Dementia and selective memory in fiction

There are many causes of dementia, including Alzheimer’s disease. In Australia, more than 332,000 people in Australia currently suffer from Alzheimer’s alone. As the population ages, the incidence of dementia also is expected to increase.

As a person’s symptoms of dementia increase, more and more short-term memory is lost. The person will live much more in the past. When the present time makes no sense, the past is the only place they can live. Sadly, even those memories are eventually lost as the disease advances.

Emma Healey’s new book, Elizabeth is Missing is a novel with dementia t its heart.  The book examines issues related to dementia and it is also a dark psychological thriller.

A novel with dementia at its heart.

A novel with dementia at its heart.

Six of Elizabeth’s family members have been stricken with dementia. The book began from a chance remark from Elizabeth’s grandmother, who was suffering at the time from mild dementia. She told Emma and her family that her friend was missing. That was the trigger for an imagined story.

The book is written from the point of view of Maud, a woman who has dementia. The author has imagined herself into the mind of another, much older woman. She also said that she made use of notes of conversations she had with her grandmother. She used this experience to inform her book.

Author Elizabeth Healey

Author Elizabeth Healey

Many writers say they use snippets of overheard conversations in their work. Emma Healey admits to deliberately making notes. She recorded conversations with her afflicted grandmother to use in a novel. This takes the practice to an altogether different level!

People with dementia can remember selectively. They are frequently unreliable witnesses even to their own lives and experiences. Sometimes they remember events long past. They recount those events as if they are occurring in the present or recent past.

Caring for a person with dementia is arduous, often thankless, labour. Working with them can be likened to detective work. What are they trying to tell us? What exactly are we hearing from this person? What time of their life are they talking about? How can we connect with them? How can we continue to respect them and show that respect?

Because what they say can be undependable, it does not mean we can discount what they tell us. I once worked in a dementia-specific aged care facility. All of the residents were dementia sufferers. One of the residents complained loudly that someone was hurting her. The staff, used to working with these apparently unreliable witnesses, were inclined to disbelieve her. But one skilled registered nurse took the old woman seriously.

When the nurse examined the resident, she found multiple bruises on the old woman’s arms and torso.  Her fragile skin had been broken by too-rough handling by a staff member. The bruising was new. The police were called. A staff member was stood down pending an enquiry. He was later charged and convicted of assault.

Old and vulnerable woman (Image courtesy of Advocare)

Old and vulnerable woman (Image courtesy of Advocare)

People with dementia are particularly vulnerable. They can be assaulted by strangers. Family members, also, can abuse them financially, physically, emotionally and sexually.

Returning to the novel Elizabeth is Missing. The protagonist is an unreliable narrator. Can the reader believe what she says? Which parts of the story are true? What should we question? What should we discard?

It is absolutely fine to write an unreliable narrator in fiction. We know the story is not true, so it does not matter whether the teller of the story can be trusted.

This is one of the major differences between fiction and life-writing. In memoir and autobiography, the writer is constrained to tell the truth as he or she knows it. The writer forms a contract with the readers that the story is the truth, and that it can be believed.   It is particularly important that a life-writer tells the emotional truth.

According to Emma Healey, there is always a gap in writing that the reader must fill in. No writer can tell a complete story.

Elizabeth is Missing was fun to write,’ Emma Healey told a large audience at the Perth Writers Festival 2015. ‘Humour is important when dealing with difficult subjects.’

If you suspect someone, including you, is being abused by a family member, contact Adovcare’s Elder Abuse Help Line  on 1300 724 679

For information about dementia contact Alzheimer’s Australia. The number of the National Alzheimer’s Helpline is 1800 100 500

 

2 thoughts on “Dementia and selective memory in fiction

  1. Hi Maureen,

    I’d love to read this book, although it sounds as if it would strike close to home for me. My grandmother had dementia, then I watched my father (her son) wither away from it too. It’s hardest for the sufferer, of course, for what they’re losing, and it’s hard for carers and relatives, as the disease does take so much of their loved one. I remember grieving each time Dad lost something he used to be able to do—the ability to use a knife and fork; the ability to walk; the ability to chew; the ability to control his bladder. I felt we lost him gradually, piece by piece, I was already grieving him while he was alive—so much so, that part of me was relieved when he died. After his death, when I wasn’t faced with the withered Dad each day, the memories of him as a healthy father could return, and they have.

    I remember, too, the frustration I felt when carers—whom I expected to know better—would get angry at Dad’s behaviour, or expect him to remember that they’d told him not to do something! They forgot it was the disease, not him, that caused the behaviour. He would have been beside himself if he’d known some of the things he did. It’s a tragic disease, for all involved.

    • Dear Louise, what a sad thing to have to watch! It adds to my picture of your life, and helps me to see what a courageous woman you have become in spite of so much adversity.

      I can’t imagine someone so close to me as a parent disintegrating and disappearing before my eyes. Both of my parents were still active and fully cognitive when they died. My dad was listening to Bruch when he became ill. At one time I worked in an aged care facility with a dementia specific wing a couple of days a week in order to keep my nurses’ registration current. I learned a lot about working with sufferers of dementia (and their families). I also learned a great deal about myself. It was a humbling and rewarding place to work. I actually loved it. However, it made me so aware of elder abuse that when I got the opportunity I managed to obtain funding to run a prevention of elder abuse program in an agency (Advocare Inc.) that advocates for people in residential aged care and people receiving home and community care services.

      I’m not sure that I agree with the practice of authors who make notes of conversations with dementia sufferers to inform a book!

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