – 17 of which demonstrated a significant improvement across 8 different studies. The key implication is the need for a set of core outcome measures, used across the research field to allow for cross-study comparison.

Conclusions:

Building on existing strategies and practising these with a communication partner have been identified as key components of functional communication focused interventions for people with PPA and their caregivers. We need more research, using more robust research methods and common outcome measures (such as those that focus on self-efficacy and quality of life) in order to fully understand the effectiveness of functional communication focused interventions.

 

To read the full article please go to: https://www.tandfonline.com/doi/full/10.1080/13607863.2019.1617246

Doing research with people with dementia: What actually happens in the interview?

 

Talking to people with dementia can be hard work. As a health professional I have often used numerous creative strategies to do this, borrowed from my knowledge of working with people with aphasia post stroke, or cognitive communication difficulties post brain injury. These strategies can include modifying the environment (quiet is generally better- therefore off the ward, no TV, no visual distractions either), considering the time of day (depends on the person when they are at their best), modifying my communication (using pictures can help or hinder, modifying language to be simpler is not always effective) and considering carefully what else might help (do friends/carers/family help or not). This can really very effective ways of interacting.

When doing research with people with dementia communication strategies can also support participation. I have been running focus groups with people with Primary Progressive Aphasia, and more recently people with Alzheimer’s dementia. The strategies that we needed to employ to support people to participate were overlapping but different. Some of the commonalities included environmental factors, such as the way the chairs were set, the number of participants we invited, the pace of the activities. Some strategies needed to be specific to the individuals involved. One person I worked with used gesture to convey meaning, and I needed to use more clarification to ensure I had interpreted her correctly. Another person I worked with needed frequent re-orientation to the task and where his partner was, whilst also participating in some discussion.

That said, it can be very easy to use more leading or biased language when one tries to break things down and make them more accessible for the listener. We are supposed to use the least bias possible, and present information in a balanced way. Unless we carefully consider the way we use pitch, tone, and gesture alongside vocabulary we can easily biased people without even realising it. I was recently speaking with another SLT, Sarah Griffiths who has recently blogged on this topic for the dementia researcher website. Sarah is a former senior lecturer at Marjon University and currently a research fellow at Plymouth University. We were discussing how we do research with people with dementia, how we engage them in a conversation or interview, but don’t bias them and whether this is even possible. The more I think about this, the more I am not sure we can’t avoid some bias. But perhaps by being mindful of context and language, by using multiple choices and acknowledging bias this can help.

Sarah put me onto a great blog by Jemima Dooley, she cites the work done by a group of researchers with dementia called the Forget-Me-Nots who are coming up with tips and hints on how to support people with dementia to tell their stories in a research context. Jemima discusses the idea of using photos, taken by the research participants, which then support discussion points in interviews. I have used this approach, successfully in therapy, and PPI work. I have yet to see it work in research activities specifically. I am planning to use it in some work I doing shortly. But again I am not sure that this is without bias, and interpretation.

I have though quite a bit about this, and I have actually been pondering whether, as long as we use all these strategies to maximise participation, should we actually be focusing more on how we are interpreting the data? Do we need to be mindful of getting assurance from the people themselves, their families or other people with dementia, that we are interpreting the data correctly? Would this support our methodology too? Can we do this with people with dementia?

Food for thought!

 

Guest SLT blog: ‘Chatting Matters’ – Positive collaboration for communication difficulties in Dementia

Over the last few years I have been interacting more and more with speech and language therapists, working in the field of dementia, who are providing innovative services to people with dementia. Caroline and her colleagues told me all about the wonderful Chatting Matters group they set up, and I asked them to write about it for me. The following provides a really inspiring account of the work they did to set it up.

Authors: Caroline De Lamo White and Rachel McMurray are speech and language therapists in Leicester Partnerships NHS Trust, and Nicola Lawtie was the speech and language therapy lecturer at De Montfort University.

Introduction:

There is currently variable provision of communication intervention for people with dementia (PWD) in the UK (Volkmer et al, 2018). Many clinicians report that the greatest proportion of PWD being seen are at the later stages of the disease for assessment and management of dysphagia.  Progressive loss of language can be frustrating and traumatic for the person with dementia and affects their identity and relationships (Bryden, 2005). Communication difficulty has also been described as one of the most frequent and hardest to cope with experiences for family carers (Braun et al, 2010) and can negatively impact carers’ emotional and physical health (Gallagher-Thompson et al, 2012).

To address this area of unmet need in our service we decided to offer a community-based intervention to focus on communication breakdown in Dementia to support both the PWD and their main carer. There was a risk of being overwhelmed by a large number of referrals so we decided to undertake a small scale pilot study using the ‘plan, do, study act’ cycle advocated by the NHS Improvement (NHSI). We came up with several ideas but decided on running a communication support group for people with dementia and their carers. ‘Chatting Matters’ was born.

Aims of Chatting Matters:

  • To explore the value and scope of community-based Speech and Language Therapists (SLT) working with clients with communication difficulties secondary to dementia to inform future possible service developments for PWD.
  • To provide carers with practical strategies and tips to improve communication at home; thereby reducing carer strain and frustration.
  • To increase people with dementia’s sense of well-being and facilitate increased positive engagement in social interaction.
  • To work collaboratively with De Montfort University SLT course to develop innovative placement models to support the students learning and support the running of the groups.

 

We established new links with the local community mental health team who were able to provide a manageable quantity of referrals within an agreed time frame. This enabled us to undertake the study alongside existing caseloads without being overwhelmed. Referral criteria was kept fairly broad for the initial group however referrers were asked to consider couples for whom communication was a significant challenge at home, and who would be willing to attend a group.  Referrals were triaged by two qualified SLTs in the clients own home. One therapist explored the carer’s perceptions, insights and experience of their partner’s communication difficulties. The other clinician spent time informally assessing the communication abilities of the person with dementia in order to ascertain the severity and nature of their impairment.  Clients presented with a variety of conditions including early onset Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and fronto-temporal dementia and had a varying levels of communication impairment within the mild to moderate range.

 

 

Format:

We ran a six week conversation group for the clients, alongside a support group for their carers.  There were eight participants in each group.  We worked in collaboration with undergraduate placement students from De Montfort University as a way to fully resource and support the running of the two groups. This service model would have been very difficult to run with just the SLT’s and this innovative placement opportunity provided a valuable and insightful learning experience for the students. The students were supported to run the client group and encouraged to think about a variety of multi-sensory activities which would stimulate memory, communication and promote positive person-centred interactions in order to enhance well-being. Research suggests positive changes to well-being and communication are achieved through cognitive stimulation as well as improvements in cognition therefore therapy tasks included elements of reminiscence therapy, total communication and aspects of cognitive stimulation therapy (Spector et al, 2013).

The SLT’s concurrently ran the carers group providing knowledge, strategies, advice and support around interaction and communication with PWD. There was also an opportunity for carers to share experiences together.

 Outcomes:

A variety of assessment tools were used to capture outcomes but personal narrative was found to be the most powerful and specific. Quantitative measures were found to be less sensitive to change. Carers were reluctant to “give it a number” and whilst the focus of many SLT tools is to measure language skills, for the clients the aim was to improve well-being and engagement. The comments given by clients, carers and students are captured in the table below and categorised by theme.

Participants

 

 Outcomes Comments
Clients with dementia Improved sense of well-being

 

 

Increased engagement in activities of daily living

 

 

 

Reduced sense of isolation

“Oh I have enjoyed it, yes!”

D- person with dementia

 

“The group lifted my spirits. I used to just watch TV and now I get dressed and go out”

I – person with dementia

 

“I felt abandoned after diagnosis. I don’t feel so alone. I’ve really enjoyed [the conversation group].”

V – person with dementia

 

 

 

Carers Increased level of insight into the importance of well-being in self and others.

 

 

Observing a tangible increase in levels of engagement in a supportive environment.

 

 

 

 

Increased carer resilience

 

 

Improved knowledge, understanding and acceptance of the condition and its affects.

 

 

 

 

 

Change of approach and increased insight into the applicability of communication strategies.

 

“[The group] made me realise that well-being applies to us all. It made me think about how to

bring the best out in K ”

 

“S looked forward to the group each week and I found that when he was in the session he really came ‘out of his shell’; initiating conversation with others and making jokes.”

 

“I’m coping much better than I did [before the group]”

 

“[The group] has helped me accept [my husband’s diagnosis of dementia]. I was feeling very anxious at times before the group. This has reduced.”

 

 

 

“ I have learnt the importance of patience with communication”

 

“Not everything has been relevant to my specific circumstances but there are bits to take away.”

Placement Students Developing a therapeutic relationship

 

Continuity of care

 

Witnessing positive change within a short time frame

 

Experience of intervention planning for people with dementia

 

Running a group

 

Working independently

 

Developing workforce

“For much of the rest of my adult placement I was doing assessments/reviews, it was really good to see clients over 6 weeks, build relationships and see that the clients were both benefitting and enjoying it”

 

“I learned about Dementia and its impact and could see that the couples really needed this”

 

“I knew that it would not have been possible to resource this group without students which made us feel we were really making a difference”

 

“I enjoyed the independence of planning and running the groups with my peers but with support. It gave me confidence and helped me really develop my skills”

 

Reflections and Outcomes on Speech and Language Therapy Provision:

We were able to offer earlier intervention to PWD and address a currently under-resourced area of need, which may prevent crisis further down the line. We were able to work with conversation partners / carers to develop strategies to support interaction, as recommended by NICE, 2018. We were able to establish a model for future service provision with potential for replication around the country. Collaboration with De Montfort University and use of undergraduate students enabled us to run groups without engaging additional staff from the department. We were able to use students as part of the workforce and provide them with an innovative placement where they were able to facilitate real positive change over a short space of time and develop important SLT knowledge and skills for their future careers.

Future:

The plan is to re-run the groups with implemented changes based on reflections from the pilot. We hope to use a wider variety of outcome measures to capture and evidence the positive changes that participants reported. The benefits of collaboration with DMU have been key to the success of running the pilot which is paramount in a climate of reducing resources.

References:

Braun M, et al (2010) Toward a Better Understanding of Psychological Well‐Being in Dementia Caregivers: The Link Between Marital Communication and Depression. Family Process. 49 (2) 185-203

Brydan, C. (2005) Dancing with Dementia. London. Jessica Kingsley Publishers.

Gallagher-Thompson D et al. (2012) International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review. Clinical Gerontologist, 35. pp 316-355.

Spector A, et al (2003) Efficacy for an Evidenced Based Cognitive Stimulation Programme for People With Dementia: Randomised Control Trial. British Journal of Psychiatry. 183 pp.248-254

Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018). Speech and language therapy for primary progressive aphasia: referral patterns and barriers to service provision across the UK. Dementia, 1471301218797240.

All practicable steps: The forthcoming Mental Capacity CEN for SLTs

Many moons ago (five years to be more precise) I attended a study day for a group of speech and language therapists with a special interest in acquired neurological conditions. The theme of the day was the Mental Capacity Act and its relevance to the profession. It was such an interesting day, and I made connections with people with similar interest in this fascinating and important area and with whom I have maintained contact with ever since. Yet the discussions on this day were rather split. Many therapists at the event took the view that SLTs should not be advertising themselves as willing to assess people’s decision making capacity for fear of being flooded with an overwhelming number of referrals that we wouldn’t know how to cope with. Others felt quite the opposite, suggesting that supporting decision making and issues related to this should be part of our core business.

Since then, work around the implementation of the Mental Capacity Act in health and social care settings, the NICE guidelines and RCSLT guidance for example, has made it clear that all professionals need to understand the basic principles of the Mental Capacity Act. All professionals need to be aware that a person with an impairment of mind or brain may have difficulties in decision making and that should there be any evidence of this then an assessment of decision-making capacity may need to be undertaken. This assessment should only be undertaken if all reasonable steps to support decision making have been taken. And if they have been shown to lack capacity then a decision may be made in their best interests, depending on the decision at hand.

So what are speech and language therapists doing in clinical practice? There has been some data collected on the practices – a survey of SLTs across the UK was published last year (McCormick, Bose & Marinis, 2017, Aphasiology, 31(11), 1344-1358). This has collated some information on the roles that SLTs are taking (sometimes being assessor and decision-maker but often not being utilised perhaps because others don’t know about the breadth of our role) and the training that they are delivering to other professionals (mostly to allied health). That said there has been lots of innovative work done, and lots of work that needs to be done to develop practice further. Some SLTs are even specialising in Mental Capacity work both within and outside the NHS.

But a number of SLTs felt they needed a bit more support- from within the profession. A tweet set out by @jothespeechie illustrated that there was a lot of interest in such a group (over 100 people responded to this tweet). Amongst other things responses highlighted that SLTs would like:

  • To share practice from across the discipline
  • To share resources within the discipline and beyond
  • To spread the word about our role to other disciplines
  • To develop assessment practices and processes
  • To refine and define the role of the SLT in relation to mental capacity
  • To consider training- of new graduates and undergraduates in this area
  • To get regular updates on legislation and policy development
  • To influence research priorities in this area

And yesterday a group of SLTs gathered at UCL to put their minds together to get something off the ground. The team put together an application for RCSLT for the aptly named Mental Capacity CEN. We assigned a Chair (our fearless leader @jothespeechie), treasurer, secretary, membership secretary, social media secretary and study day organisers. We planned methods of disseminating information- look out for our forthcoming twitter handler, WordPress site, Instagram and Facebook pages. We have even started thinking about our forthcoming study days and have a list of ideas for potential presentations from existing committee members as well as individuals external to the group. We would like to host workshops and discussions. We are even planning to put together some work that might be published in the Bulletin magazine to disseminate anything we develop such as competencies or resources.

On a personal note I feel that the energy in the meeting was super exciting. It is important for us to have a voice in issues related to decision making and mental capacity. The legislation describes the functional test of decision making in relation to four domains- understanding, expression, retention and weighing up a decision. As a profession we have been studying at least 50% (more in many ways) for many many decades. We understand the subtleties of language and communication (even with individuals without communication difficulties) better than many. We are able to modify language to plan, accessible and inclusive communication. We can detect bias and inference. I feel that this is just the beginning of what we might be able to do for the people we serve (our patients) as well as for our colleagues!

So keep watch – we will be advertising our study days soon!