Maxine’s story: Reading Well for dementia

Reading Well for dementia recommends helpful reading for people affected by dementia. Maxine, a member of the co-production group, shares her experience of being involved in developing Reading Well for dementia.  

Reading has always meant so much to me. I spent much of my childhood in St Barnabas’ Library in Leicester, devouring children’s books. At twelve, I graduated to the adult library, and then to working behind the counter. I loved finding books for people and shelving the returned books. I was close to becoming a librarian, but I went to Birmingham University and life had other plans.   

Writing was my second love. I wrote the first poem when I was four, but it wasn’t until I was 60 that I committed to writing the first novel and completed an MA in Creative Writing. My first novel to be published was Vintage, followed by Closer and there are five other books with my name on the spine, including a poetry collection, This Dust.   

I first came across The Reading Agency when I was working with my local library. It seemed a good plan to have a range of Reading Well books, and the Workers Educational Association funded us to purchase a selection. It was a delight to choose the stock for the library, so I was very happy to be invited to join the co-production group that would help choose the books in the Reading Well for dementia list.   

Reading for information  

My diagnosis came in September 2022. I have Alzheimer’s, and I was fortunate to have an early diagnosis. Books are my first port of call when there’s something new to learn. I like story, I like the personal, I like developing my awareness as well as my knowledge.   

Dementia wasn’t entirely new, as I’d worked in a small dementia charity. My favourite aunt had dementia, as did my close friend Kate. So, I’d already read books like The Forgetting, by David Shenk, and I was interested in the range of perceptions of dementia. Many books don’t have the advantage of input by people living with dementia, but increasingly we are writing books about our own experience, which offer new insights and understandings.  

I’m particularly interested in our perceptions of dementia – the fear we have of it, the guilt we feel when we forget, or get things wrong, the reactions other people have. As I watch my own experience, I wonder how much of the earlier stages of dementia is coloured by the assumptions we make; how wrong they can be. There’s no wonder we withdraw if we feel ashamed, or awkward in company. No wonder life seems to shrink if we lose a sense of purpose and pleasure in life.   

But maybe we don’t have to withdraw from life. Maybe we can stay out there in the world and our community. Maybe other people could accept that we need to be listened to, that conversation might need to be slower for us to take part. I love the yellow cards those of us in the DEEP network use: ‘I want to speak please’ tells others what we need. It also stops us from forgetting what we wanted to say by the time there’s space to say it! And I also like being with my friends who have dementia. We can laugh together, accept who we are, and encourage a positive approach instead of shame and grief.   

So I’m doing what I can to help change perceptions and attitudes – I write a blog about dementia, with poem and thoughts, and I’m happy to speak about dementia when people are interested. I’ve met some amazing individuals, and organisations, who are dedicated to changing attitudes, and that was one of the priorities for me in helping to develop the list of Reading Well for dementia books.   

“Discovering the world of dementia can open us up to new and rewarding experiences.” 

Experience on the co-production group  

I’m wary of books about dementia. I’m wary about people who claim to understand when they haven’t experienced it. I’m wary of people who support or work with people living with dementia, who believe this gives them knowledge about it. I’m wary of implying that everyone who has dementia is the same – that dementia becomes who we are. I think that’s far from the truth.   

I enjoyed being on the  co-production group – and sometimes found it limiting as there were differing approaches.  We each need different ways of picking up what we need to know. There’s the science, the how-to, the research – and there’s the personal, the stories, the books which are aware of dementia issues and pay attention.   

The books I picked out were mainly written by people living with dementia, or books that I sensed were picking up crucial issues. Why Dementia Makes Communication Difficult, by Alison Wray, looks at the very real communication issues that dementia brings up. It has some suggestions that are challenging, but that could make a real difference. I found it readable too.    

That’s probably my favourite, but Wendy Mitchell’s book Somebody I Used to Know was the book which first let me into the personal world of diagnosis and experience, and I’m so grateful to have read all three of her books. She found ways to live to the full, and she’s a model for all of us. I’m glad that’s on the list too.   

If you have the books in your library, I’d suggest having a look to see which ones speak to you. You might like the ones I’d choose, or you might prefer a very different approach. But discovering the world of dementia can open us up to new and rewarding experiences. We can learn to stay in contact with the people we love, however they are, even at later stages.   

It’s great that this new list exists now, and I hope it gives us all opportunities to explore and develop. That’s something huge, for everyone. Because we will all come into contact with dementia at some time in our lives.  

Explore the Reading Well for dementia scheme here.

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