Reading into Dementia

Dementia is cruel and incurable, and affects a large proportion of our ageing population, combining physical, neurological and social deterioration. But sometimes, we rush to pity … when it's empathy we require.

Melanie Joosten, an author, social worker and researcher, argues that a productive path to empathy and understanding for those affected by dementia lies in fiction — specifically, in its ability to place us inside the mind of another.

Image: by Jon Tjhia

The endurance of self beyond the mind

‘I’m ridiculous.’ Protectively clasping a diary, Helen shrugs in defeat, her smile wavering. ‘I’m getting more and more ridiculous.’

While her husband and I talk, Helen opens the diary and runs her finger down the page to find my name written into Thursday afternoon. She nods, satisfied, then closes the diary and gives me her full attention. A moment later she opens the diary again, runs her finger down the page, and nods.

Dementia irrevocably changes a person, but the person is still there.

Dementia is unkind. Taken from the Latin, de means ‘without’ and ment is from the masculine for ‘mind’; dementia robs a person of the thing we associate most with our very being: our mental capacity. Dementia is not a single disease, but a range of illnesses affecting the brain and its function, causing difficulty with memory, understanding and reasoning. Medication only makes dementia waver in its determined march of decline; it refuses to halt or retreat.

Each week there are more than 1,800 new cases of dementia in Australia: approximately one person every six minutes. Affecting close to one in ten people over 65, it is our third leading cause of death, and there is no cure. The rhetoric is frightening, but while fear-mongering might cajole governments into investing in research and encourage the public to be generous with their donations, how does it affect the people living with this disease, and our treatment of them?

To improve the care and experience of people with dementia, we must move from sympathy to empathy, and the only way to do that is to grow our understanding.

Some say the only blessing of dementia is that a person’s awareness of its effect slowly fades with the disease’s progress; it is the surrounding family and friends who are left to contemplate what is lost. But what is often forgotten is that one can live with dementia for a long time. A person can still experience the emotions they always have; they can find meaning in the present, the past and the future. Dementia irrevocably changes a person, but the person is still there.

Too often, a dementia diagnosis is unintentionally used as a way to rob a person of their identity. In the name of safety, ease and efficiency, aged care staff and families often assume a person with dementia is unable to make their own decisions and so relieve them of their agency. Decisions about when to eat, what to wear and how to act are taken out of their hands when a person starts to behave in a manner deemed inappropriate. The extreme of this is seen in the effort to curb what are known as ‘difficult to manage’ behaviours – things like agitation, wandering, swearing and delusions.

It is estimated that up to 80 per cent of those with dementia are on psychotropic medications to counter their ‘challenging’ behaviour. These medications have serious side effects and studies show they often don’t even work, but the most disturbing aspect is that these ‘behaviours’ are often the person’s way of communicating their fear and discomfort. For example, many people with advanced dementia are given sedating medication, subduing their identity and natural responses, because they become aggressive when a someone tries to shower them. But as Allen Power, an advocate for empowering people with dementia, explains, ‘if a stranger started taking your clothes off, you’d probably shout at them too.’

After receiving a dementia diagnosis, many people are subjected to a social death well before the biological one that will take them from this world. As they become less able to communicate and take part in our fast-paced world, they are shut off from society. Part of the problem is that everyone’s experience of dementia is different, and as the disease progresses it becomes increasingly difficult for the person concerned to communicate what it is they’re going through. The family and carers around them try their hardest, but are often left perplexed and frustrated as it becomes more difficult to anticipate how their loved one might be on any given day.

Image: Keys, from IRISS Photo Collection (CC BY-NC 2.0) https://www.flickr.com/photos/openlx/3693717367

(IRISS Photo Collection / CC BY-NC 2.0)

Dementia is not a simple forgetting of where you put the car keys – it’s holding them in your hand and not understanding what they are. It is memory loss often coupled with a confusion of time and place, and the result can be to be gripped by feelings of persecution and fear. As a researcher, I’ve spoken with many people who are at different stages of the disease, and their experiences are wildly different. Some can no longer remember names and faces of people they know well; some are frustrated that television becomes unintelligible as it’s impossible to hold all the information in their mind. Some people forget to eat, some panic or become aggressive to people they love. Sometimes I take a sip of my tea mid-conversation and find we’re back at the beginning: the exact same questions, the very same genuine interest and engaged delight in my answers. It’s bewildering to repeat a conversation within moments of it ending, like we are actors stuck in a relentless cycle of rehearsal. I see how easily this could turn into irritation in the space of a day - questions asked over and over, my answers not providing any closure. Yet in these instances I have to remind myself that the frustration is all mine - for the person with dementia, the conversation is as fresh as it was the first time, and the bewilderment and irritation is all on my behalf.

It is, of course, much more difficult for family members to accept the changes that dementia brings to their parent or partner than it is for the care staff (or researchers) who encounter these people in a brief moment of their lives. The slow erosion of the person known and loved for a lifetime is unmerciful. But for those a step away: aged care staff, neighbours, researchers – all of us in some form – we must make an effort to understand what it is the person with dementia is going through. To improve the care and experience of people with dementia, we must move from sympathy to empathy, and the only way to do that is to grow our understanding.


Empathy is the truth of fiction

Pity leaves us stumped; feelings of sorrow at another’s misfortune often relieve us of the responsibility to do anything about their situation. Empathy, however, asks us to act — to understand what it is to be another, and to change our behaviour in response. In regard to a person with dementia, this may mean changing our expectations and approach: agreeing with talk of people who died long ago rather than offering up a correction, or allowing someone the freedom to wander rather than encouraging them to sit down. But this would all be much easier if we knew why a person behaves as they do, and a person with dementia is not necessarily in a position to tell.

Alzheimer’s Australia have recently begun offering a virtual dementia experience, built with immersive gaming technology, in an effort to put aged care staff directly in the shoes of the people they care for. It’s a powerful tool, allowing staff to walk through a scenario encountering various obstacles such as walls that move, a rug that appears to be a dangerous abyss, and a bathroom full of unfamiliar objects.

Virtual Dementia Experience Testimonials

Virtual Dementia Experience testimonials, from Alzheimer's Australia Vic

In a similar vein, a hospital dementia unit in the UK created an ageing suit for younger people to wear to simulate age-related impairments. With a weighted vest similar to a flak jacket, heavy duty earmuffs and a variety of goggles to simulate vision impairments, the wearer ends up looking more equipped to an afternoon on the firing range than in a nursing home. There’s something a little crass about the overall ensemble, and some critics have dismissed the concept as patronising, and damaging in the way it risks promoting negative stereotypes of ageing, but the project’s intention, and results reported by those who have tried wearing the suit, cannot be ignored. It is one thing to be told how another person feels; quite another to come close to feeling the same way. There is, however, a much simpler way to achieve this than gaming technology and ageing suits — one could read a novel.

To read a novel is to reach into another’s mind, and we need to remember that those with dementia are not simply vessels of loss.

It’s no secret that fiction is a shortcut to empathy, a direct line into another’s mind: their way of thinking, perception, motivations, desires. In understanding those who are not ourselves, we develop a more nuanced, and possibly empathic, view of humanity. How impossible it is to know another person, yet in the pages of a book we — the reader and the writer — admirably and repeatedly try. While non-fiction, particularly memoir, is also a powerful tool in this regard, it cannot reach as far as the imagination of fiction. And imagination is needed when the mind’s pathways begin to break down, language eludes, and it becomes near impossible to communicate one’s own experience.

Image: Recent fiction addressing dementia

In recent years, the ability of an author to allow passage to a previously unknown world has extended to dementia, which lends itself to mystery, that great trope of fiction. Dementia makes life a puzzle, full of mysterious objects and words, and shifting meaning. Recognising this, authors such as Emma Healey (Elizabeth is Missing), Fiona McFarlane (The Night Guest), Samantha Harvey (The Wilderness) and Lisa Genova (Still Alice) are among others who have written not about someone with dementia, but from the perspective of someone with dementia. These novels are built on respect and research, and often the personal experience of the author having someone close to them diagnosed with dementia. They give a more powerful understanding of the disease than any other tool available.

In Emma Healey’s novel, Maud is sure something has happened to her friend Elizabeth. Not only is she never home, but Maud keeps finding notes she has penned to herself that confirm her suspicions: Elizabeth is missing. The true mystery turns out to be the disappearance of Maud’s sister in the 1940s, giving the book its narrative momentum, but the insight offered as Maud busies herself each day is invaluable. Whether Maud is eating another sandwich having just assured herself and her daughter she’s not hungry, or forgetting what it was she went to the corner shop for, the reader understands the world and its confusions from Maud’s point of view. We can appreciate her daughter’s frustration, just as we understand Maud’s bewilderment and annoyance at it.

Samantha Harvey gives the reader the ultimate unreliable narrator in The Wilderness’s protagonist Jake, a recently retired architect who has just been diagnosed with Alzheimer’s disease. At first the reader notices a missing word here or there – objects that Jake cannot quite place, or a lack of focus on the present. As the novel continues, the reader discovers that Jake’s memories cannot be trusted. But is this the consequence of a deteriorating mind, or simply the way we all edit our memories upon reflection, shaping them to fit the idea we hold of ourselves? Such ambiguity shows us that Jake is more than his diagnosis.

Elderly Ruth knows she’s become a worry for her sons since her husband died, and she welcomes Frida, the woman sent by the council to help. But in Fiona McFarlane’s The Night Guest, Frida’s arrival also signals that of the ominous tiger of the title, and Ruth’s growing doubts about her world and what is happening to her are transferred effortlessly to the reader.

Image: Kirsten Stewart and Julianne Moore in 'Still Alice'

Kirsten Stewart and Julianne Moore in 'Still Alice'

The recent film adaptation of Lisa Genova’s book, Still Alice — despite its Oscar-winning performance by Julianne Moore — serves to highlight the strength of fiction and the novel form in conveying another’s experience. The story concerns Alice, a Harvard professor, who receives a diagnosis of Alzheimer’s at only fifty years of age. As movie viewers, we become observers to Alice’s plight. The close-ups of her face, the anxious glances of family members — we are on the outside, looking in. But as readers of the novel, we are within Alice’s mind — her confusion and frustration becomes ours, and as her vocabulary simplifies, we mourn the articulateness of her voice even as we share her small triumphs over the adversities she faces.

As we live longer, we are ever more likely to encounter dementia in ourselves or others. It’s an experience that cannot and should not be pushed aside; to do so only makes it more unknown and terrifying. To read a novel is to reach into another’s mind, and we need to remember that those with dementia are not simply vessels of loss — but have profound insights into the human experience, and minds well worth exploring.

 

Portrait of Melanie Joosten

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