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?

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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!