Writing dementia well

We all know the adage, write what you know. But how do we write about, and publish stories on, subjects we can never truly understand?

This is the question I faced when writing my second novel, Tiny Pieces of Enid. The main character is based on my own Nanny Enid, who suffered with dementia in later life. My ultimate goal was to raise awareness of the disease and to offer some familiarity and support for those with family members who suffer from it.

The question of how we use personal experiences in writing has plagued author and publishing communities. We know how important it is, but the boundaries for what that actually means are blurry. Writing about a character living with dementia increases this challenge. In the case of people living with advanced dementia, we can’t ever truly know how they feel. So how can we be true to their feelings? We know more than ever that people from diverse groups need to be represented and I think that goes beyond providing the platform. For many, such as people with certain disabilities, victims of abuse or sufferers of diseases such as dementia, the opportunity to speak just isn’t there.

As an author, I believe it’s important not to be overly sentimental. I didn’t want the novel to be indulgent, I wanted it to be true to a lady that maintained her somewhat-blue-sense-of-humour throughout the course of her disease. Dementia couldn’t take that away.

Having been close to my Nanny Enid (I’ve literally known her all my life), I could try to see her predicament with pragmatism and truth. People with dementia aren’t just suffering from a disease, they’re living with one too, just as their loved ones are often living as carers. It’s a truly rotten experience, but one that so many families are facing with determination to share happy moments even on the bleakest of days. 

Immersing yourself in your subject through lived experience and wider research is key to doing justice to those who can’t tell their own stories. Not only does this give your story credibility, but it creates an honest narrative that resonates with people. While writing I was lucky enough to have a consultant geriatrician working with me to ensure that the story remained true to the disease. This was invaluable as, although I had my own experience to draw from, for me it was limited to one person; my nan. It also helped that the consultant was my sister, so we could be really honest with one another throughout the process. Perhaps too honest. Dr Ewins wasn’t afraid to tell me when I was duffing it up.

Immersing yourself in your subject through lived experience and wider research is key to doing justice to those who can’t tell their own stories

Olivia, Enid’s partner in crime in the story, is another character who wouldn’t be able to tell her story, and sadly she is representative of many in a similar situation. Olivia is a victim of domestic abuse, but I found that by taking the time to speak to people with diverse lived experiences and consulting them helped to represent these stories authentically.

When we’re writing narratives that belong to somebody else, I found that consultation was key. Nanny Enid may not have intentionally provided insight into her dementia, but she outwardly worried that she was trapped and often expressed her desire to escape. She was frustrated that words came difficult, but she’d still use them to re-share her best memories, and to relive the most important moments of her life.

While my name is on the front of both my novels, I had friends, family and acquaintances involved in the writing and publishing process, all with different life experiences. Exploring these unique perspectives and channeling the energy of my consultees, gave Enid, along with all the other characters, a life of their own.

Being able to write a character authentically takes a certain level of understanding, but of course, there’s always the 10% that’s completely made up, or that comes from other people’s experience, be that your editor’s, your wife’s or even your dog’s.

I’ve found that capturing these experiences is far more compelling than writing my own limited experience (a book about "Love Island" with a cup of tea, anyone?)

Nanny Enid gave me the pieces of her whole life, so the book isn’t about dementia, it’s about a person who just happens to suffer from dementia. Olivia is a person who flourishes through her friendship with Enid; her controlling relationship doesn’t define her, it’s a piece of her. It’s our job as storytellers to put those pieces together, to tell stories that matter without making those pieces our own.