Mental Health and Dementia Research

Mental Health and Dementia

I was recently invited to be part of a Q&A panel at an evening discussing mental health at my church – Lansdowne Church, Bournemouth (to watch a video of the full event, click here).

The questions for me primarily focused around the issue of mental health and dementia – a very under-researched, under-diagnosed and misunderstood topic! I did my best, within my knowledge and understanding, to answer the questions that came my way, but it inspired me to look a bit further into the issue and share a blog post about it… I hope you find my musings helpful!

Mental health and dementia – what is happening in the brain?

Firstly lets take a look at what is happening in the brain for people with either dementia or living with mental health problems. For a simple and visual summary of how the brain works see the following image:

I’m not a neuro-psychiatrist (as much as I’d love to be!) and do not claim to have extensive knowledge of the brain and its workings! But two things I’d like to clarify about mental health and dementia before I start:

Mental illnesses are disorders of the brain, dementia is a disorder of the brain: it is inevitable that they will overlap.

Mental illness and dementia are NOT the same thing.

What is dementia? Most simply put, it is a change in the physical structure of the brain through death of nerve cells, and the breaking down or disruption of connections between nerve cells. There are many reasons for this depending on the type of dementia diagnosed e.g. reduced blood supply or bleeds, or clusters of unwanted protein matter damaging the cells. There are different types of dementia, and if you want to know more about this I highly recommend the set of YouTube videos produced by the Alzheimer’s Society on different types of dementia.

What is mental illness? I’m not even going to attempt to define mental health problems!
Regan (2016) (link below) summarises mental health as “a positive experience of self, individual resources including self-esteem and optimism, the ability to sustain relationships and resilience”.

There are a huge range of issues which disrupt this ‘healthy’ mental state: from mild anxiety or depression to severe cases of psychosis, schizophrenia and bi-polar. Some mental health problems can be addressed without medication, through re-training the brain – to manage emotional regulation, and to combat thought and behavioural patterns – and by making changes to live a more healthy life style. On the other hand, some problems need medication to manage physical changes in the brain and chemical imbalances.

Ultimately, in either case, the brain is not functioning in a way to keep our thought processes healthy – in turn this impacts our emotions and our behaviours.

Whatever the cause or cure, living with mental health difficulties can feel like a daily battle, taking up a lot of emotional, physical and mental strength, and can have a real impact on our ability to function.

So combine this with a disease that is already impacting the ability to function on a cognitive, physical or emotional level and you can see where the complications start!


Dementia and mental ill-health

Developing dementia when already living with mental health problems can be very difficult to manage and understand, both from the person experiencing it and those caring for and supporting them. On the other side of the coin, the physicality of what is happening in the brain in dementia can also be a cause of mental health problems.

Think about it: if parts of the brain that manage emotional regulation are disrupted by dementia, then managing distress and anxiety will be much harder: possibly leading to aggression or withdrawal. If the part of the brain that manages visual processing is disrupted, the brain may create sounds, sights or smells that aren’t really there (also known as hallucinations). Psychotic symptoms (delusions, hallucinations, apathy, aggression etc.) are surprisingly common in dementia:

41% of people living with Alzheimer’s disease present with psychotic symptoms at some point!

20% of people over 65 develop psychotic symptoms by the age of 85!

Symptoms of mental ill-health in dementia are very hard to treat in the way it would normally be treated; anti-psychotic medications have been proven to have many negative effects on the functioning, and quality of life for people with dementia; talking therapies are not effective when a person is beyond being able to articulate and process conversations.

In the later stages of dementia a person may present with symptoms and this could be as much as we can manage.

How to help

The problem with such a lack of understanding and focus on this area results in carers (and people supporting those with dementia and mental ill-health) feeling lost and under-equipped to manage presentation and symptoms.

I’ll use the summary of mental health used earlier to shape some simple advice and tips for helping those for whom mental health and dementia are issues:

  1. “A positive experience of health… self-esteem… positivity”
    Enable the person to engage in activities that are meaningful to them – something that is familiar and will build their sense of self.
    This could look like supporting people with domestic tasks, e.g. putting clothes in to a washing machine. Even if they don’t remember (or can’t work out) how to use it, they may still be able to physically put the washing in and take it out. Or it could be looking at photos of family or of life events where they take their identity.
  2. “Sustain relationships and resilience”
    Help tackle social isolation – loneliness is horribly common among older people, and inevitably leads to depression and cognitive decline.
    Find ways of increasing interaction, whether that’s visiting more often, or arranging a befriending scheme.
    Isolation can happen in a busy environment – if you work in a health or care setting, make the effort to have a chat! Even short, passing conversations can help to avoid loneliness. Try talking about something meaningful to them whilst assisting with personal care tasks.
  3. Expression of self is another key to having a healthy mental state.
    Try different sensory approaches – communication isn’t just talking! Use music or art, textures and touch/pressure to allow expression of feelings or frustrations. Or use pictures or sounds to reminisce.

The first thing to ALWAYS remember when managing symptoms of dementia and mental ill-health is to know the PERSON and to ensure they are at the centre of all we do.

You can read my blog about the Enriched Model of Dementia Care for a more detailed reminder.

For anyone wanting to know more about this topic, I’d encourage you to read this recent review (where I got a lot of my information for the first part of this blog post!): The interface between dementia and mental health.

Please do scroll back through my other blog posts and/or get in touch for more details and advice about living with dementia, and for caring for people with dementia. 

Dementia Research Conference Scotland Edinburgh

Forging New Frontiers in Dementia Research – Edinburgh

As the end of the PhD draws ever nearer, I’m finding myself thinking more and more of the next steps… where will this take me? what will I be doing this time next year? Will I continue in research, in clinical work or manage to find a role that combines both?

With all this running through my mind it was great to have the opportunity to fly off to Edinburgh and spend a couple of days with other people completing their PhDs in dementia care, scoping out the future of dementia care research whilst building some great networks.

Here are my reflections and, of course, as always, my take-away points which I hope will also be helpful for all those dementia researchers out there, in case anyone is losing the will a bit!

The conference was very different to anything I’ve been to before – with less listening and more doing! It was personal, inspiring and fun.

The days were split between listening to others talk and joining in different and creative activities:

  • A range of practical and informative talks:
    • Al Innes showed us the funding landscape,
    • Agnes Houston shared her experiences of living with dementia and involvement in research,
    • Rob Thomas described his experiences of being a carer of a loved one with dementia leading to conduction dementia research,
    • Megan O’Hare navigated us round the NIHR website and where to look for future opportunities.
      Certainly an inspiring group of people – the world is our oyster!
  • On the afternoon of day 1, we spent some time being arty and creative! We made a mandala of all our self-representing objects, and then wrote haiku poems! There was a real connection felt between everyone there.

It was exciting to feel and be part of the buzz and rumbling of motivation, inspiration and passion for the future of dementia care.

  • Day 2 afternoon we had the privilege of Fiona McNeill Associates facilitating an afternoon of Appreciative Inquiry. We weren’t allowed to have paper, pens or any devices out during this exercise – a real challenge as you can imagine!As a result my memory has faded as to what we actually did (we will have a report from them to remind us!). What I do remember was an afternoon of discovering (what we are already doing so well), dreaming (of an ideal future for dementia care and research), designing (action plans for how we would do this) and delivering (hypothetically! Specific action plans for each person).

    Although the actions were just a part of the exercise it was refreshing to dream and come up with something quite feasible for using the connections made at the conference beyond Edinburgh and into each of our dementia research careers.

Most importantly, these exercises revealed a room full of compassionate researchers.

The driver of their amazing work now and in the future? A heart for the people they are aiming to help.

My highlight of the 2 days

3 talks by “successful researchers in dementia care” – none of whom would identify themselves in that category, which was telling!

It was uplifting to hear from these researchers; nearing the end or retired from their careers, not condescending but humble, not losing sight of the reason for their careers – to improve the lives of people with dementia through effective and relevant research.

So, I leave you now with some excellent quotes and advice from Professor Charlotte Clark, Professor Brendon McCormack and Dr Harriet Mowatt – in our eyes successful, but as Dr Mowatt said:

“Success is a negotiable commodity”

  1. Work/life balance does not necessarily mean keeping them separate. What is important to us makes us who we are at work and at home. If we care about our work, which was very evident among everyone at the conference, it is part of who we are. The challenge we received – are we flourishing as people? Both at work and in the rest of our lives.
  2. Be comfortable living in times of a state of mess and not knowing – let yourself say “I don’t know”, it’s liberating! We can only learn what we don’t know.
  3. “Hang onto the coat tails of others” – I love this one! Connect with critical connections and when you find lasting ones, don’t let them go. Ride on the wave of other’s success if needed!
  4. Be clear of (and don’t let go of) your core values. You need to be connected emotionally to what you are doing in order to make a real difference to people’s lives through research.
  5. Be prepared to shift your gaze as you age! Goals and aspirations are great, but be prepared to be flexible, and keep hold of what really matters in life!

You need to be connected emotionally… to make a real difference to people’s lives through research.

PHD Update Celebration - Dementia Care Research

Where have I been? A PhD update & some top tips for getting through one!

It has been FAR too long since I sat wrote a blog post, so firstly I apologize for my absence!

So what have I been doing these last few months?

The last time I left you, I was feeling motivated and passionate about my clinical academic role and my future. I can’t stress how important those moments of enthusiasm, positivity and motivation are in this PhD journey:

It’s been a tough few months!

You’ll remember my analogy of the PhD being a roller coaster ride. Well, I feel like the last few months have been one long, slow, HARD trudge up a slope. In fact I think the cart might have stopped half way up!

Being positive and persistent is very important, but I think it’s more important to write really honestly here. I don’t want to cover up how difficult this journey can be with positive and motivational snippets.

The last few months has not been without major stress, panic and anxiety attacks, feelings of losing control, and tears. Of course the ‘cart’ never actually stopped – but it has been hard!

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Why I love being a clinical academic: A week of reminders

A couple of weeks ago I had a very positive week – a series of events that inspired me and reignited my motivation to be a ‘clinical academic’ (or rather, my full title: Clinical Doctoral Research Fellow (CDRF))!

The opportunities this role is already providing, and will provide in the future, are unique and certainly would not have been available had I continued in my full time clinical role as an Occupational Therapist.

My encouraging week was made up of three separate events: the CDRF Conference, teaching undergraduate Occupational Therapy students, and meeting a final year OT undergrad to discuss clinical doctoral research fellowships.

1) CDRF Conference

This was an event for clinical academics within the Faculty of Health Sciences at the University of Southampton. I presented my first ‘3 minute thesis’ style presentation which was nerve wracking! It seemed to go well as it was followed by some engaging questions and positive feedback. Thankfully I was first up so could relax and enjoy the rest of the afternoon.

Naomi Gallant Clinical Academic Presentation - Dementia Care Research

My highlights from the conference:

Other research projects

I’ve said it before: hearing about other projects and the variety of professions doing research makes me excited to be part of something bigger.

A PhD can be a lonely journey, perhaps especially when pursuing a clinical academic route – you can read more about this in my previous blog post “Should Clinical Practice be Secondary to Academic Research?”. Listening to talks about other research topics and seeing people present from various stages of the PhD process makes me feel part of a collaboration of people who are fired up and set to change the scope of our future health care.

Post-doc clinical academic stories

It was really encouraging hearing from Annabel Rule and Lotty Brooks – our trailblazers who are (almost) out the other side of the PhD. Both also happen to be Occupational Therapists! They presented on their roles since completing their PhD: each very different but comforting to know how many options there are following this.

Annabel (in the final stages of her thesis write up) has taken a more clinical route to begin with, managing a team of Occupational Therapists in older person’s medicine in acute care. This job is very relevant to her PhD research project! She described how, despite it being a clinical role, her skills and expertise gained during the PhD are invaluable. My favourite quote: “being a clinical academic is a state of mind – not just a job role”.

“Being a Clinical Academic is a state of mind – not just a job role”

This is a challenge for me to continue to be a “Clinical Academic” in my mindset, whatever happens in 2 years’ time –  always keeping impact on clinical practice at the forefront of my research mind, and always implementing research skills and evidence based practice into my clinical work.

Lotty has had a bit longer since completing the PhD. In that time she started off being employed in a full time research role, before the amazing opportunity arose to have a clinical academic role. She is now using her clinical, research and project management skills towards a job that involves clinical service development, seeing patients, research, and having input into the undergraduate teaching material for Allied Health Professionals. This kind of role feels very far away, but Lotty left us with some encouraging words: “The PhD is a marathon not a race”

“The PhD is a marathon not a race”

To bring it back to the present (after all I have a considerable distance of that marathon yet to complete!), the clinical doctorate also provides opportunities right now that I wouldn’t have had otherwise…

2) Teaching undergraduate Occupational Therapists

Just a couple of days after the conference, I co-facilitated a workshop for undergrad Occupational Therapists about communication with people with dementia (stay tuned for top tips in my next blog post!).

This is honestly one of my favourite things to do – to share my learning, knowledge and enthusiasm with the next group of people to be entering and shaping the NHS, and particularly the world of Occupational Therapy. I’m not far into that process myself but far enough to be able to teach the people in the same place I was 9 years ago(!!!)

The group were really engaging, asking lots of questions which made us realise how much we have learnt in our time as clinical academics researching dementia care! Afterwards we were able to feedback to each other, with some positives and negatives about teaching and facilitating techniques.

What an amazing opportunity, just 2 years into the role. It made me realise how I can inspire the next group of Occupational Therapists – not only in becoming excellent health professionals but also promoting the need for research in practice and even the clinical academic role.

3) Meeting with final year Occupational Therapy student

As if to consolidate my feelings, the same afternoon I was able to meet for coffee with a final year Occupational Therapy student to answer questions about the clinical academic pathway. It was ideal timing for me to honestly reflect on, and share, my journey so far. It is great to be able to encourage others to take on the challenge of embedding research into clinical practice, while continuing to grow and develop as an Occupational Therapist in practice.

I had a lovely email that evening from the student expressing her excited anticipation of applying for the clinical academic doctoral post – the perfect ending to an inspiring and motivating week!


Being a clinical academic isn’t always easy

You will know this from following my blog posts so far!

Still, this week of sharing the ride, influencing and inspiring others, was exactly what I needed to consolidate my enthusiasm about the clinical academic role.

It was just the push I needed to keep going, enjoying the opportunities I have now and keeping my eye on the goal ahead!

“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!