Whether they’re calling it a “dangerous epidemic“, the “Silver Tsunami” or a “living death“, much reporting of dementia in the media is full of negative language. It’s quite rare that we hear positive stories about dementia. It’s even rarer that we hear about all the things that people with dementia are still capable of as opposed to the things they can no longer do. However, changing the stories and language we use is exactly what is needed to change the public perspective of people living with dementia. In this article, Alex Owen-Hill talks to novelist and PhD researcher Alison Summers about why language and story can help us to realise that people with dementia are not “gone”, they have just changed.
If you were to hear that a friend had lost their legs and now used a wheelchair, you wouldn’t stop going to see them, would you? Although there is still much to improve about how people with physical disabilities are viewed and treated, it is fair to say that great progress has been made. In general, people now realise that the loss of a physical ability does not mean the loss of a person. However, for people with a diagnosis of dementia, that can be exactly what happens. The day after diagnosis, a person stops being a person and starts being a burden.
But, it doesn’t have to be like this. We can improve our own perceptions by recognising that a person with dementia has only changed, but are still here and able to live a full life. One way to change those perceptions is through creative literature.
Not One Dementia But Many Dementias
The word itself, “dementia”, implies that it is only one thing. However, dementia is a collective term for a related group of symptoms which often include memory loss, confusion and difficulties with language. They are caused by the gradual degradation and shrinking of certain parts of the brain. The various types of dementia each impact different parts of the person’s personality and/or memory depending on which areas of the brain are affected. Alzheimer’s disease, the most common and well known cause of dementia, primarily affects the memory. However, the second most common type, vascular dementia, can variously affect the person’s planning skills, language skills and/or speed of thought. It all depends on what is causing the dementia.
A brain in late stages of dementia has visible gaps and holes, blocked blood vessels, degenerated nerves or other physical defects. Therefore, in some way, dementias are similar to a physical disability: part of the body (in this case part of the brain) is physically damaged and, as a result, the person is not able to use that part properly. The challenge with dementia is that we cannot see the physical damage to the person’s brain. From the outside, the person might look normal, but they will seem to be acting strangely. However, it is important to realise, especially in the early stages, that people with dementia still have a lot of their brain which functions normally. They are still capable of living a full and happy life, if we acknowledge their strengths.
Malignant Positioning – The “Oh, (s)he’s one of them” Effect
“The day before your diagnosis, people are treating you as a normal person.” says novelist and researcher Alison Summers. “Before they’re diagnosed with dementia, many people put up a very good front and have ways of coping with the stage they’re at. Then, as soon as somebody hears “Oh, Fred’s got dementia” they start just discounting anything that Fred says. They talk over (1) Fred, they make decisions for him without consulting him and Fred eventually just withdraws and gets worse. It’s basically a Human Rights issue. Fred should be allowed to choose as long as he’s actually able to choose. Often people with a diagnosis can still live very well for ages, if they’re supported.”
This situation, which is common for many people with a diagnosis of dementia, is called “malignant positioning.” Alison’s PhD – titled “Towards a Literature of Dementia: Resisting Malignant Positioning Through the Use of Facebook as a Memetic Narrative Device” – looks at how we can lessen the effect of this malignant positioning by changing people’s perspective of dementia through the creative art of fiction.
“A community that allows people with dementia to live well is going to be a community that everybody enjoys.” says Alison. “People in wheelchairs, deaf people, everyone will benefit because it’ll be an aware community and there will be people who take the time to help. So, yes, it’s an “ideal community” but if we manage to get things going well for people with dementia, things will be going well for lots of other communities as well.”
Dementia in Fiction: A Step Towards Empathy
Novels like Elizabeth is Missing (2014), We Are Not Ourselves (2014) and Still Alice (2007) – which was made into an award winning film in 2014 – have recently started to explore the issues of dementia from a dramatic perspective. Alison believes that this trend is vital to help the public understand the condition.
She says: “My feeling is that the fiction that’s written about dementia is so much better than the non-fiction that’s written about it. A lot of the people who write the non-fiction accounts normally wouldn’t be writing anything at all. Many are badly written and so are only read by people who are already interested in dementia.
“It’s really important to get creative people involved in telling the story of people with dementia because it’s more interesting for the reader. I think that fiction creates far more empathy between the reader and the character with dementia than non-fiction does. I wanted to write an entertaining story so that, hopefully, more people would read it; people who don’t necessarily have a relative with dementia. I’m also trying to make it less tragic and slightly positive.”
Inside the Head of a Person with Dementia
It is challenging for a writer to create a character with dementia with whom readers can empathise. Although we might know someone with dementia, most of us have very little personal experience which is even remotely comparable to actually having dementia. It’s not easy to imagine living with a brain that’s degrading. Even experiencing her own sister’s dementia, Alison found it hard to step into the shoes of her main character, Catherine.
“It was really difficult to think what it was like.” she says. “The only experience that I’d personally had – that I thought might be like it – was once when I’d been travelling for 24 hours with no sleep. I was trying to work out what time to set the alarm to get up the next day and I just couldn’t do it. I simply couldn’t do it. It was though I had lost that bit of my brain. So, I tried to use that experience as “a way in”. But, I’m very conscious that people with dementia have got a lot more “going on” than appears on the surface so that’s what I’ve tried to include, in particular at the end of the novel when I’m talking in Catherine’s voice.”
Dementia is not simply about a loss of memory, a fact that is very clear with the type of dementia that Alison has chosen to write about. Catherine has Pick’s disease. This rarer form of early-onset dementia is a type of behavioural frontotemporal dementia and primarily affects a person’s personality long before it affects their memory.
“Alzheimer’s seems to be more about memory loss than changes in behaviour.” says Alison. “I mean, the person’s behaviour changes as a result of losing their memory. But, Pick’s disease starts off as behavioural and is not to do with short-term memory so much.
“My motivation for writing the novel was because my sister was diagnosed with Pick’s disease. Once she’d got the diagnosis, she said to me “Ali, I really hope you get some writing out of this hideous disease” so I thought “Right, well that’s an instruction.”“
A Change of Personality
One of the biggest changes of behavioural frontotemporal dementia (bvFTD) is the way that it changes people’s personality. In the early stages, the dementia removes their inhibitions, their “filter” on what is socially acceptable behaviour. It also makes them apathetic (feel like they “don’t care”) and become less sexually inhibited.
“I feel like I’m psychologically intact” said FTD blogger Howard Glick in an interview in 2012 “[but I’m] aware that I’m unaware. My filter is going.”
In his blog posts, Glick often describes situations where his lack of social filter causes him to say the wrong thing, alienate his friends and cause himself grief. He has summarised the “FTD Cocktail” as a recipe containing: “1 part Hypersexuality, 1 part No Filter, 1 part Apathy = Inappropriate sexual remarks, comments and behaviours that the FTD’er is unaware of.”
For Alison’s sister, in the early stages of her dementia, this meant that her personality was flipped upside down.
“She changed from being very poised and controlled, very stoic, to being all over the place.” says Alison. “She had always been really polite and tactful, so the first time she said “Piss off” to her husband I couldn’t believe it! But, in a funny way, she was able to be much more free. She took great delight in thinking about her symptoms. She said things like “Oh, apparently I’m going to be sexually inappropriate at this dinner we’re going to!”
“Once, we were in a Chinese restaurant and I was chatting away to her. She kept turning round and eavesdropping on everybody else’s conversation. I turned her head towards me and said “You’re with me” and she said “Well, you’ll have to be more interesting then, won’t you!?” It was weird because, before she was ill, I used to notice when she wasn’t listening to me. With the lack of inhibitions she was telling me exactly what she thought!”
A changing personality is surely much easier to comprehend than the amorphous black cloud that most people consider as “dementia.” Although it’s impossible to know exactly what it’s like for the person themselves, finding out which parts of the person’s personality (or memory) are changed can allow us to understand the person’s otherwise strange behaviour. By taking an interest in the uniqueness of the person, we can focus on those important parts of their personality which still remain intact. Alison admits that this has been hard for her as her sister’s dementia has progressed further.
“Gradually, she’s just become less and less responsive and now she doesn’t say anything. She’s gone back to being stoic again. Every time I look at my sister now I just mourn… the other sister. My brother, interestingly, has a completely different attitude. He says that the sister that we now have is like his little sister used to be. Of course, he’s older than she is so he has the memory of the little sister whereas I’ve only got the memory of the big sister that I used to look up to (3).”
Changing How We Interact
It seems that treating people with dementia with the respect they deserve means learning how to interact with each person individually. It means taking an interest to find out how to communicate with them, even if they can’t respond with words.
“We’re so focused on cognitive abilities and being able to talk to each other, but non-verbal communication is really important too.” says Alison. “That’s what my brother’s really good at. He can see changes in my sister that I can’t see, like when she’s smiling at me, because he looks after her and sees her every day.
“Body language is important; even if someone looks blank, it’s there. It’s like when you’re in a foreign country and you want to buy something, but you don’t know the language. You point and you make friends with people even though you haven’t got the same language. “
By taking the time to understand dementia, whether it be by reading creative fiction or changing how we interact with someone we know, Alison believes that our communities can improve the lives of people with dementia. By learning to focus on their strengths, we can stop thinking of people with dementia as “gone” and start recognising that they can still lead happy, fulfilling lives.
“I think that dementia just a different way of being, actually.” says Alison. “Some people are scatterbrained. Some people are extrovert. Some people are autistic. I think that it is another line on the spectrum of being a human being. Yes, it’s caused by a physiological disease and, yes, there are negative aspects of dementia; but, only looking at the things that people lose in dementia means that nobody notices the things that they can still do, that they still enjoy. You need to not make assumptions and you need to take everybody as an individual.”
- Definition: to discuss, to consider.
- Example: “They talk over Fred, they make decisions for him” “Hablaban de Fred, tomaban decisiones por él“.
- Translation: Hablar de, considerar.
- Definition: to cause (something) to be or become (something else).
- Example: “The dementia renders her incapable”. “La demencia le convierte en incapacitada“.
- Translation: convertir, transformar.
- Definition: (v.) to regard with admiration or respect.
- Example: “[…] the memory of the big sister that I used to look up to.””. “El recuerdo de la hermana mayor a la que solía admirar“.
- Translation: admirar.
Contributors to this article:
Author: Alex Owen-Hill.
Editor: Alex Owen-Hill
Use of English for Spanish-speakers: Jordi Albacete.