A Tale of Two Videos

For the past few weeks I’ve been making a video about dementia.

It was to celebrate ten years of Exeter Dementia Action Alliance and to remember the artist and cartoonist Tony Husband, who worked closely with EDAA for many years.

I’m not a videographer and I made the video as a volunteer and member of the EDAA board, but mostly because I’ve seen several of my loved ones live with and die from dementia, and I’m a dementia carer for my husband John.

I recorded the tracks for my video on my mobile phone. I added photos from the Alliance’s wide collection of albums Shining a Light on Dementia for the last decade. My friend Vic did the narration. Local folk group Show of Hands kindly gave permission to use a soundtrack from their album The Path.

I’ve been sat here editing in recent weeks for many hours on my computer, whilst John, bless him, has been watching daytime TV in the lounge and puffing away on his pipe, every now and then asking where I am, what I’m up to, and can I get the television on the channel he wants to watch.

Both my grandmothers had dementia, my granny Florence, when I was a child, aged about nine, until she died when I was 15. My Nanny Phyllis lived with it when I was older. I cared for a dear friend Stan for two years, he died with dementia in 2008. My Dad Bernard was diagnosed with vascular dementia, aged 70, in 2011. He died in 2015, age 73, just before I ran my 50th marathon raising £6,500 for dementia research charity BRACE.

John was diagnosed with dementia in 2017, age 72. I’ve been his full time carer since.

I made my video as a tribute to all of my loved ones who I tried, and am trying, to help live well with dementia, whilst also being aware of the stark cruelty of this increasingly common disease – one in two of us will be affected by dementia in our lives, either living with the condition, as a carer, or both.

More research for a cure, or at least a reduction in symptoms, is essential and it’s shocking that the prognosis for someone with dementia in 2024 is about the same as it was for my Granny in 1974. Undoubtedly there’s better awareness now, better support and many people do LIVE WELL with dementia.

Exeter Dementia Action Alliance has been at the heart of working towards the city becoming more dementia friendly and it’s been amazing to look back at what’s been achieved. The Private Eye cartoonist and a dear friend of the Alliance, Tony Husband, contributed much to help raise awareness. His sudden death in October 2023 was a huge loss.

I hope my video reflects all of the above.

But this is a tale of two videos, so what about the second? In recent days the Alzheimer’s Society issued a video called The Long Goodbye. There’s been an outpouring on social media condemning it for being bleak and not reflecting the “living well” message they promote through Dementia Friends sessions.

In an attachment to the video the society writes: “At Alzheimer’s Society, we’ll be there for you again, and again, and again. At Alzheimer’s Society, our vision is a world where dementia no longer devastates lives. But we know awareness of dementia amongst the general public is low. This means that it’s not the priority it deserves or needs to be. Through emotive storytelling grounded in real-life experiences, we need to help the public understand that dementia is everywhere and show them the devastation it causes.”

Most likely this video will have had a full production budget, been professionally made and is targeted at raising funding.

It might be emotive storytelling, but to me it lacks compassion – which surely should be at the heart of all we do as caregivers and in life.

Here are the two links, watch both and judge for yourself.

Celebrating Ten Years of Exeter Dementia Action Alliance and Remembering Tony Husband https://youtu.be/vitzyHS2bOY?si=ExhJRR7JXLY4mqrf

The Long Goodbye, Alzheimer’s Society https://youtu.be/NWPA8wa4cME?si=_E3aiaLocuKS7wrh

Ironically, after putting all that effort in I can’t be there for the first public showing tonight, having come down with Covid two days ago.

So I’ll sit here with John as wife, dementia carer, amateur videographer and keep doing my best to help him live well.