In 2025 Saba Khan published ‘The Disappearing Partner: A memoir of Love, Loss and Dementia’s Unchosen Path’.
She wanted to do more than tell one family’s story: her mission is to raise awareness and promote change. Saba Khan lives in Leeds and is a carer for her husband, who lives with dementia.
We had the privilege of talking with Saba and asking her more about the book.
Have you always been a writer?
No! haven’t always been a writer. In fact, I’m severely dyslexic and have always found reading a real challenge. Writing by hand with pencil and paper is difficult for me, but somehow, when I sit down at a laptop, everything just flows—the technology seems to unlock my thoughts.
I wanted to share my story in a way that’s clear and free from jargon, so it’s easy for anyone to understand. Even as a professional, I faced so many barriers when I was trying to find support, and I wanted my writing to break down some of those barriers for others.
You’re a busy woman – you have a job, children, grandchildren and you’re a carer for your husband. How did you make the time to write the book?
I generally sat down in the evenings with a cup of tea, and Emmerdale and Corrie on in the background. I think I am good at multi-tasking. I had a period of time off sick in 2024, and spent some of that time writing while Rashid was doing his wordsearch. I’m not a person who’s used to sitting around and not doing anything. I like to keep busy.
Also – it’s important to know you’re not on your own, it’s important to get support and share your learning, your success and the challenges you face.
Saba Khan
How have people responded to the book?
The response from friends and family has been amazing; lots of people are surprised I have written a book. They were like ‘have you written this? Wow – it’s amazing!’ I have had comments that it is informative and so easy to read. All the reviews on Amazon are 5-star, including from people I don’t know.
Some professionals have been very positive and said this is a book that needed to be written. My friends are really proud, and they tell me I’m raising awareness. I’ve also been told that the title rings true to people who have experience of dementia.
The title especially seems to resonate with people who’ve experienced dementia. Speaking at the book launch was a huge challenge—I’m not a public speaker and it took everything out of me. But I noticed even the King uses notes, so I used cue cards. I’m getting better at speaking in public.
Are you hoping the book will change people’s minds? What difference do you think the book will make?
For me I’ve learned so much on this journey and I think I need to pass the information to others who are starting the journey. I want to raise awareness of dementia so that people have a better understanding, especially among South Asian communities.
I know many people within my cultural community don’t really have an understanding of dementia: it’s perceived as an old age thing, rather than what it is. Within my family We speak openly, and my grandchildren understand that grandad sometimes becomes confused and needs extra help.
And I want services to change: dementia doesn’t discriminate, therefore services should not discriminate. I think what would particularly help is for doctors to talk about dementia within the communities they work in. I think what would really help is having a South Asian carers’ group, or having facilitators at carers groups who have a good understanding of the cultural needs of South Asian families. We need all services to be genuinely inclusive. We need support services staffed by people with community languages.
If you had to choose one big message for people from the book, what would it be?
For me it is: continue making memories, so you don’t have any regrets afterwards.
Also – it’s important to know you’re not on your own, it’s important to get support and share your learning, your success and the challenges you face.
Too often in the South Asian Community people do not recognise signs and symptoms of dementia until it is advanced. There’s a big gap, a lack of understanding and knowledge. People only realise it is not an age thing when it gets to crisis point. I knew about the signs because my mother had dementia – therefore I was able to get my husband an early diagnosis. Even then I had to push to get his assessment done. Initially they thought it was cognitive impairment, and I wasn’t sure what that meant, or what we had to do. But diagnosis can really help the whole family to understand and manage the situation.
What’s your next project, Saba?
I’ve already written a new book! ‘My next project is a book called ‘My Grandad’s Got Dementia’, which I’ve written from a child’s perspective. I believe that when we help children understand dementia from an early age, we’re laying the foundations for a more compassionate and informed society. In my own family, we talk openly about dementia with our grandchildren, so they know how to support their grandad and recognise the behaviours that dementia can bring.
This book is short and simple, designed to help parents explain dementia to their children. I’ve included a comprehension sheet so parents can ask questions and see what their children have learned and remembered. I’m currently looking for someone to illustrate the book, as I want each section to have colourful pictures that will engage young readers.
I am convinced that by speaking openly with children about dementia, we ensure the next generation is better informed about the signs and symptoms. If we start these conversations when children are young, they’ll grow up with greater understanding and empathy. This knowledge will help them become adults who can recognise dementia, reduce stigma, and support those affected—ultimately helping to create a truly dementia-friendly society. I’m planning to write lesson plans and introduce them at my grandchildren’s school, and I hope one of my grandchildren will present the book there. By starting with children, we can make a real difference for the future.
Saba’s book is on available now on Amazon.
