“I will forget today, but that doesn’t mean today doesn’t matter”

The week before Christmas I had the privilege of being interviewed on Premier Radio about dementia and encouraging those who are looking after loved ones with dementia over the Christmas period.

You can read the full transcript below, and also listen online here (the interview starts after 9m40s).

There is much more that could have been said so here I summarize, and expand, in 3 key points. I hope you may find them helpful and encouraging as we enter into the New Year.

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sweden beauty lake river trees - Dementia Care Research

Dementia Summer School in Sweden #demsum

Sweden. A beautiful land of trees, lakes, more trees and more lakes.

The country is also home to at least two internationally-renowned ‘centres of excellence in dementia research’, in Linköping University and the Karolinska Institute, and it is the land which I was honored to visit last week!

The Alzheimer’s Society and NIHR provided funding for an amazing opportunity for Dementia PhD Researchers around the UK and Sweden to get together to learn, network and be inspired. I am privileged to have been a part of it!

So, apart from taking away a selection of Swedish vocabulary, exploring the beautiful city of Norrköping, and enjoying a stunning train journey from Stockholm to Norrköping at sunset, here are my reflections on a fantastic few days:

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Valuing the whole person – The Enriched Model

Last June I wrote a blog post about changing the world through my PhD. I still believe my research is an important step to making change to wider practice, and to getting a job in which I can influence positive change.

But changing the world doesn’t have to be such large scale! We can change another person’s world just by treating them as a person!

So how can we treat our patients more like people? We start by looking beyond the task we’re performing to the person we are with.

Personhood

Tom Kitwood understood this idea well, calling it Personhood; “it implies recognition, respect and trust” (Kitwood, 1997).

Personhood can be massively undermined when people are not considered according to their individual needs. By treating the people in our care as patients and tasks, we can easily lose the recognition, respect and trust we all deserve.

The real challenge is how we put this into practice. Kitwood came up with a model to help us think outside the “task” and the “patient” and give more positive experiences to the people we are caring for .

The Enriched Model

1. Neurological Impairment

This includes the decline of cognitive abilities that comes with dementia – memory loss, slower processing, language difficulties, loss of abstract thinking, reduced planning and sequencing, behaviour, and more!

2. Health and Physical Well-being

A person with dementia may also have other illness, temporary or long standing, which will impact their functional ability and how they are experiencing their time in our care. These may include pain, sensory impairments, chest infections, UTIs, wounds or trauma, pressure ulcers, long term conditions (diabetes/blood pressure or heart conditions), and mental state.

It’s so important to know if the person you are caring for has more than a dementia diagnosis – how else will you be able to understand how they may be feeling?

3 & 4. Life History and Personality

A key way in which we make sense of the ‘here and now’ is through reference to past experience. This doesn’t change for somebody with dementia.

It’s so important to learn about their past relationships, occupation, hobbies and experiences for 2 main reasons:

  1. It builds our respect for them, enhancing their personhood, and,
  2. It gives us an idea of how they might perceive a current situation.

Talk to them, talk to their family, use the “This is Me” or “Life History” documents to try and find out about the person under your care.

5. Social Psychology

People and their experiences are moulded by their sense of self, relationships, interactions and the environment. Our relationship and interactions with the people we are caring for have the potential to be extremely positive or extremely damaging.

Considering the whole picture and knowing the person will make all the difference to our relationships and the way we interact with them.

“Personhood implies recognition, respect and trust”

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So, how do we treat our patients more like people? In the same ways we do with other people! We get to know them, respect them, recognise them as a person and we trust them. We do all we can to enable the abilities they hold, and we interact in positive ways when assisting them with the abilities they have lost.

A person is more than their dementia diagnosis. Lets keep hold of who they are and ensure their care is the best we can provide!

A person is more than their dementia diagnosis.

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Understanding Eating in Dementia – more than just memory loss

Long ago… back in the year 2015… I completed the University of Tasmania’s ‘Understanding Dementia Massive Open Online Course (MOOC)’ – something I would highly recommend to anyone from any walk of life who has an interest in dementia or dementia care.

Particularly impressed by Dr Jane Tolman’s presentation on the different domains of dementia, I felt it was something everyone should be familiar with!

I immediately started to apply her teaching to why people with dementia may have difficulty eating and drinking. Also inspired by Hilda Hayo (Chief Admiral Nurse), here are a few key ideas:

The 5 domains:

  • Cognition
  • Psychiatric
  • Physical
  • Behaviour
  • Function

This may come as a shock for some – dementia is just a memory problem, right? Wrong! Dementia is a neurodegenerative disease of the brain; sadly when your nervous system is under attack, more than your memory will be effected.

So why is eating a problem?

Cognition

I’ve said it before – eating is a complex cognitive activity. Yes, to eat you need memory! Memory and awareness of the time, such as when you last ate etc. However, you also need initiation, planning, object recognition, environment recognition, judgement, concentration, attention, understanding and much more.

People with dementia often lose these abilities, meaning: they may not start eating a meal when it is put in front of them; they may forget what they are doing half way through; they may leave the table during the meal; they may not recognise you are giving them food or even that they are hungry; they may not know how to use the cutlery or bring the food to their mouth.

Psychiatric

This is an interesting one; mental health is not always associated with dementia, but people living with it can experience hallucinations, delusions and depression.

One possible outworking of this – if food is believed to have been poisoned, it probably won’t be eaten.

Hallucinations can include olfactory (smell), visual and tactile (feeling). Imagine if your food had a strange smell or tasted vile, imagine if you could see something unpleasant on it.
It’s unlikely it would be eaten.

Have any of you ever felt depressed and lost your appetite? Enough said.

To eat you don’t just use your brain, you need your body

Physical

Probably the most common physical problem in eating and drinking for people with dementia is swallowing difficulties – it’s certainly a good job we have fantastic Speech and Language Therapists, Nurses and Dietitians to help tackle that one!

Also, losing the physical ability to pick up food with cutlery can be a major issue – thanks again are due for the brilliant multi-disciplinary teams we have working on solutions!

The physical environment can also impact eating and drinking – it may be over-stimulating – causing distraction – or under-stimulating – enhancing depression or reducing the chance of the act of eating being initiated.

Function and Behaviour

I think by now we’re getting the idea – dementia is more than just memory loss.

Loss of cognitive and physical capacity will undoubtedly impact the ability to function.

People may think people with dementia are being “naughty” or “manipulative” but the truth is very different.

Confusion, fear and the psychiatric effects of dementia can have understandable impacts on behaviour. After all, if you were in an unknown environment feeling alone, depressed, confused, and suspicious, how would you behave? Especially if somebody tried putting food in your mouth and you didn’t know what it was or how to say ‘no’!

Another point highlighted by Dr Jane Tolman is the loss of social understanding in dementia – losing the ability to know what is socially acceptable and the lack of judgement or ability to reason will also understandably lead to certain behaviours.

Dementia is more than just memory loss

I hope this little insight has been useful in helping you understand more about dementia and why people with dementia may not eat as much as they need.

I’m excited about seeing how all this applies in acute hospital wards and what more I may find out through my study… keep connected with me to find out!

Reflections on the 10th UK Dementia Congress

Last Tuesday morning I excitedly boarded the train to begin my journey to the 10th UK Dementia Congress in Telford. I was looking forward to diving into the Dementia world, meeting new people as well as those I have connected with on Twitter. The programme looked fantastic and it was the first residential conference I have attended – expectations were high!

On Thursday evening I boarded the train home – flagging and exhausted, with a lot to process! My feelings during the week were so mixed.  At times I felt the buzz of enthusiasm, of future prospects; at other times I felt the despair and struggles still going on all around us in dementia care – not to mention to the health and social care systems as a whole!

A question

The Congress opened with a debate, the subject in question: has dementia care improved in the last 10 years?
Despite the immense challenges still ahead of us, it is clear that times have changed since 2005. With the rise of dementia awareness, and increased funding into research, times are set to continue changing – it’s safe to say I’m excited to be a part of it!

Reflections

I have tried to summarize my reflections in 4 points:

  1. We were given a statistic that 80% of people living with dementia live at home – I wonder why, then, the vast majority of the talks and groups at this conference focused on long term care and acute hospitals?
  2. There appeared a distinct lack of recognition of Occupational Therapy and the multi-disciplinary team. One presentation in particular boasted of multi-disciplinary involvement in looking at nutrition and dementia on a hospital ward – need I explain my indignation at OTs NOT being involved in the MDT list provided?! Aaaand breathe…
  3. There seemed to be limited focus on understanding eating and drinking difficulties in dementia, and little research about it – something that definitely encouraged me to continue with my research, of course.
  4. A positive – it was really great to see and hear about small projects springing up around the country: wards and A&E departments being renovated to be dementia friendly, a dementia home treatment team being set up and projects to make the care provided in care homes more person-centred. Another of my favourites – an excellent research project on how to use gardens in a therapeutic way, to improve the quality of lives for people living in care homes.
    Despite the sparseness of outcomes or evidence presented in some of these, what excites me is the fact that things like this weren’t happening 10 years ago. Who knows how much further these will have developed in the next 10 years, becoming so much more wide-spread?

Look to the future!

So… I encourage everyone reading this to look forward with anticipation towards the next 10 years. Sadly, the prevalence of dementia is currently on the rise, but with a continued fervour for research and an ever-increasing awareness of it, there is strong hope for improved quality of care and dignity for people with dementia… perhaps even a cure.

Should Clinical Practice have to be secondary to Academic Research?

The Clinical Academic pathway I am undertaking involves splitting my time, 60% academic and 40% clinical – this is often a tough ask. Priorities must be balanced and schedules carefully managed. With this split, the question often raised is this: during my PhD, is my clinical work secondary to my academic?

I would argue no!

Of course, research is important – why else would I have chosen to commit the next 4 years of my life to it? Research is essential for developing innovation, knowledge and understanding, consequently responding better to an evolving healthcare system. Undertaking the PhD will enhance understanding in how to apply research in clinical settings and to ensure evidence-based practice.

  1. I consider attaining my PhD in the next 4 years as the key to my future – so why is my clinical time just as important?
    Clinical work is what originally drew me to become an Occupational Therapist (OT) and has driven me to continue: this compassion for vulnerable individuals, and the fulfilment and satisfaction of making a difference in people’s lives. Without clinical practice I could never experience the precious moments where a distressed and agitated person connects through a calm smile, where a piece of music brings a withdrawn person to laugh, sing and dance for a few minutes. These interactions cannot be felt from the “ivory tower” of academia.
    Working effectively and compassionately with patients who have dementia is a highly-skilled role. There is no comparison to clinical practice when developing face-to-face skills and maintaining a passion for giving these people quality of life. 
  2. Clinical practice, as an OT in my case, provides a plethora of skills which pure academia could not. My current role, though not exclusively working with people with severe dementia, is still extremely beneficial. The role enables me to develop my understanding and practice of the complex needs that older people have. In order to maintain functional independence for as long as possible, someone with dementia may also require specialist seating, complex moving and handling care plans, pressure relieving equipment, mobility and functional assessments and much more. These care plans are formed and prescribed using skills which OTs need to develop in practice – not just to read about.
    Without the clinical knowledge that I have developed so far – skills that I will continue to learn and develop – I will not become an accomplished, reliable and effective leader in my clinical field.

Without the clinical knowledge that I have developed so far I will not become an accomplished, reliable and effective leader in my clinical field.
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The clinical academic route can be a lonely one, not belonging fully in either camp, and it is not without its challenges. Without doubt it takes both time management and discipline to fully commit to both, but there are so many benefits to continuing development in both fields. I am confident that through this course I will be able to contribute to the care of people with dementia in a way that is unique and makes a significant, lasting, difference.

 

Can phd change the world? Occupational Therapist mug says yes!

Ready to change the world – challenging nutritional care in acute hospitals

On overhearing a 3rd year PhD student saying that “when you start your PhD you think you will change the world but you very quickly learn otherwise, realising your work will be of little significance”, I was horrified and disappointed – what is the point of what I’m about to embark on? Why spend 4 years of my life working towards something which will not have any impact?

Perhaps with the naivity of a new starter, I fought the idea of my PhD being insignificant. Perhaps it is the naivity of a new starter which continues to drive my fight against the disappointment of not being able to change the world, but an inspiring talk from Dame Jessica Corner*, at the Faculty of Health Sciences Post Graduate Conference last week, reassured me I need not be disappointed – that I have started a journey which will create impact on the world to a lesser or greater extent. Dame Jessica advised us that the 1st step to changing the world is to “believe what you are doing is important” and that is certainly something I can acclaim to! My PhD is just a baby step, I am still right at the beginning, but I am confident that Occupational Therapy, Dementia care and reducing malnutrition are all important enough to invest time, money and effort into. There are still plenty of opportunities for my research to fill some gaps and change practice and guidelines for care!

Here are two reasons why I believe what I am doing is important:

  1. We need to listen to those in our care

So far I have found plenty of research on how to improve meal time experiences in long term care settings – environmental changes and strategies to improve social interaction at meal times, for example. There are observations and concerns about insufficient assistance while eating and drinking, and meal times being a task rather than an engaging activity in both long term and acute care. But what about the views of those who, for one reason or another, are malnourished?

What about asking and observing those with dementia in our acute hospitals to really explore and discover the reasons behind not eating and drinking? What about examining the reasons for aversive behaviours at meal times instead of brushing someone off because of their “challenging behaviour” and therefore minimising their independence.

  1. Occupational Therapy skills and the importance of a multidisciplinary approach are not being recognised for their potential impact

After hearing a talk from Dr Tara Sims** at the PGR conference and reading the papers referenced below, I have felt a renewed enthusiasm for being an OT, the impact the skills of an OT can have in care, and especially in challenging poor nutritional care. Occupational Therapists have the skills to assess and evaluate the eating process, as a vital activity of daily living, and can make significant contributions to individualised care plans. Using a holistic approach and activity analysis, we can assess the cognitive, mental, physical, social, sensory and environmental factors around a meal time experience, working with other professions to inform care.

Imagine the impact if OTs, Dietitians, Speech and Language Therapists, Nurses, Doctors and Physiotherapists all combined their extensive skills to comprehensively evaluate malnutrition and dehydration in acute hospital care – I think it’s safe to say we could change the world!

 

* Dean of Faculty of Health Sciences, University of Southampton
**Senior Lecturer in Occupational Therapy, London Southbank University

References

American Journal of Occupational Therapy (2007) Specialized Knowledge and Skills in Feeding, Eating and Swallowing for Occupational Therapy Practice. American Journal of Occupational Therapy 61(6): 686-700

Paul, S. and D’Amico, M. (2013). The role of occupational therapy in the management of feeding and swallowing disorders. New Zealand Journal of Occupational Therapy 62(2): 27-31.

Clinical Academic Research – Dementia PhD

As I approach the first milestone of my PhD – the formulation of a research question – I felt it would be good to start a record of my studies, to share some of the interesting finds and information that I come across during my time as a doctoral fellow.

So who am I?

Naomi Gallant: newly married and recently embarked on a Clinical Academic PhD with the University of Southampton. As a doctoral fellow in the Wessex CLAHRC, my research is focusing on improving quality of fundamental care for people with dementia in acute hospitals, specifically reducing the risk of malnutrition and dehydration. I’m a qualified Occupational Therapist (OT), graduating from University of Southampton in 2011, since when I have held several OT roles ranging across physical and mental health settings. Not wanting to lose these clinical skills, and realising the importance of research influencing care at the point of delivery, I have chosen to follow a clinical academic route with the aim of collaborating research and practice.

So why dementia?

There is a significant need in our society for an increase in dementia awareness. As the Department of Health (2013) highlights, society is not geared up for the increase in the condition, with avoidance being a common reaction – something which needs to be challenged. Conversations with those outside of the clinical or academic world only serve to emphasize the need for dementia awareness in people who have not experienced it within their own spheres. Comments such as “can someone with dementia really use Twitter?” and “the government have spoken a lot about dementia, it must be a real problem?” have fuelled my desire to spread the ‘Dementia word’.

So why me?

Since 2011 I have worked in a variety of settings, both as an OT and a Health Care Assistant (HCA). My time as an HCA in 2 different dementia care homes initiated my passion for ensuring optimum quality of life for people who are unable to express their needs due to severe cognitive impairment. My experience of seeing people, bed bound, in advanced stages of dementia furthered my realisation of a need for better understanding of, compassion for, and care towards these people.

As an OT I have worked in acute dementia wards, community care teams, and general hospital medical and rehabilitation wards. Despite the variation from specific dementia care settings, and despite a lot of wonderful, compassionate nursing staff, I have seen a need for improved dementia care in all of these places. The need seems especially acute on hospital wards where the environment, staff training and resources are primarily ill-equipped to face the challenge of a growing dementia population.

With all these factors combined, the opportunity to undertake this research – which could in small or large part contribute to future policy making – was one which I could not let pass me by. I hope you enjoy the insight this blog aims to bring into my journey.