In January 2019, I went to BBC Radio Sheffield with Nigel Worthington, who supports his wife Pat living with Dementia and Grace Stead from the “Enrichment for the Elderly” Charity and who has family experience of Dementia to record a pilot podcast for the BBC about Dementia with Peggy Walker a reporter at the station , who also has family experience of Dementia.

The first full episode is due to be released tomorrow (20th Jan 2020) and will feature people living with Dementia, family members and professionals talking about their experiences of Dementia.

It is important for the voice of Dementia to be heard as it is still seen as a silent, invisible disease, where stigma, ignorance and the negative images portrayed becoming a barrier to the health and wellbeing of people like myself, living with this insidious disease.

It is also important to talk about the good and the bad experiences, how we may still be capable not incapable and raise awareness that one person’s experiences of Dementia will be different to others but that those experiences are no less valid.

Throughout the series, people will talk positively as well as negatively about their experiences, they are all valid personal experiences, not designed to undermine one another’s experiences but to show the breadth of peoples experiences with Dementia to change the stigma, and negative perceptions/images and to educate those that do not live with this insidious disease.

Finally, a thank you to BBC Commissioners for listening to the pilot and commissioning the full Podcast series.

Link to Podcast Page

From Grace Stead:

I try to help people understand dementia better every day. I work to deliver training across the country to professionals and volunteers, from GPs to memory cafe volunteers and everything in between with Enrichment for the Elderly.  Almost every day when I am delivering training I get a heartbreaking response; “if only I had known that X years ago when I looked after my mum/dad/grandma.”

I count myself very lucky as I had a second chance after my first Nan Dorothy died from dementia.  My other Nan, Joyce was diagnosed and I understood the condition better, I could do all the things I wish I could have done with Dot, with Joyce.

I went to BBC Radio Sheffield with the idea for Dementia and Me because I wanted more people to talk about it. To learn from my mistakes and experience a journey of understanding from people who know the condition best, people living with it, either personally or through a person they support, care for or love.  I wanted people to be able to listen to something over again if they needed to, laugh with it, cry with it and to stop more people coming into my training room with that one simple regret.  ‘I wish I had known more!’

From Peggy Walker:

I also have a Grandma called Joyce. I lived with her for just over a year fairly recently, and saw her dementia get worse. At 94 she’s still going strong, but now lives in a dementia specialist care home.

When Grace approached BBC Radio Sheffield about wanting to make a podcast I was keen to help her make it a reality.

We had various meetings about who to approach. Our unique selling point is that each episode (we think) features someone who has dementia. During recording we heard again and again that people felt they were talked about, but not talked to. Especially from Howard! 

The brief from BBC bosses was to make the podcast positive in tone – something which I thought would be difficult, but that’s really been one of the easiest bits. We’ve heard from some inspirational people. We were also asked to aim it at a young audience (younger actually than me and Grace are!) One of our contributors was annoyed that dementia is seen as an ‘old person’s disease’ – she’s only in her early 50s.

We hope you enjoy listening to ‘dementia and me’. It’s due out on Jan 20th 2020.  Happy listening!

You can get in touch with us @BBCdementiapod.

Link to Podcast Page

You will find the Podcast online and on the BBC Sounds App and other Podcast Apps