Actor, presenter and writer Sir Tony Robinson joined Alzheimer’s Society Director of Research and Innovation, Fiona Carragher, in the studio to record a very special episode of the Tony Robinson Cunningcast podcast.
Sir Tony Robinson’s experience of dementia
Sir Tony Robinson’s experience of dementia was recorded to launch in time for Dementia Action Week.
Tony and Fiona discussed the history of Alzheimer’s from the Ancient Greeks and Romans to advancements in diagnosis and emerging treatments today. You can listen to Tony and Fiona’s full interview here.
You’ve just finished recording with Fiona Carragher for a dementia themed episode of the Cunningcast podcast
Was there anything during your discussion that surprised you?
‘Well, the thing about these chats is that they rely on a pre-meeting so, Fiona and I talked a week before.
I just think she is great, and Alzheimer’s Society is very lucky to have someone who is so knowledgeable, so coherent and so friendly in their team.
In a sense there was nothing that was a surprise; but what was more interesting for me was how the whole back story of Alzheimer’s, from the ancient Greeks and Romans to today and looking to the future, just came together. That was very exciting.’
This year our Dementia Action Week campaign brings the UK together to take action on improving dementia diagnosis rates.
1 in 3 people will develop dementia in their lifetime and yet most of us don’t know a great deal about its history.
Why do you think dementia as a subject is so overlooked?
I think people fear it.
‘Even that word, dementia, was and still is a bit of a no-go area.’
‘Even through to the 18th/19th century there was a terror or fear of dementia and nowadays that kind of terror remains. And that is a real problem as there are other illnesses that have received far more attention and far more money because they don’t have that stigma around them.’
I think 2024 really is the most exciting year that I’ve known since I’ve been involved in dementia issues.
‘We have medications out there making a difference, we have testing on the horizon that will hopefully make a difference and our knowledge of dementia, what happens during the process of someone getting dementia, has come on leaps and bounds.
I think we are in the same position we were in during the first year after the first HIV drugs were coming through – they didn’t solve everything straight away but boy were they a massive kick start and in a very few years HIV/Aids ceased to be the terrifying fear that it had been prior to that.’
And is that exciting for you as an Ambassador of Alzheimer’s Society to feel that change coming?
‘Oh, very much so yes. Both my parents died with Alzheimer’s and I’m now 77.
The idea that there could be diagnosis methods and treatments on the way that could help end the disease that both my parents died from – YEAH I am excited.’
What was your experience of your parents receiving a diagnosis?
‘Ignorance.’
‘Virtually nobody got a diagnosis for dementia, virtually nobody had dementia on their death certificates so getting any real figures as to how prevalent this disease was impossible, and the ignorance of GPs at the time was huge.’
For Alzheimer’s Society, early diagnosis is critical to ensure people get the care, support and treatment they need. It will also give us invaluable data so we can speed up new diagnosis methods and treatments.
Were there early signs and symptoms that you noticed before your parents were diagnosed?
‘Yes. My Dad got very worried for about two or three years before.
And what did I do? I said: “it’s alright Dad, don’t you worry it’s nothing much.” It’s what people so often do in caring situations; they diminish the feelings of the person who is suffering.’
Cunningcast is a history podcast. Historically there have been many barriers preventing people coming forwards to seek a dementia diagnosis.
Do you think this is changing?
‘I do but I think an awful lot of that is to do with money.
There are an awful lot of things in this world where money isn’t a quick fix but putting investment into early diagnosis is one where I certainly think it is. You’ve also got to be able to publicise the importance of getting a diagnosis to encourage people to seek out support.
There must be reasons why getting a diagnosis is important and you must understand what those reasons are.’
Dementia – the forgotten crisis
Alzheimer’s Society are describing dementia as the UK’s forgotten crisis…
Does this align with your experience caring for your parents?
‘Absolutely, yes. I didn’t feel like there was anybody who understood either of my parents’ condition.
My Dad was sent into one of those old ‘mental’ hospitals – I mean this was only 20 years ago – he was deeply distressed by the fact he was incarcerated.’
Why was he incarcerated? Because nobody knew what to do with him.
Campaigning to meet the challenges posed by dementia
We are at an exciting moment in the history of Alzheimer’s – with potential new drugs that seem to slow its progression.
Alzheimer’s Society are campaigning for greater capacity and readiness within health and social care systems to meet the challenge posed by dementia.
Do you feel that hope is on the horizon for dementia?
Hugely so, I genuinely think 2024 is a big year as far as dementia is concerned, because these new drugs coming don’t cure it, that would be a total misrepresentation to even think that they do but, what they do is, they open the door a crack for the very first time.
There are drugs on the horizon that are starting to address it as an issue.
Sometimes they slow down the progression, sometimes as little as 5 months, which doesn’t sound very much but nobody has been able to do that before.
And if that happens now, what’s going to happen? It’s going to attract more money, it’s also going to attract more bright, young medics who’ll be interested in making dementia their career, whereas in the past they might well have felt with some justification that it would be a bit of a dead-end so why don’t they go off and study heart disease or cancer.
Nobody needs to think that anymore. Dementia has suddenly, almost overnight, become the kind of condition that people want to invest in on all sorts of levels and that is terrifically exciting. The one big challenge is can our wonderful NHS be geared up to tackle all the demands that will be placed on it?
Well, it’s going to have to – but how they do that, let’s wait and see.
Dementia advice and support
Alzheimer’s Society provide advice and information, whether you are worried about your memory, waiting for a referral or already diagnosed.
What would you say to someone whose family member has just been diagnosed with dementia?
‘I don’t think I would be so presumptuous, to be quite honest, as it depends on what your condition is.