Writing is for everyone. People with dementia who are living in residential care homes have thoughts, views and experiences to write in their own words. They have much to say to us about life, about living life, about who we all are as human beings. And dementia often enables a person to use words in ways that are fresh, powerfully simple and poetic.
I have developed my work from my experience with my mother when she had dementia. I watched her losing her memory, her capabilities, her independence. I watched her unceasing struggle to assert her own power. I remember the great sadness, the stress, the isolation that I felt through that time, and the fear that one day my mother would no longer recognize me.
But dementia, for my mother, was also something else. Something that in her words “stripped the top layer”. I am an only child. Since I was a little girl, it seemed to me that my mother and I were very different and our communicating was not easy. Yet there was a deep connection between us always. With dementia, my mother became her free-spirited self and we could finally see one another and communicate. In the midst of dementia, she found and lived a new and great inner power.
I wrote down many of her words, and after her death in 1997 I made a book of some of our conversations, my writing, and drawings. I called the book ‘inner-out’: the words my mother had used to name her dementia experience. She had taught me to listen in completely new ways and I am still learning.
The power of this experience led me one year after her death, to meet other people who have dementia. With them, I found again what I had experienced with my mother. Ways of being together and communicating with one another that are different, deep, honest and life-giving. My life in the years since has never been without people who have dementia, my friendships with them, and my passion to enable what they have to say to be heard – as authors in their own right.
This project has brought great benefits to the residents, the staff who work with them, and to their families and friends. Anthea has a talent for engaging with people and for bringing out thoughts, ideas, and feelings which might otherwise go unspoken and unheard.
I will never forget the first time I attended a book launch. The room was filled with the authors, their relatives and friends, and staff. During the book being read out loud, there was laughter and tears. Seeing the joy of the authors, their sense of pride and achievement, and the importance to them of having their voices heard, appreciated and enjoyed, was a deeply moving experience. I have seen and experienced this at each book launch that I have attended since.
This whole project has been nothing but positive for all. I am delighted that the residents with dementia in residential units are having this opportunity to experience Anthea’s innovative approach. I find their poems and writing profoundly moving and meaningful, and I think they would bring richness and new insights to a wide audience. I am looking forward to seeing many more books created by them in the future, and to their voices continue to be heard. I’ve used quite a few TEDx videos in the posts just to emphasize how the world of healthcare and science is involved in finding solutions to terminate or limt the effects of this horrible disease.