My mum lived with vascular dementia for her last decade and it was a tough time for us as a family. I’m a journalist and I began to write in the nationals about my parents’ old age experiences – I’m afraid they weren’t very uplifting pieces but peppered with words such as battle and fight, sorrow and loss.
It was only after both my parents had died and my emotions were less raw that I set up my blog, thinking that I could write helpfully about elderly care issues and the pitfalls to avoid (goodness knows I’d stumbled across most of them). Very soon my rapidly growing readership made it clear that dementia was what most interested them. Beginning to recover from my own traumatic experiences, I was happy to oblige, with one small caveat.
I was worn down by my years of caring for two people I loved dearly. Now I wanted to write uplifting, witty and lightly informative pieces, with a very human slant. I sought out moving personal stories and studded them with what I hoped were interesting facts and tidbits – the sort of things I wished my family and I had known when mum was living with dementia.
I discovered, to my delight, that up and down the UK there are countless individuals, enterprises and charities dedicated to finding innovative, thoughtful and genuinely person-centred ways to enhance the lives of those with dementia. Take Rachel Mortimer, a Brighton-based artist who discovered that she could connect to those with advanced dementia through exploring art works with them to trigger memories and emotions. Rachel subsequently founded [Engage and Create](https://www.engageandcreate.com/), an award-winning social enterprise offering various dementia training packages, resources and support.
Within months my own blog had garnered a major national award and I was being invited to give speeches, to contribute to specialist publications and university courses. I was hailed as one of the country’s top influencers in the sector. Somehow, without realising it, I’d become a dementia campaigner.
I continued to blog about initiatives helping people with this cruel condition to live better and express themselves – whether that be through dancing, poetry, reminiscence therapy or life story work. And having seen for myself (not least with my own mum) the extraordinary power of music to connect with people living with dementia, I harnessed support from the biggest names in the sector [to campaign for the BBC to reintroduce its old weekly radio programme Singing Together](https://www.telegraph.co.uk/family/relationships/magic-music-dementia-sufferers-campaigning-bbc-bring-back-singing/), this time focussing on older people and those with dementia. I’m still battling that cause (my fighting days aren’t completely over, it seems).
Over the last few months I’ve begun listening to podcasts on my daily dog walk with Bert (an endearing but very naughty cockapoo). I loved the relaxed nature of podcasts, their chatty, non-threatening style. It was, I said to Bert as we circumnavigated the common – yes, I know, but let’s face it we all talk to our dogs – the perfect medium in which to discuss the condition most feared by those of us over 55.
I knew, from listening to other podcasts, that I needed a theme. As I’d discovered more about dementia, I was haunted by the wish that I’d known then (when mum was alive) what I know now. Many others said the same to me. This would be my angle.
Next up: what to call it? I’m an English graduate; I devour books, so sought inspiration among the pages of my favourite authors. Nothing sprang out at me; then a friend mentioned Sylvia Plath and there, within her journals, I found a description of a snowfall.
She writes of “scatter-brained flakes” circling down in aimless swoops and spins, and though she has an exam to sit in two hours she declares that she “must stop a little, and look”, which she does, beautifully detailing what she sees. She is living in the moment. Which, as so many of those with dementia tell me, is a rare upside of their condition, as profound as it is surprising.
“Well I know now,” Plath records in 1950.
I’d found my title.
It has proved a rich seam. There is so much knowledge out there, if only those who need it right now knew how and where to find it. Which is where my podcast can help. Everyone I talk to has tales that will either resonate with listeners or inform them, reassuring those with dementia and their loved ones that they are not alone and there is life after a diagnosis.
[Nula Suchet](https://pippakelly.co.uk/) proved the perfect first guest. Warm, honest and engaging, she spoke of her late husband’s dementia and described what this had taught her – about her love for him, about herself, about life. After James died Nula married the broadcaster John Suchet, whose own wife Bonnie had also succumbed to Alzheimer’s.
I talk to nine guests during the course of the series, each one with fascinating and valuable insights they are happy to share. Creating the podcasts was immensely rewarding and enlightening, and I’ve made some new friends along the way. I hope you enjoy meeting these extraordinary individuals as much as I have.
Pippa Kelly is an award-winning dementia campaigner, blogger and author, and host of the podcast, Well I Know Now. Follow her on Twitter [@piponthecommons](https://twitter.com/piponthecommons) and her website: [https://pippakelly.co.uk/](https://pippakelly.co.uk/)