My Mad Dad: Distraction tactics and conversation strategies.

Hollingworth, R. (2018) My Mad Dad. Trapeze; Croydon, UK.

We now know there are more people living with dementia. Many of us have been touched by dementia in our own lives. But most people still don’t understand dementia. And if they see or interact with someone who’s communication is slightly inappropriate or who’s language is somewhat different they are still most likely to judge them as weird, selfish or rude. Dementia can masquerade, can disguise itself as eccentricity, fatigue, old-age; it is a hidden disability. The cognitive and communication difficulties aren’t like a broken leg or a bright red rash. You can’t see them. They are abstract and often intangible and thus difficult to understand.

As a health professional working with people with dementia and their families it can be difficult to support the people we are working with. We may have never been experienced the disease in our loved ones. And if we have, it is difficult to share these experiences when we are taking the role of speech and language therapist, nurse or medic. Yet people search for shared experience and understanding. Meeting other people through support groups can be extremely helpful. But there are very few written accounts of what this is like. This is why I feel the book My Mad Dad is so valuable. This sensitive, heart breaking and hilarious description of living with dementia is a first hand account written by Robyn Hollingworth about living with her father’s progressive illness and her mothers more sudden death. Robyn has published her story based on the diary she kept (age 25)  after moving, from London to Pontypool in regional Wales, to help her parents. The account starts just a few months before her mothers death, when her father has been living with diagnosed dementia for around four years (in his early 60s). It describes Robyn’s initial adjustment from London life (Camden in the naughties) to coping with her father. Her mother is diagnosed with a terminal cancer not long after her return home. The disease progresses quickly and her mother passes away, leaving Robyn and her older brother to care for their father and one another. Their father’s dementia quickly becomes significantly worse,  and he is admitted to a living facility. Robyn compares the deterioration in his health to a broken heart. Throughout the book Robyn intertwines real life events, with examples of detailed conversations between family members, her inner reflections and the narrative of her emotional turmoil.

This book resonated with me as a speech and language therapist, a researcher and a person. Not least that Robyn is exactly the same age as me, and lived in London and around the same time in the same area and my Dad sounds surprisingly similar in personality. But that so much of this book is about communication, what it means, how it is perceived, the value and the complexity. I had a moment where I wanted to do a thematic analysis on the book to extract all these themes properly and scientifically to emphasise this point.

Before I get carried away with a thematic analysis I just wanted to pick out a few bits from the book to really demonstrate the focus on communication and how Robyn eloquently describes the impact:

Robyn uses analogies to give an insight to living with dementia. Speech and language therapists also often find metaphors and analogies useful in discussion with people and their family members. These examples are so helpful in allowing the reader to empathise with the lived experience:

“I heard an analogy the other day; it was on the telly, I think, and a spokesperson compared the early stages of Alzheimer’s disease to a radio that tuned in and out, sometimes working, sometimes very clear and sometimes just fuzzy, completely impossible to decipher or understand.”

[pg 28]

“I sometimes think how it’s a little bit like Dad has been hypnotised- he looks exactly as he did, but really the person you knew has gone.”

[pg 59]

Breaking down the wall of misunderstanding around communication and mental health is so difficult. These barriers impact on daily life, and Robyn highlights both the resulting frustration and anger that can go with this:

“He doesn’t really have much to say, but just talks random shit to strangers, It can get embarrassing. Mum gets upset because people don’t instantly realise there is something wrong with him. You can’t instantly recognise that Dad has a problem because you can’t see mental illness. When you couple this with the negative stigma that most of society attached to mental illness, I can see where her problem lies, and I share her concerns.”

[pg 61]

“If someone tuts at him for standing in their way at the supermarket, I stare them right in the face, with my hand on my hip and my head on a tilt, and say, ‘I’m sorry, can I help you with something?’ How dare anyone hold anger towards someone who is unable to control their actions?”

[113]

One can’t expect people with dementia to recall conversational content, or to obey the usual conversational rules. These rules have been set by our society. But people with dementia don’t use, know or realise all of these rules. The rules are ‘held’ by the listener. When speech and language therapists work on communication we often expect people around the person with the communication difficulty to be able to change their own behaviour just like that. Changing ones own behaviour to accommodate changes in conversation is tricky, fatiguing and confronting at times:

“‘Where’s Mum, love? Has she gone to work already?’

‘What?’ I replied, in disbelief that last night’s chat was stolen from his mind and replaced with a great gaping hole of knowledge.

‘Where is Mum today? Is she is work?’ he repeated.

‘No Dad, she’s in hospital, remember.’

I really need to stop using that last word.”

[pg 78]

“‘Its your birthday today, Dad, remember?’

I hated the way I had started to tag ‘remember’ onto the end of every statement, when talking to Dad- he obviously didn’t and wasn’t going to. This was my problem, not his.”

[pg 82]

Being truthful or honest is another complex area. I have worked with people for whom constant re-orientation to the here and now may be incredibly distressing for all involved. And have little therapeutic value. It is not unusual that we recommend people validate the feelings, and interaction rather than constantly correcting the person. This can be an ethical challenge for many. I have attended numerous discussions with family and staff members where ethics and honesty have been debated in favour of meaning, quality of life and conversation. Robyn describes moving toward this. I am rather glad she addresses this. Often in a humorous way, other times factually. Not shying away from the reality:

“At one point he told me she had been away from a work trip and that the company expected too much of her. I agreed with him.”

[pg 88]

“Gareth drove us home with Dad next t him in the front and me and Mum, in her urn, in the back.

‘What you got there then, love?’ Dad asked. we had agreed best not to tell him and to keep the urn in its box, out of sight.

‘It’s, uh, just…uh,um,shall we go home via the lakes on top of the mountain?’

Distraction tactics – it’s not really lying, right?”

[pg. 159]

In summary I believe this book is going to be important in contributing to people’s understanding of the impact of dementia. In particular Robyn’s descriptions of hidden disability and the frustration that goes with communicating in daily activities will make a hidden disability more visible. I also hope that themes around communication and the dilemmas of identifying how to have a conversation with a loved one with dementia will be useful for readers, speech and language therapists and people with someone with dementia in their lives.

Thus it is also good to know that Robyn’s book has been reviewed by lots of accessible mainstream media:

https://www.metro.news/when-alzheimers-unravelled-her-dads-life-robyn-hollingworths-also-tore-apart/1021752/

https://www.thesun.co.uk/fabulous/6119075/caring-terminally-ill-parents/

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SLT career pathways: My friend wrote a book!

When I was young (around 10 years old) I decided that one day it would be great if I could write a book. I really wanted to write a story, to put pen to paper and know that other people might read my words. As I got older I realised that normal people don’t become book authors (or artists). It doesn’t “pay”. I also realised that lots of people had the same ambition as me, and like me, decided it wasn’t a realistic goal.

So we set about making other career goals- to become speech and language therapists. To get a job. To get a job in an area we felt passionate about. To become a band 6….7…maybe an 8. This career follows a straight forward pathway often toward management. But that really isn’t the only pathway.

Recently my good friend Rhian Grounds, speech and language therapist extraordinaire, wrote a book. She and I studied together at UCL many moons ago. She worked in paediatrics and specialised in autism. She was the first of my friends to get a band 8 role. She managed a large south London trust. She dealt with budgets and performance management.

And now she has collaborated with a mother of a child with autism to write an accessible and useful resource on supporting families with a child with autism at home. The aim of this book is to make ideas accessible and straight forward for parents- to think of practical solutions on managing life in the kitchen, the bedroom, the bathroom, the living room, in daily life. This book is due for release on the 19th of April (end of next week) but has already attracted a fair bit of positive interest and attention.

I feel re-inspired about my profession whenever I hear about friends and colleagues achieving these amazing things- sharing their knowledge and endeavouring to support people with communication difficulties in any way they can. It also reminds me that there are a range of career pathways available for speech and language therapists – including working in the NHS, education, third sector organisations, private practice (both clinically and managerial), writing books, going into research, lecturing, working overseas and many more. I feel the need to spread the word about all the opportunities this career can offer beyond the most obvious. It can be exciting and interesting and you can fulfill those childhood ambitions in all sorts of creative ways.

How it came about: the forthcoming RCSLT MCA pages.

Some of the authors in action.

I am so pleased that the Royal College of Speech and Language Therapy will be putting up some new pages (and a position paper!) on the role of SLT in decision making and mental capacity issues. It’s been quite a journey and the light is shining at the end of the tunnel. Let me start from the beginning:

Two and a bit years ago I submitted the manuscript for my last book on the role of the SLT in decision-making and issues related to the mental capacity act. One of the contributors- an SLT called Mark Jayes was also a fellow PhD NIHR trainee. His PhD focused on capacity and mine on language led dementia, and we both felt that our profession could benefit from more guidance in the area of mental capacity. Thus we contacted RCSLT to find out how to propose a new position paper on the topic.

Firstly we needed to complete and submit an application proposing the new guideline. This needed to evidence the relevance and importance of such a guideline. Once submitted we had a couple of conference calls with the team at RCSLT to discuss when and how to take the issue forward. Consequently a scoping meeting was planned to gain input from a wider group of SLTs and identify the breadth of the project.

The scoping meeting was held at the start of 2017 after RCSLT had advertised for interested parties. At this meeting RCSLT employees proposed the new mental capacity pages. The group agreed these sounded great but all attendees (there were about 10 SLTs from across the UK) felt a position paper essential to enabling clinicians to justify service provision and expansion.

Consequently an advert was published inviting applications for lead and supporting authors. The meetings to start writing the pages began in the summer of 2017. MarkJayes has been acting as lead author- putting together a wonderfully comprehensive and useful set web pages over a series of three meetings and numerous email liaison. The pages follow the RCSLT format but will include information summarising the significant issues relevant to SLTs, discussing the roles of the SLT, explaining key terms, case examples for discussion, providing links to useful articles, books and resources. The pages are being rigorously reviewed by a broader group of SLTs (and some other professionals including a lawyer).

We are now commencing work on the position paper. This doesn’t seem too complex or daunting now the web pages are being finalised. The position paper feels essential to clinical practice. Many SLTs report feeling unsure of their role in this area. These pages are being developed to increase confidence within the profession, demonstrate the breadth of our role and support service development.

The RCSLT web pages will go live (all things being well) in June this year. So watch this space – or perhaps watch the RCSLT website. But I will let you know, as I am rather excited about his project!

Thank goodness for supervision…

I recently read an excellent blog on ‘why supervisions can be hard’ by a former PhD student at Nottingham University. She describes how complex and fraught supervision can be. She starts off by explaining that she had never been asked to sit in front of someone for a full hour and discuss what she thinks. She highlights that the rules for supervision are not explicit before you start, that the relationship with your supervisor is both personal and professional, that you expose yourself during supervision- and its a little scary sometimes (https://patthomson.net/2014/02/20/why-supervisions-can-be-hard/).

 

I started my clinical training as an SLT straight out of school – having just turned 18. And ever since then I have either received some kind of supervision of provided some kind of supervision. I have had individual supervision and peer supervision (in a group). I have been supervised by SLTs, by managers, by nurses, by occupational therapists, by physiotherapists and by psychologists. I have had amazing supervision and not so amazing supervision. I have given supervision to SLTs, nurses, students and psychology assistants. I am sure I haven’t always given great supervision. Long ago, at the very start of my career someone told me that as the supervisee it is up to me to get from supervision what I need. I have also learnt that different people have been able to offer different things in supervision. Some supervisors have offered me clinical ideas, knowledge and problem solving support, others managerial, operational and strategic ideas and others emotional support. With some supervisors I have been able to ask for help with day to day concerns, with others this would not have been appropriate and actually I needed to demonstrate my knowledge and skills in order to gain their confidence in order to push myself or a service forward. Some of these are less tangible but all are useful. And through having so much supervision I have learnt about my own needs and preferences in this area.

 

As I moved from healthcare delivery into academia I breathed a sigh of relief to know that I would still be having supervision. That this supervision was all mine- no sharing it with anyone else, no politicising it, no focus on the broader service I work in. Before I started my PhD I was lucky enough to  a) know my supervisor from my undergraduate degree b) have a period of time immediately before my PhD where we worked together to put my funding application in and consequently developed a working relationship. Putting all these factors together meant that I approached my supervision with a positive outlook. And my supervisor is wonderful. She made some clear recommendations about how frequently supervision would occur, that writing an agenda in advance and writing minutes up afterwards would be useful. And she checks all my minutes! And reminds me of anything I have missed, or clarifies anything I haven’t quite gotten right in them. My supervisor has always been extremely transparent and clear about what she expects from me. Yet puts no pressure on me – I am able to use supervision how I see fit. I write the agenda.

 

That is not to say it is always smooth sailing:

– I confess that I have had some moments of paranoia and panic: “What will my supervisor think about my opinion?”, “What will she say about what I have done?”, “Does she think I am stupid!?”. Putting my opinion out there can be daunting. (Of note this is simply imposter syndrome and will NEVER go away, whether I work as an SLT or as academic).

– I realise how genuinely terrible my knowledge of grammar and punctuation is. But my supervisor and I often laugh the root cause of this: I am a child of the 80s, educated in England, so that’s ok. And I think I am getting better at this with her help….

– Getting feedback on written work can be disheartening. I have found that I need to be much more patient in academia. I used to write and send reports that were ‘good enough’ in order to meet a deadline and get a patient what they needed. In academia the focus must be on the quality of the work- and thus I spend a lot longer than I would perhaps want to trying to perfect written work (articles, protocols, ethics applications, thesis chapters). This is a kind of pleasure-pain for me if I am honest- and perhaps should be more fully explored in an entire other blog post!

 

But these are the exact kind of things that my supervisor is there for. She calls me out when I get something wrong so I don’t make a fool of myself. And she buoys me up when I have a good idea. She is excellent at editing – I mean truly excellent. I am learning SO much from her. And I love to learn. I find the work I produce so satisfying. I am reminded of previous posts where I have compared a PhD to a marathon or to being a parent. It is difficult but so worth it. And my supervisor is my running coach and my conscience. Seriously: thank goodness for supervision!

 

Intertwined: Dementia and decision making capacity.

 

 

https://www.flickr.com/photos/wildrose115/27623264486

 

This week I have mostly been thinking about decision making capacity.

 

Decision making capacity is described as the ability to make a  decision. There is little agreement in the research literature on what the specific cognitive components of making a decision are and how to assess these. To date legislation in this area has provided the only real guidance for health and social care professionals in the form of the mental capacity act 2005 and the accompanying code of practice 2007. In summary the mental capacity act explains that a person may only lack capacity if he or she has an impairment of the brain or mind AND has been assessed as unable to understand, recall, remember and express a decision.

 

This may seem like a major departure from my PhD but it is really intertwined. People with dementia may have difficulties making capacitous decisions. There is a consensus in the research literature  that people with dementia present with progressively less ability in this area as their disease worsens. Yet in the mild to moderate stages they are often able to make decisions. Even in the more severe stages people with dementia may be able to make some decisions if information is presented in a way that they can understand. Understanding is the area where people are most likely to “fail” a capacity assessment. If information is presented visually, using images, context, accessible language and other communication strategies people are often better able to participate. Using these communication strategies is a skill. Speech and language research has demonstrated that communication training can improve the communication of groups of health professionals. Bespoke individualised communication skills training demonstrates improvement in actual conversations. Better conversations with Primary Progressive Aphasia is one such training package.

 

 

People with PPA present with a progressive deterioration in communication skills in the presence of otherwise intact cognitive skills. People with PPA are often able to plan, judge and anticipate their future personal and healthcare needs. They may feel anxious and concerned about participating in future decision-making. They might start planning for this future. Supporting people to plan for the future might include developing communication aids that include information about their future decision making. The people around that person may also wish to support them. Supporting people who may end up becoming defacto decision makers (should the person no longer have decision making capacity in relation to a specific decision and have appointed a power of attorney) may include provision of communication training to ensure they are best able to ascertain the persons will and preferences in a specific situation.

 

So decision making capacity is not a big departure from my work- it is intertwined and integral in the work I do with people with dementia and their families. The forthcoming NICE SCIE guidelines on decision making and mental capacity will provide further support and guidance for us in our daily practice. This is an exciting step – and another part of the conversation.

Girl Power: The origins of Chandler House, UCL.

The entrance to the London Royal Free Hospital School of Medicine for Women.

Speech and language therapists are overwhelmingly female. Don’t ask me why- but I graduated from my training (at UCL) with nearly 40 other women. The building I studied in was and is called Chandler House. And speech and language therapists (SLTs) still train and study here. As do the SLT PhD students. I recently found out the origins of our modest, by UCL standards, building. And it’s quite inspiring. The building was built for a formidable women named Elizabeth Garrett-Anderson. She was by all accounts a determined and passionate person – keen to study medicine at a time when people like Henry Maudsley (famous for improving the standard of mental healthcare) stated that women, such as Elizabeth, should not be educated too much as their feeble minds wouldn’t handle it and they would all be driven to hysteria.

 

Although women could not study medicine Elizabeth nevertheless  attended all the medical lectures and, tired of having her thrown out, she was allowed to stay. Eventually having completed all the required teaching Elizabeth was the first women to qualify as a doctor in Britain in 1865 when she passed the Society of Apothecaries exam- they promptly forbade further women from taking these exams. But it was not until 1873 that she became the first female member of the British Medical Association.

 

Chandler House was a consequent development of her successful medical career. In 1874 Elizabeth co-founded the first school of medicine to train women; The London School of Medicine for Women. They occupied a large house around the corner from where Chandler House stands. By 1897 the school had become too big (170 students) and Elizabeth employed her friend and architect JM Brydon to rebuild the building where it currently stands between Wakefield street, Handel street and Hunter street. As dean of the school Elizabeth saw the school join the London University in 1883 and later the Royal Free School of Medicine – part of UCL. Building work on the school finished in 1897/1899.

A decorative stone from outside the building- I haven’t found much evidence of what these symbols mean. My guess is the G stands for Garrett, the B for Brydon (the architect) and the S for Sophia Jex-Blake who co-founded the medical school with Garrett.

The school lives by the love and labour of those who serve her

The ceiling rose.

Elizabeth created a place for people, for women, to love learning. The building has now been divided, and hosts not only part of the UCL department I work in, but also a GP surgery and a Health Centre. Our part of the building previously housed the laboratories and taught chemistry, physiology, anatomy and physics! The building has been praised for its excellent examples of handsome Queen Anne style architecture and there are certainly some lovely features. There is an old board room with rather important wooden paneling, a fantastical ceiling rose and an arch in the hallway reminding us to love learning to keep the school alive.

 

Elizabeth Garrett-Anderson came from moderately humble beginnings – her father was an entrepreneur who set up and expanded his malting business in Aldeburgh. Elizabeth was the second of eight children. She and her sisters were educated initially at home and then at a boarding school. Her father supported her in her endeavours to become a medical doctor, both financially and otherwise. Yet Elizabeth was not the only impressive Garrett sister. Millicent Garrett was an influential member of the British Women’s Suffrage Committee.

 

It was only recently that I was part of a twitter discussion (a mini storm) on our role as clinical academics. We all agreed we must advocate and fight for this career pathway. We must push for equal opportunities alongside medical professionals. Elizabeth is an inspiring story of what a women can achieve in mans world. I imagine she would approve of our mission  and would support us in our ventures.

About Elizabeth:

https://en.wikipedia.org/wiki/Elizabeth_Garrett_Anderson

https://london.ac.uk/elizabeth-garrett-anderson

About Chandler House:

https://historicengland.org.uk/listing/the-list/list-entry/1379142

I should be writing………….

The main focus of my day to day working life at present is basically writing. Writing thesis chapters (where I feel completely out of my depth), draft articles (that will be rejected and need re-writing) and book chapters (that no-one will read). Writing is, however, interspersed with lots of other things. In fact other things make such frequent appearances that I often find it difficult to get on with writing. Other things manage to raise their heads, wave their hands and emphasise that they are far more important in that moment than writing. This consequently distracts me (often appropriately) from the task at hand and draws me in to an abyss of doing other things.

 

Now I know it is not unusual to feel disheartened by the writing process. I recognise that getting distracted is also rather common. The best tip I have been given is to just get on with it- shut up and write! This is a writing approach that has been described in detail by academics, creative writers and journalists. There are even blogs dedicated to this approach: https://thesiswhisperer.com/shut-up-and-write/. My own approach is far more literal. It requires me just to sit down and write whenever I have ANY time at all- it means I can get 45-60 minutes of writing in after I put the kids to bed, before my husband gets home from work (having anticipated this and prepared enough dinner the night before that there are leftovers for an entire week), it means I write in the car whilst the kids are doing their various extra-curricular activities (no chatting with other parents), it means I de-prioritise household chores (I love this bit), it means I don’t chat all day with my work colleagues either (only half a day).

Looking for tips on how to write can become a distraction unto itself. I recently went to a workshop on writing in our department where a number of suggestions and recommendations were made. So, in the spirit of distracting myself with important stuff I thought it might be useful to share a few of them here:

 

  • PhD students should aim to publish one or two journal articles prior to their vivas; feedback from reviewers an be incredibly useful and give you lots of insights to the kinds of questions an examiner might ask i.e. it is great revision!
  • Looking to the future: New lecturers should aim for 1-6 over census period (2 first author papers per year).
  • There is no recipe to writing
  • Write regularly
  • Schedule time to write and defend it!
  • Write down your writing goals (fold a piece of paper into 12 squares- one for each month of the year, write down your other main deadlines etc, then insert your specific writing aims into each month)
  • Balance the number of reviews you do with the number of papers you write
  • Prioritise 1. proofs and editing, 2. hard deadlines (grant applications/grant reports), 3. revising reviewer comments, 4. first author manuscripts, 5. stuff for other people, 6. blogs
  • Use a spread-sheet to set goals and monitor progress every day (enter the days of the week in one column, your word count goal in another, your actual word count in another, add up total word counts as you progress)
  • Top tips: Get off-line, be regular, take short sprints, write anything as long as its work, do it together