“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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Phd Rollercoaster Ride

The Phd Rollercoaster Ride

As I browse through my past blog posts, one sentence strikes me as particularly amusing (from the post ‘1 year doing a PhD – things are starting to happen!‘ )

“I’m close to submitting the 3rd…milestone…– it’s time for the pace to pick up!”

Well here I am 8 months later and it certainly doesn’t feel like any pace has picked up!

The Phd roller coaster ride

I like to think that the point at which I wrote that post I was teetering on the highest point of the roller coaster tracks, having trudged up the hill, slowly and laboriously, almost to the point of completing my research proposal. The view was amazing – data collection, research findings, publications and presentations were all on the horizon.

Then I submitted!

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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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Working together – Primary Care and Public Health 2016

Working together in health care is so important, and where are all the OTs? These are my main take away points from the Primary Care and Public Health conference 2016.

Wednesday morning at the NEC, Birmingham; the Exhitbition Hall was buzzing with thousands of people and almost 200 stands displaying health care related organisations, products and brands. The range was incredible: mother and baby, rare illnesses such as Ehlers-Danlos syndrome, skin care, nutrition, cancer, older people and much more. At the back of the hall were small “theatres” with bitesize presentations about the body, skin and nutrition. What a lot to take in and explore – so what did I discover?

Where are all the OTs?

The range in the Exhibition Hall also reflected the amazing variety of presentations available to attend. Twenty one different programmes ran across the two days and I heard talks from, and spoke with, GPs, Practice Managers, Physios, Speech and Language Therapists, Social Workers, Dietitians, Nurses..! Everyone apart from OTs!

There was a “Therapy” programme which had some interesting talks but the vast majority of speakers were Physiotherapists. So if any of you are OTs who attended, I’d love to hear how you found it! As a profession, we have so much to shout about, let’s hope next year we can have more of a presence!

Working together for quality care

For me the resounding message across the conference was the importance of working together, providing good quality care through multidisciplinary, multi-speciality and multiagency input.

As health professionals we can be defensive about our roles, and rightly so! We all have valuable skills which we have worked hard to accumulate – professional identity is important.

However, in the care of older people especially, we work with complex patients and, not only do we need to work together, but learn from each other to be able to work better!

Three talks highlighted this to me:

Diabetes and Dementia by Jill Hill (Diabetes Nurse Specialist)

I’m no nurse and I’m no diabetes specialist but I do complete my own assessments of vulnerable and unwell people in the community. Jill emphasised the importance of holistic assessments, gathering the whole story.

What functional and cognitive abilities does someone need to manage their medication or insulin? How will it impact somebody psychologically, as well as physically, when they start to lose control of managing their diabetes? What impact will the physical effects of diabetes have on somebody’s dementia pathway?

Learning from each other is so important in a health service where, often, only one health professional will be completing an initial assessment.

Eating and drinking in older people with dementia – two presentations by Lindsey Collins (Speech Therapist) and Lee Hooper (Dietitian)

Now this is an area in which I have some knowledge! I’ve been reading on the subject in depth for over a year now, as you will see from my previous blogs. Despite this, I learnt new things in both talks.

Lindsey expanded on the Enriched Model of dementia care developed by Tom Kitwood in the ’90s and it was really interesting to apply this to eating and drinking. Lee shared a recent study called DRIE about dehydration in older adults, with some shocking statistics – in their study 62% of people admitted to hospital with dehydration were still dehydrated 48 hours later!

As a Dietitian, a Speech Therapist and an OT we all need to bring our individual perspectives to research, assessments and care plans. We also need to work with, and learn from our other health professional colleagues. Only then can we make a difference in quality of nutritional care for people with dementia.
This is such a small part of my experience of Primary Care and Public Health 2016. I would highly recommend this FREE conference and exhibition to clinicians working in all care settings. You couldn’t attend and not bring something new away to apply to practice.

I look forward to seeing you at Primary Care and Public Health 2017!

 

Tissue viability - Dementia Care Research

Nutrition and skin health – learning from ANTS training day

A great opportunity came up for me when I was invited to present at the Agents for Nutrition and Tissue Viability Study day (ANTS) at the Royal Bournemouth Hospital last Tuesday. If you read my previous blog post Understanding Eating in Dementia – more than just memory loss, you will get a brief overview of what I talked about!

Aside from my own presentation, however, it was the rest of the day that I particularly enjoyed. I loved hearing how nutrition is so relevant to such a range of topics – Acute Kidney Injury, Diabetes, Stroke, Tissue Viability – and developing my knowledge about PEG feeding and Nasogastric tubes!

Care of older people is complex and I would challenge anyone who claims they don’t want to work in older person’s medicine for fear that it would be boring!

My favourite sessions were from the tissue viability nurse; skin integrity is such a complex issue and nutrition plays such an important part!

Tissue viability

For the non health/medic people out there, this is basically skin health. It’s sadly common for older people especially (though not exclusively) to have skin damage through not having healthy skin.

The damage can develop from pressure on a particular area, from friction/shearing on movement or because of prolonged moisture exposure. Often older people, especially those who are unwell in hospital, are at a high risk of skin breaking down and developing sores, which can lead to complex health issues.

“Wounds can heal without dressings” – TV Nurse Specialist

There are various ways of keeping skin healthy – changing position regularly, good personal hygiene, correct moving and handling… and nutrition! Keeping the skin nourished and hydrated is a massive part of wound prevention, but what about healing?

Nutrition and wound healing

The best bit of the talk, for me, was when the tissue viability nurse made the controversial claim (from a nurses perspective anyway!) that wounds can heal without dressings.

I’m not a nurse and don’t know a lot about wounds, so here’s my number one piece of learning of the day! Nutrition is essential in the healing process!

What nutrients does the body need for each stage of wound healing?

  1. Haemostasis (blood clotting)
    – energy
    – protein
    – vitamin K
  2. Inflammation (blood vessels dilate to allow nutrients to reach the wound)
    – vitamins A, C and E
    – selenium
    – antioxidants
    – energy
    – protein
  3. Proliferation (granulating tissue)
    – energy
    – protein
    – copper
    – iron
    – vitamins A, B6 and C
    – zinc
  4. Remodelling/maturation
    – energy
    – protein
    – zinc
    – vitamin C
    – iron

I hope that is useful information for all you health professionals or people looking after loved ones with skin sores. Isn’t the body a fascinating thing!?

And remember – when people with dementia are on hospital wards they especially need our help to stay nourished!

 

PhD 1 Year | Dementia Care Research

1 year doing a PhD – things are starting to happen!

Just over a year in, and I’m close to submitting the 3rd and final milestone of my clinical-academic PhD – it’s time for the pace to pick up!

This milestone is my research proposal, combining and justifying all the procedures and theory that underpin the research project, and laying out a plan for how it’s all going to work in action.

Milestone 3 is a great time to look back, to realise what the last year has been all about.

Learning, learning, learning!

  • Background work – hours spent on reading papers and publications, completing the University of Tasmania Understanding Dementia MOOC, attending conferences, networking events and much more!
  • Completing my literature review – something I’ve never really done to this extent before, moulding my research idea to be filling a gap, and adding new knowledge – such an exciting prospect!
  • Research training – 5 modules giving me the basis of how to be a researcher, even beginning to understand the difference between Methods and Methodology!

…the juicy bit begins

Milestone 3 is also a great time to look forward. Once I have jumped this hurdle I can start the process of Ethical Approval and then actually begin some data collection! (Fingers crossed!)

What comes next?

So, for those of you tracking my progress here’s the summary of what I plan and hope to do:

  • Observe meal times using Dementia Care Mapping (stay tuned for another blog about this amazing tool!).
    In a nutshell: it will be used to measure people’s well-being and engagement during the meal time, and to see what is going on around meal times that may impact the experience.
  • Start to build a model of areas which influence the eating process for people with dementia on acute hospital wards.This might be able to be used in future to understand what the problems may be, as well as in education and training for health care staff on hospital wards – I may as well aim high with the impact of this work!
  • Interview staff about the tools currently used to encourage eating and drinking, and what they see their roles as in this process. You will be aware of my passion to see Occupational Therapists doing more to impact nutrition care plans in acute hospitals and this part of the research will hopefully start to reveal what might be stopping that at the moment.

So to conclude, I have come to realise I’ve done a lot in the last year, and I’m super excited for what is to come!

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.

Reaching a phd milestone is a good time to look back

PhD Progress and Academic Advice – What I learned in my first PhD milestones

It has been a while since I last posted so I thought I would update you on my progress. The last couple of months have been primarily spent working on my 2nd milestone – the initial literature review.

What does this involve?

A lot of searching databases, a lot of reading, and a lot of learning! My conclusion: confirmation of my belief that dementia care in acute hospitals, more specifically during meal times, is a much needed and relevant research topic.

So, despite ups and downs, despair and breakthrough: the times I wanted to give up and the times I may have lost my passion and direction, I am (for now) ready to soldier on!

Relief is the best way to describe how it feels to finally submit this milestone. Pulling all the work together, and realising my final conclusion, has lifted me back up to carry on. On top of this, a reflection on the last 9 months has given me the little boost I needed.

Reflecting…

Having started in February of this year, I missed the initial research modules provided to the new starters of last October; therefore, I found myself, this October, in the ‘research training’ with a group of amazing enthusiasts ready to start their own Masters and PhD programmes. In addition to the valuable teaching from the module I began to realise something else – I actually have made progress personally, professionally and academically in the last 9 months! Being able to answer some of the worries and concerns these people felt as they entered the unknown instilled some self-confidence, in that I have the answers to SOME of the questions.

Some practical tips!

In light of my experience so far I will leave with a little advice for anyone embarking on this journey (or thinking about it):

1. There will be good times and bad, and you will not always feel positive but keep your eye on the goal and keep hold of why you chose to take this path.

2. Right from the beginning keep a record of your search strategy and reading – this will save a lot of time!

3. Use each other for support, meeting up for coffee is not a waste of time (unless it’s too often!). Often talking through and encouraging each other can give you the boost you need!

4. Value your clinical work, don’t lose focus on the reason for choosing a clinical academic pathway.

5. Finally… this advice from Dame Jessica Corner: “the first step to changing the world is to believe what you are doing is important.”