I started working in the research project on dementia at the time of my life when I was bringing up my little daughter, Maria, who is now sixteen months old. It’s not by accident, perhaps, that I’ve found myself in the situation where the beginning and the end of life meet. While I’m coding the interviews conducted with people dealing with dementia on professional and personal level, I’m asking myself what it means to be a carer and what we can learn about the young and the old age when we experience them at the same time.
In my husband’s Italian family there’s an old lady, also Maria, called by everyone La Nonna. When I met her for the first time, she was approaching 90. This year she reached 102. When I started visiting the Neapolitan family, my Italian was almost non-existent. I could politely introduce myself to Nonna Maria, saying what my name was and that I was Polish, and that was all. As my language skills improved over the years, the communication skills of Maria deteriorated. I regret we never managed to have a proper conversation. By the time I was able to express myself in Italian, Maria was caught up in loops of repetition, asking the same questions all over again. We would meet over Christmas. The first two or three minutes seemed ordinary as I would be asked what my name was again, where I came from and which of the men at the table was my husband. Then the relationships had to be established: my husband was the older brother of Maria’s granddaughter’s husband. And then it would continue: What’s your name? Where are you from? Who’s your husband? Whose brother is he? Who’s my granddaughter’s husband? Ah, this young handsome man? Va bene, va bene. And then again, from the start. And again. Maria’s daughter would try to excuse her, even though there was no need. I would answer all the questions again and again. I had patience because I was meeting Maria only a few times per year. Maria’s daughter, now in her mid-seventies, taking care of her mother for over twenty years, every day and every night, was losing her patience. She would lose her temper sometimes and shout, which was hardly surprising. She was exhausted and she needed help.
I also needed help while I was taking care of my baby. My growing tiredness and irritation were a clear indicator. Maria often didn’t sleep during the night. With her floppy larynx, she had problems breathing. Then there were tonsillitis, infections and teething. The day after a sleepless night is tough. After a while, you need to involve other people as without sleep it’s impossible to be a good carer.
Also Nonna Maria had problems to sleep during the night. She would need help for her frequent visits to bathroom, so her daughter wouldn’t sleep either. In the South of Italy, there is not much on offer regarding caring services. Nothing really for dementia patients. No respite care, no care packages. The expectation is that this is the family who take up the role of carers. To be more precise, the women in the family: wives, sisters and daughters. Nonna Maria has a son as well, living next door. An energetic man in his late sixties, who long ago decided that the care is his older sister’s business. No job division between them, no discussions and no shared decision-making. Instead, other women were called to help. Badanti: Polish and Ukrainian women who would live with the families and do the 24-hour caring work. In the week they would have two afternoons free: on Thursdays and on Sundays. Otherwise, they would be available all the time. An exhausting job. Often paid in black. Nonna Maria would have many of them over the years. They would come and go. Returning to their own families or simply changing Italian employers. As residential care is not easily acceptable in the Mediterranean context, Eastern European badanti became thus an institution, which imperfectly fills the caring gap.
They would cope together. Nonna Maria, her daughter, and a migrant carer. Cold seasons in the mainland, hot seasons by the sea. Christmases, Easters and birthdays with the large family. I remember how elegant Nonna Maria was. Dressed all in black, with a fur collar (there was certainly some animal involved) and a string of pearls. White hair perfectly done thanks to her daughter, a pair of silver-rimmed glasses. Seated at the top of the table, she was the personification of a different epoch. She would sometimes recite the poetry she remembered from school. Long pieces in old Italian I could hardly understand. Otherwise, she would ask the same questions, all over again. And in between she would make a comment that was perfectly accurate. And often very funny as she did have a good sense of humour. After she reached 100, she started withdrawing, becoming more and more absent. She would sit at the table without saying a word. She ate very little and felt cold all the time. In the room full of people, she would sit close to the fireplace, in her beautiful black winter coat. But she did get very interested when she saw me pregnant. She congratulated me and wished me a quick and easy labour. And that was the time she hardly spoke.
A few months later she met my baby and something opened in her. She took little Maria’s hand and started the baby talk, with its various sweet sounds. My baby smiled. I was looking at them, two Marias, a hundred years apart, linked by this very special human bond. A few months later Nonna Maria’s great granddaughter was born. And again we saw this beautiful connection between the oldest and youngest generation. What we all wanted were the words as we rely heavily on verbal communication. And when the words failed us, we didn’t try other means. The arrival of the two baby girls showed us that hand-holding is a powerful way to communicate that we are here for each other.
Nonna Maria died three weeks ago. At home, with her family. The sadness was mixed with relief. And then guilt as we are not supposed to feel relieved when somebody dies. Maria’s daughter is like a teenager now trying to make the most of her life. She wants to travel and go out, meeting people and enjoying her food and drink. She is on holiday now. She is free.
Baby Maria enjoys her summer, exploring the world and doing all the wonderful things for the first time. I’m happy to be her mum and her carer. One day I’ll get old. Would I agree that Maria becomes my carer? No. I hope there will be other options.
(C4, Wednesday 12 and 19th June, 2019, 9pm, 60 mins)
There are fundamental errors that make this programme bad for people with dementia and those who care about them. The idea is that people of working age who have dementia are 'on the scrapheap’, but they could work if only their own lack of confidence, public attitudes and employers’ expectations could be changed. What will change these things is an 'experiment’: set up a restaurant open to the public, put people with dementia to work there, and invite some celebrities to model destigmatising attitudes. It’s been done in Japan, so it will surely be a success in Bristol.
According to the online blurb, among the 14 participants are “Jacqui, a lawyer who has stopped working since her diagnosis, and who relishes the challenge and sense of purpose the project has put back into her life. Another participant, Steven, is glad of the opportunity to show others how able and willing he is to make a positive contribution through work, and to fight the impression that those with dementia are unable to remain valuable members of society.” “What could possibly go wrong?” asks one of the volunteers.
I’ve only watched 1½ episodes of this programme, but I fear that is it likely to fall short in its mission to revolutionise thinking about 'young onset’ dementia. This is because, from the outset, it presents people with dementia in a negative way.
The narrative explains the impairments that they have - that is necessary information. But the viewer also follows them into a mock clinical consultation where they undergo tests for memory problems. Their failures here are immortalised for them to watch again and again.
The distribution of jobs in the restaurant seems to ensure that the least disabled volunteers do the food prep, while those whose problems cause the greatest social difficulties are front of house. I didn’t find it entertaining at all to see Roger and Jacqui trying to perform roles that they were basically unable to do. The programme then focused patronisingly on their small successes as if these were going to change their lives. But no employer would risk taking on Jacqui or Roger in a restaurant setting.
We all want people with dementia to be free to work if they so wish. But, like other disabled people, those with dementia are restricted in what they can do. Employment is made more difficult for them by the progressive nature of dementia. A job therefore needs to be tailored to abilities, and adequate support provided. There was no acknowledgement of this obvious fact.
Complex, language-based jobs quickly become unsustainable in dementia, but a person who is willing to accept less skilled, lower-paid work can be placed. The reason why the programme’s participants are not working may have less to do with societal attitudes than with financial disincentives, if the wages are lower than the social security benefit entitlement.
Patronising and shaming people with dementia is not going to improve their self-esteem in the longer-term. And objectifying people with dementia is all too easy. At one point, the restauranteur asks a volunteer 'What are we going to do with Jacqui?’ when Jacqui is standing in front of him.
Of course people are thrilled by the exhilaration of starting a restaurant and the buzz of making a TV programme. But how will participants feel when they are left with the recorded reminder of their own shocking decline? What will they do with the knowledge that everyone who knows them will have watched their mistakes? Peter sheds tears when asked to write an email – something he stopped doing years ago. This is interpreted as triggering an unhappy memory, but I think they are tears of humiliation.
There are some valuable messages contained in the interviews, such as it’s important to have a purpose in life, and people with dementia are valuable. But actions speak louder than words, and these messages are negated by what the programme shows us: the exploitation of vulnerable people for entertainment. What’s wrong with this programme is that nothing can justify the shaming, objectification and humiliation of volunteers in The Restaurant That Makes Mistakes.
Nicci Gerrard is a well-known journalist, author and campaigner. Her book about dementia is an elegy for late father, who had dementia in the last years of his life. She has researched it thoroughly, speaking to many people living with dementia and their families as well as to a range of clinicians and dementia researchers. As well as this, she draws on literature and art.
John Gerrard developed dementia gradually so that it was impossible to say when its onset was, especially as he was somewhat absent minded to start with (though well connected with and knowledgeable about nature). His state declined rapidly following a hospital admission which for various reasons was extended to five weeks. He was discharged a shadow of the person who had been admitted. The shock of this change led his daughter to launch John’s Campaign, which advocates for family carers to have the right to be with their loved ones in hospital and not to be restricted to brief visiting hours.
The book follows the journey of dementia through its chapters, especially once the author starts to discuss the process and impact of diagnosis. Thus we move from the general business of ageing through such matters as adapting to the diagnosis, how dementia affects carers, the importance of home, hospitals and the end of life. There are many insights both from Nicci Gerrard’s own experience and from the people she speaks to. One chapter, for instance, is about the issue of shame – how people, both those with the condition and those around them, often have a period of heightened and potentially painful self-consciousness, a feeling of being at risk of being exposed. There is a lot of embarrassment in the early stage of dementia, it appears.
Nicci Gerrard takes a stance between undue pessimism about the unrelenting course of dementia on the one hand and facile acceptance of living well with dementia on the other. She describes the experiences that she meets head on. This is fairly uncompromising material and challenges the reader to think about what dementia is about and how it challenges the integrity of a person’s nature.
By the time of death, however, matters are more peaceful. Following death, there are a variety of ghosts of the departed person that one can call to mind, seeing them at different stages in their life. This ability to move about in time gives a longer perspective of the person’s life that acts to promote restitution and to put the years of dementia into context, in a way that was perhaps impossible during the heat and dust of caring for them. So what does dementia teach us about love? I think that the book maybe leaves this question open, though it addresses well what bereavement teaches us.
What Dementia Teaches Us about Love by Nicci Gerrard, published by Allen Lane, 2019.
The somebody is Wendy Mitchell as she was before she was diagnosed with Alzheimer’s disease at the age of 58. She was a highly active, well-organised NHS manager with a responsible job, able to deal with nursing rotas for a hospital in her head. The dementia first declared itself with a stroke-like episode that came out of nowhere. Over time after this, she became aware of fluctuations in her ability and a sense of fog in her mind. Remaining at work required being super-organised to stay in front of her tasks though, in the end, even she was unable to keep up.
By the time she received a diagnosis, Wendy Mitchell was not surprised though even so it had a big impact. She documents various things that she had enjoyed that came to an end – running, baking and driving, for instance. However, her organisational talents have helped her to remain independent. This may appear effortless ('you haven’t changed’, people frequently say to her) but actually it is at the cost of a big effort. For example, to go on a train journey requires attention to every detail of the route, including obtaining pictures of landmarks that she will pass between arriving at the station and her eventual destination. She needs to set alarms on her iPad so she doesn’t leave her suitcase on the train. She also talks eloquently about how she is prone to paralysing anxiety, which of course makes her cognition worse, and how she has learned to deal with it. Mainly this is a matter of letting it pass, but also of seizing the moment when she is feeling capable.
It behoves us as health professionals to bear in mind what a small part we play in the course of someone’s life with dementia. Most of it is spent doing ordinary things, time with family and friends, adjusting to small changes as they happen. This book reflects that – there is not too much mention of contact with the NHS. And what there is salutary. There is little on offer beyond the diagnosis, and the NHS as her employers were a great disappointment as the only option on offer appeared to be health retirement with no discussion of adaptations that could have been made to supprt her at work.
The Wendy Mitchell she used to know had been quite a private person. She would listen to others’ troubles but rarely venture her own. After dementia, this changed as she made the decision to go for everything that was offered. This included participating in research, speaking at conferences, and in the end writing a best-selling book. She reflects on how dementia made this possible.
Finally, the book is a declaration of love for her two daughters. She is determined that they will not be her carers. She has been attentive to them all their lives and she continues to be so, though she also has to accept that she needs their support too. The front cover shows them as little girls on Blackpool beach. One can imagine Wendy insisting on the picture being included.
Somebody I Used to Know by Wendy Mitchell. Published by Bloomsbury, 2018.
J.A.N. Corsellis and his colleagues are one of the many contemporary heroes in the field of neuroscience. Amongst their many contributions there’s one that stands out the most. They have helped to promote our understanding of trauma-related neurodegeneration and made us appreciate the thin line between a robust and healthy brain, and a fragile and injured brain. Today, the legacy of Dr. Corsellis, his Corsellis Collection of Brains, which is one of the largest in the world and the largest in Europe, is used to assist epilepsy research in the UK. Surely, despite its main objective, this project will have its connections and contributions to other diseases of the brain and nervous system. Praise the interdisciplinary nature of science!
In 1973, Corsellis and colleagues investigated the brains of 15 retired boxers, identifying cerebral changes that have been shown to underlie the increased risk of developing dementia. Today, it is known as chronic traumatic encephalopathy (CTE) or popularly referred to as dementia pugilistica. In the early 20th century a more derisive and biased term has been initially used to describe boxers whose heads had gone through a bit of trouble – the so-called punch-drunk syndrome. The name really speaks for itself, but today it comprises a wide variety of victims, ranging from professional athletes to war veterans to cyclists who couldn’t care less about wearing a helmet. One of the prevailing theories that explains the pathophysiological manifestation of trauma-related neurodegeneration is the progressive neurodegenerative tauopathy, which is the aggregation of destructive tau protein seen in many other forms of neurodegenerative disease such as Alzheimer’s. However, the evidence is not certain and more research is required. On the other hand, what is certain is that traumatic brain injuries are long-term, dormant threats to life and many people are unaware that their concussion might be a silent killer in the making. In the US alone, there are approximately 5.3 million people with TBI-associated disabilities (traumatic brain injury) and this number will continue to grow if we don’t start to appreciate the severity of this condition.
Fortunately, CTE and its consequent detrimental effect on the brain, namely the possibility of dementia, are increasingly becoming a worldwide concern because of its growing public attention. Its rising awareness is especially evident from the real experiences told by athletes and shared by ordinary people on social networks. The late boxing legend Muhammad Ali is one notable example, though he never allegedly admitted it to be true. Nevertheless, the likelihood that he contracted Parkinson’s disease after repetitive TBI is very high. A 2015 dramatization “Concussion” based on Dr. Bennet Omalu’s investigation of CTE in American football players is yet another piece of evidence that communicates the gravity of CTE research and the need for its awareness. Certainly there are other cases, which deserve to be mentioned, but there’s one case that I would like to go over because it relates to me on a personal level.
Not so long ago I came across a YouTube clip of a former ice hockey player (which in fact served as my inspiration to blog about this topic), with which I have connected emotionally through my long-standing relationship with ice hockey. The link to the video is down below if you’re interested. Daniel Carcillo is a former NHL player who suffers from CTE. He has put his life story out, sharing his path to rehabilitation and revealing what it means to live with this condition. His story is highly personal to me because I am an ice hockey player myself and I have a close friend who has had several on-ice accidents involving his head. I am lucky that when I played junior hockey the only injury I’ve suffered was a broken thumb. It’s a completely different story with my friend whose concussions might lead to bigger problems. He’s only 21 years old and understandably it’s not something that he worries about. In fact, if I have stayed in Latvia to continue my ice hockey career instead of joining university I would have been most likely oblivious as well and wouldn’t know any better about the bigger picture of getting hit in the head. I showed the video to my friend and he instantly became unsettled when he heard Carcillo say: “Old-timers with dementia, Parkinson’s disease, you’re 80% more likely to contract these diseases if you have three or more concussions.”
But there’s hope and now my friend knows it. The neat thing about Carcillo and other athletes who decided to tell the truth about CTE is that thanks to them sports organizations are now aiming to educate and make people more aware about the consequences of repetitive TBI. It’s not that before it was different, but now this information has become more accessible to a layperson and change is finally taking place. New regulations are being introduced in contact sports and more emphasis is being directed towards human health and safety. Hopefully, with greater recognition of CTE as an underlying cause of dementia, clinical research will in turn receive more endorsement to try and fight this disease in its earliest stages. Even if the unpredictability and inevitability of Rota Fortunae exists, the closer we get to the truth, the greater our odds are, and raising awareness might just be one of the first things we can do to get there.
CTE Awareness Foundation: http://stopcte.org/
The link to the video: https://www.youtube.com/watch?v=K4BySsH6FgQ
References:
Castellani RJ and Perry G, Dementia Pugilistica Revisited, J Alzheimer’s Dis. 2017; 60(4): 1209–1221. Doi: 10.3233/JAD-170669.
Smith DH, Johnson VE and Stewart W, Chronic neuropathologies of single and repetitive TBI: substrates of dementia? Nat Rev Neurol. 2013 April; 9(4): 211–221. Doi: 10.1038/nrneurol.2013.29.
https://www.researchgate.net/publication/18439689_The_aftermath_of_boxing
https://www.epilepsyresearch.org.uk/research_portfolio/new-purpose-for-historic-epilepsy-brain-collection/
I love food, as I’m sure a lot of people do. Whether it be the smell of your favourite meal or the memory of cooking with a loved one, the majority of us would call food an experience rather than something we’re told we have to do 3 times a day. 3 years ago I committed to a vegetarian diet in order to regain a bit of control over my health. I didn’t realise it would completely reshape my relationship with food. I was even more surprised that I began to enjoy it. It’s only recently that I began to investigate some of the health benefits of certain diets. Here I’ll break down what scientists have found about diet and its impact on a person with dementia.
Over 25 years ago, scientists discovered that people on vegetarian diets experience the symptoms of dementia later in life. Meat eaters may be twice as likely than vegans to be diagnosed with dementia (Giem et al 1993). Research has been found that meat-free diets can help reduce blood pressure and the levels of fat travelling around the body. Also, vegan/vegetarian diets could be considered beneficial as they are free from the high salt content found in processed meats (de la Monte 2014). However, it is important to note that salts are present in all preserved foods – so whether you are eating preserved vegetables or preserved meats you are consuming a high level of salt. A key take-home message is that the quality of food is very important to your health.
It is also known that meat-free diets make a person more likely to suffer from a lack of vitamin B (Osimani et al 2005). A lack of vitamin B can lead to cognitive problems that can contribute to dementia if left untreated. Interestingly, a pescatarian diet (a diet free of meat but based on fish, fruits and vegetables) can reduce the severity of cognitive problems in someone who has already been diagnosed with dementia (Willams and O’Connell 2002).
If the ‘perfect diet’ does exist, we haven’t found it yet. What we do know is that even though you may not be what you eat, what you eat can have a large impact on your health. That being said, before deciding to take the drastic change in diet to veganism, it is important to remember that moderation is very important in order for lifestyle changes to be healthy and influence a long-lasting and positive change. Making your diet is balanced and appropriate for your lifestyle is more important than following any trends. Be sure to consult medical professionals before committing to drastic dietary changes.
For further reading on the subject, please visit: https://www.alzdiscovery.org/cognitive-vitality/blog/vegetarian-and-vegan-diets-for-brain-health
References
Giem P, Beeson W, L, Fraser G, E: The Incidence of Dementia and Intake of Animal Products: Preliminary Findings from the Adventist Health Study. Neuroepidemiology 1993;12:28-36. doi: 10.1159/000110296
Risk factors for dementia factsheet 2016, Factsheet 450LP Alzheimer’s Research UK Accessed 28.12.18 https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_risk_factors_for_dementia.pdf
Osimani A, Berger A, Friedman J, et al (2005) Neuropsychology of vitamin B12 deficiency in elderly dementia patients and control subjects. J Geriatr Psychiatry Neurol 18:33–38. doi: 10.1177/0891988704272308
Williams JH, O’Connell TC (2002) Differential relations between cognition and 15N isotopic content of hair in elderly people with dementia and controls. J Gerontol A Biol Sci Med Sci 57:M797-802
de la Monte SM (2014) Type 3 diabetes is sporadic Alzheimers disease: mini-review. Eur Neuropsychopharmacol 24:1954–1960. doi: 10.1016/j.euroneuro.2014.06.008
It was back in January that I first blogged here about the Challenge Dementia Prize. Launched by Essex County Council, the prize was a national search for products, services and technologies that could help people living with dementia to remain connected to the people and places around them.
I don’t have a professional background in dementia or social care. My knowledge was based purely on personal experience, like so many others having grandparents that have lived with dementia. So like all good projects, we began by listening to the people that know the issues best, listening to people living with dementia, their families and professionals from across the sector to come up with a challenge statement that was easy to understand and would inspire a wide range of people to share their ideas.
And inspire it did. The prize launched in January and saw 71 entrants from organisations, groups and individuals. The 71 became nine through a judging process.
Our nine finalists, supported by a small micro grant and access to a range of experts including Alzheimer’s Society, PA Consulting, techUK and the University of Essex worked to further test and develop their ideas. Our advice to them was to hold their ideas lightly and be willing to adapt and iterate based on the feedback they heard from those living with dementia. And this is exactly what they did. Our finalists were as diverse as the ideas that they brought with them – ranging from large established tech firms and academics to smaller social enterprises and one individual just starting secondary school. However they all shared a determination to make a positive impact and personal experiences to draw from.
And so to the winner. A panel of expert judges selected a winner to receive a £100,000 prize to further their idea. Innovative, novel and scalable were just some of the words used to describe our winners – The Wayback. – a virtual reality film series that completely surrounds the person in familiar sights and sounds from the past. This means, that rather than relying on one or two triggers, such as a piece of music or a photograph, as most reminiscence work does, they are able to place literally hundreds of potential memory triggers in every scene, enabling people to use the reality of the past to have meaningful conversations in the present. The Waybacks ambition is to share these films with as many people as possible helping them to remain connected to the people around them and maintain their identity. My hope is that whilst there could only be one winner, all nine finalists will continue with their quest to develop solutions that will work now and for future generations, improving the lives of everyone living with dementia.
So what have I learnt over the past year of working on Challenge Dementia:
1. People have been so very generous with their time and experiences – wanting to get involved at all stages of the process to make it the best it can be. Thank you to everyone;
2. The finalists projects are as good as they are because they have seized the opportunity to get out and talk to people and they have all held onto their ideas lightly – adapting the idea time and time again to respond to user feedback; and
3. Shining a light on an issue from a different angle can be powerful. For example, The Wayback team are a group of passionate filmmakers, creatives and producers. The Challenge Dementia Prize has created a real opportunity to engage with people we wouldn’t otherwise reach out to as a County Council. Encouraging them to think about how people can live well with dementia and acting as a catalyst to bring ideas to life.
I’m excited to see how all nine finalists go from strength to strength.
To find out more about the Challenge Dementia Prize visit: https://challenge-prizes.essex.gov.uk/.
To find out more about The Wayback visit - http://thewaybackvr.com/
I arrived in London for this event as a sceptic about research as my remit is the here and now.
I went for curiosity and to see what was actually happening out there in the world of research.
I entered the hall at the University College of London and was greeted by an array of trestle tables and backdrops. I noticed the tea and coffee of course.
I wandered around the tables and mingled with the ever growing crowd that had gathered.
I discovered from the off the seriousness of the researchers and its importance of research to them. They were all engaged in earnest conversations with those who had attended.
I had earnest chats every stand with the people manning them. I learnt from the off what I had suspected all along. A cure or even a glimmer of hope is still at least 5-10 years away. Everyone was open and honest on that point.
The array of research on display varied from surveys to protein seeding to brain banking to visual hallucinations in dementia and Downs Syndrome.
Here is a brief overview of each.
The most impressive to me was the study by Insight 46. This is a ground-breaking study following the lives of people born in the same week in March 1946 (the maternity survey) through to a few years back. It is hoped that by mapping the lives out and seeing the changes in the lives over a lifetime that possible indicators for early detection for dementia will flag up.
I then went to see protein seeding in a test tube works. Very complex but very interesting. Proteins are taken for a select amount of people who are living with dementia and then for a similar amount who have not got the disease. The proteins are placed in a test tube to see the patterns of growth. It is fascinating to learn that in most cases the proteins multiply in a similar like pattern. The process reminded me of Lego. It is hoped that by seeing the results in a test tube the process will enable scientists to see how the proteins turn into amyloids that cause dementia in the brain (https://hamptonresearch.com>growth_101).
A little-known fact outside of dementia are is the link between Downs’ syndrome and Alzheimer’s. I chatted to some lovely people who are researching this field and how they want to use the known genetic origins of DS to understand more about the genetic causes of AD (https://www.ucl.ac.uk>about>about-ad).
I was particularly impressed by the table looking into building the brain in a dish. They look at neurons down a scope to see the earliest signs of what’s going wrong in the brain. I looked at a scope on a screen and saw complex tangles that highlighted the formation of brain disease: stem cell research.
I tried to build a brain from several pieces and did it in 4 mins 25 secs which sadly for me was below the average time.
There were several scientists on hand to explain the process they use in hunting for new drugs to fight the disease. It was interesting to see the different apparatus used.
The last table I went to are people studying the interactions between memory, attention and perception and how this will help them to understand hallucinations in both Parkinson’s and Dementia with Lewy bodies. I was shown a black and white image and was asked to work out what it was. I got one part of the image correct but I guessed at the rest. It was intriguing to see how the mind relates to an image you can’t make out, so you use imagination and memory I paused for tea and scone halfway through and tweeted live from the gathering several times.
I finally left a little more enlightened on research that I was before going and although my remit on the here and now still stands, I am more of a research fan than before.
Dementia is certainly a growing social concern, and is increasingly discussed and portrayed in newspapers, government speeches, policy documents, films, books and more. Despite this, a lot of misunderstanding, fear and stigma still surrounds the experience of dementia, and so when it came to choosing a topic for my Masters dissertation, and later my PhD thesis, I wanted to explore the interaction of public conceptions with how dementia is represented. I’m particularly interested in how people living with dementia, and dementia more broadly, are represented in society through the words, format choices and images used. The importance of such representations is frequently overlooked, yet they have strong accumulative power, and can provide valuable insights into underlying attitudes and ideologies about dementia.
For instance, in a quick search for images of dementia, taking a look at the first ten pictures to appear indicates that the dominant view of dementia focuses on deterioration of a person, through decreasing brain function (see the pictures above). The idea seems to be that someone with dementia crumbles away. Consider how this makes you personally feel about dementia, and about others who live with it. Do presentations such as these help contribute to fear and stigma, and the consideration (and often treatment) of people with dementia as non-people?
As well as deterioration of self, a biomedical focus is also evident, displaying types of dementia, risk prevention strategies and a comparison of physical changes in the brain for a stroke and dementia. There are certainly no photographs of people with dementia enjoying life, spending time with family and engaging with their environment, despite the recent emphasis on the fact that people can live well with dementia. Suggestions for other search terms link dementia to hearing loss and memory loss, but also to depression, delirium and psychosis, further promoting a fear-inducing narrative of dementia, rather than, for instance, signalling avenues of support. These linguistic and visual choices not only reflect, but also help shape, the way we think about dementia – making them a valuable avenue for change, to reduce fear and stigma, and improve the experience that people can have of dementia.
For my Masters dissertation, I compared two short videos for different charity campaigns, Alzheimer Society’s Dementia Friends (https://www.youtube.com/watch?v=TuPWBlmD5Tk&t=11s), and Alzheimer’s Research UK’s Santa Forgot (https://www.youtube.com/watch?v=Y9pd6F7Wojk&t=8s), to consider how they both visually and linguistically represent dementia. Through interviews, I also investigated how the videos were received by members of the public, particularly how they reflected, reinforced and challenged the participants’ dementia perceptions. This was a bit like dipping my toe in the water, and raised as many questions as it answered about dementia representations and perceptions.
Building upon this, for my PhD, I hope to explore how dementia has been portrayed since 2012 to the British public, when the World Health Organisation made dementia a public health priority, and David Cameron challenged England to become world-leading in dementia research and care. How do politicians, governmental departments and non-profit organisations engage with popular perceptions of dementia? What relationship do they have to the presentations spread throughout the British press? What do members of the public, including people with dementia, think of some of the linguistic and visual portrayals in my study? And how can dementia representations be improved? These are some of the many questions I hold going into the first few weeks of my PhD, and I’m excited to find out where these questions will take me.
The labels we use to describe a person can have a profound impact on our attitudes towards that individual, and resultantly how we might treat them.
My PhD research has recently been examining the most common labels used in the UK news media to describe people who have dementia. In a corpus of five years’ worth of news articles from national newspapers that featured ‘dementia’ in the headline or first paragraph, I have explored how the word ‘dementia’ is related to individuals, and the impact this has.
The most common way of describing people with dementia in my data was, somewhat unsurprisingly, ‘people with dementia’. This has been called ‘person-first language’, because the person comes before the illness or disability, and no opinions or stereotypes are encoded about the condition. It is fairly neutral terminology, but in my data I have found that it can still be used to impose judgement and incite fear. A fifth of all instances of ‘people with dementia’ in my corpus involved some sort of quantification. For example:
‘There are about 850,000 people with dementia in the UK, forecast to rise to one million by 2025’ (The Times)
‘Our population is ageing, and numbers of people with dementia are expected to soar to over a million in the next decade’ (Daily Mail).
I would argue that these attempts to quantify ‘people with dementia’ generate fear and anxiety; there is a sense of an immeasurable, imminent crisis with this language of ‘forecasting’ and ‘soaring’ in the near future.
This sense of fear around the condition is corroborated by the second most common label for people with dementia: ‘dementia patients’. This was normally in the context of hospital admissions or clinical trials, as in ‘Scientists hope to start trials in dementia patients after rat study suggests drug reduces brain inflammation and encourages neuron growth’ (The Guardian). The label ‘dementia patients’ constructs people with dementia as passive and voiceless, because they are acted upon by others (‘scientists’). Further, they are reduced to body parts and pathological processes (‘brain inflammation’, ‘neuron growth’), foregrounding the condition over all other aspects of the individual.
Similarly, there was a tendency to describe people with dementia as ‘dementia sufferer/s’. This label was used when discussing institutional and physical abuse of people with dementia, as in ‘Dementia sufferers have been left to starve or live on biscuits, with others left in soiled sheets and dirty clothes, according to a damning report warning of failures to care for the vulnerable’ (Daily Telegraph). Here, people with dementia are construed as inherently vulnerable and victims. The label ‘dementia sufferer/s’ is frequently surrounded by language that emphasises frailty, old age and an inability to speak for oneself.
Labels that promote a neutral or positive attitude (language such as ‘people living well with dementia’) are virtually absent in the data. Where they are used, they occur in the direct speech of charity representatives and advocates (as a side note, rarely are the voices of people with dementia heard representing themselves). Labels that challenge stereotypes could present a view of dementia that is more than one of passivity and victimhood, but evidence from this survey of the contemporary British press indicates that there is still a way to go before this type of language is adopted in the news media.
