I remember vividly the first time I asked my dad if he was feeling ok. He’d come down to London on his own to watch a rugby match at Wembley back in 2014. A week before my mum had called me about it in a total panic at the idea of him travelling alone and asking me to meet him and make sure he got to and from the stadium. For reasons I can’t recall he wasn’t going to be travelling with anyone else, but it was very unusual for her to have expressed such concern. While I’d noticed things about his overall behaviour and demeanour I’d put it down to him being fed up with his arthritis and anxious about various operations he was having, noticing that he always seemed better, mentally, afterwards. But the call spooked me and was my prompt to broach the topic.
After the match I met him at Baker Street and we went for drink in the Doric Arch pub in Euston station before he caught the train home. I asked how he was feeling and he didn’t hesitate in saying he didn’t feel right. We talked about possibilities – albeit not *that* possibility – and agreed the best course of action would be to make an appointment with his GP. The GP referred him to the memory clinic.
I recall their huge relief when they were told it definitely wasn’t Alzheimer’s, but a case of ‘Mild Cognitive Impairment.’ Within a couple of months, and a battery of cognitive tests (which caused my dad huge anxiety), the doctors had revised that assessment, concluding that it definitely was Alzheimer’s. I was with them when the consultant delivered the news.
When we got back to their home, we obviously had a cup of tea. Perhaps reflecting the sentiment behind *that* Alzheimer’s Society ad, my mum’s mind seemed to have moved very quickly towards death and dying. And in the months following she absolutely was grieving for the future she now didn’t believe she was going to have. But my dad just said something along the lines of ‘well, I feel ok right now and for as long as I do I’ll just carry on with things.’ And that was pretty much how he seemed to approach most of the next 6 years until he died. Every now and again I’d ask ‘how are you feeling’ and he’d say something like ‘well I’d rather this wasn’t happening but I’m alright really’. Or he’d complain about the arthritis in his neck, knees or ankles, which seemed to undermine his overall wellbeing far more than his dementia.
In those early days I wouldn’t characterise the ‘presentation’ of my dad’s dementia as memory loss, so much as a kind of distracteness, or hollowed out-ness. He just seemed a bit.. absent sometimes. I’d asked the consultant how Alzheimer’s would affect my dad, and she’d talked about its impact on ‘semantic memory’. The best way I found to understand that was the exercise where you have to explain to an alien, step by step, how to make a cup of tea. His dementia would erase one or two of the steps from his memory. And sure enough that’s what latterly began to happen, alongside forgetting or confusing the names of things. He couldn’t make a cup of tea anymore. He always went to do the washing up but would clean everything with his fingers. I remember during lunch in Lytham St Annes my acting in the nick of time as he’d carefully unscrewed the top from the salt cellar and was about to empty the entire contents over his fish and chips. An avoidably long spell in hospital at Easter 2019 saw him suffer delirium and his cognition take a nosedive afterwards. Later, my then 6 year old daughter helped him out as he tried to eat his dinner using a fork and wine glass. His ability to hold a coherent conversation had gone altogether by later 2019. Most challenging of all, in the very late stages of his life, he seemed unable to locate the toilet and would take a pee in different parts of the house.
There you go: the unvarnished truth about dementia.
Or rather, part of the unvarnished truth. Because up until just before the lockdown he was still going with his friends to watch Leigh Centurions play. He was still meeting his old teaching colleagues for lunch once a week at the Golf Club they’d played at together. He and my mum had joined ‘dementia choir’ where, despite not being able to string a sentence together he’d sung ‘Love me tender’ note and word perfect to my mum. He’d go with her to church. They saw their friends. He carried on living, just as he said he wanted to, albeit with ever growing support from my mum. Covid ended all that, not directly, but through the incomprehensible to him restrictions. And then he died.
Of course, as I said in my last blogpost, had he lived, maybe these examples would have become far fewer and he would have reached the ‘until I can’t’ point whilst living and maybe I’d be characterising that as a ‘living death’. Certainly that’s what I’m hearing from those who felt the ad represented their experience. But I think the main reason people are polarising on this question is the phrase ‘living well.’
Listening to people discuss the Alzheimer’s Society ad the past few weeks I have to agree that the language of ‘living well with dementia’ can be unhelpful. I know it’s not the intention, but like ‘ageing well’, or presenting Paralympians as a benchmark, it implies an obverse of ‘living badly’ and that doing so is a matter of individual agency and effort. But my dad’s goal of ‘living as well as you can until you can’t’ seems to me a desirable, realistic and flexible goal (albeit a somewhat wordier one), whereby you take the rough with the smooth, without any pressure to conform to any ‘norm’. It doesn’t deny the reality of dementia, but it maintains a focus on our right to live as well as we can do with dementia at every age and stage, no matter how advanced or pronounced our symptoms. After all, if we ditch that goal, what are we left with?
I’m still struggling to understand the intention behind the Alzheimer’s Society ad, or any of the rationale that’s been offered for it. The Society seem to be saying it’s a strategic necessity because dementia isn’t being taken seriously enough. They seem to implicating the ‘living well agenda’ in this, suggesting it has acted to dilute fears about dementia, such that it is being deprioritised as a result. They keep quoting statistics revealing the relatively low numbers of people polled who recognise that dementia is the ‘UK’s biggest killer.’
As I said in my last blogpost, contrary evidence finds the dementia is the most feared disease among the over 55s, and the second most among all adults. That doesn’t suggest any dilution. Rather it indicates that the default thinking of the public is broadly aligned with what the ad depicts. But the Society clearly feels it needs to ratchet fear up further still.
I’m unclear who the ‘biggest killer’ message is aimed at. I think for most, it’s the idea of living with dementia that terrifies people, not dying from it. Perhaps it’s just targeted at policy makers, but even there, it being the biggest ‘killer’ among a group largely in their 80s seems unlikely to keep them awake at night compared with the social and economic challenge of supporting people while they are alive. And of course the ad doesn’t say anything about these numbers.
How does all this translate into support for the purported campaigning priorities of the Alzheimer’s Society?
If investment in finding a ‘cure’ is the overriding goal of goals, then maybe full-scale shock and awe style fearmongering is what’s needed (tho one has to ask just how much more fearful people need to be to reach some tipping point). Their ‘with dementia you die again and again and again’ ad came hot on the heels of the Alzheimer’s Research UK one, about which the Alzheimer’s Society CEO Kate Lee was hugely defensive. Any other harms, strategic, human or otherwise can just be judged collateral. I sense this is the position of influential figures at Alzheimer’s Society.
But to pull back from that long term, hugely aspirational goal, the immediate term goals of the Alzheimer’s Society can all be framed as helping people to ‘live as well as you can until you can’t’ and it’s really very unclear how such messaging supports any of these.
They want more people to be diagnosed at an earlier stage so that more people can benefit from the two new drugs – Lecanemab and Donanemab – both of which have shown themselves mildly ameliorative only in the very early stages of Alzheimer’s, meaning people will still develop symptoms and see them become progressively worse over time, necessitating, adjustments, care and support. Ideally they would like people to be diagnosed before they have any symptoms of dementia at all. How does messaging which says a diagnosis of dementia amounts to dying overcome the fears people have about a diagnosis and motivate them to come forward at an earlier – even pre-symptomatic – stage?
They invest in research and innovation to come up solutions for daily living. Why should these be scaled and spread in the face of a narrative that says people can’t live well?
And they have in the past prioritised investment in social care and in particular in personalised care and support. But if your public messaging presents dementia as an inexorable loss of personhood, what use investing in personalised care and support? Why does what matters to you matter if you are judged to no longer be the person who whom it all mattered?
I don’t think fear drives (or has been shown to drive) public support or political prioritisation for any of these things. If it had, then why hasn’t the UK’s second most feared disease translated into its biggest priority?
Hope does. Possibility does. And I’m going to venture here that hope and possibility offers a far more powerful emotion than fear in the long-term pursuit of a cure too. In our fractured, fearful and pessimistic world, one thing has been shown to unite us – a desire to feel proud about something.
Promoting fear over hope is nothing to feel proud about.
Let’s feel proud about taking the fear out of a diagnosis of dementia.
Let’s feel proud about investing in social care, to support people and families.
Let’s feel proud about innovation to help people to live with a diagnosis of dementia.
Let’s feel proud about harnessing the opportunities of Artificial Intelligence, gene therapy, immunotherapy and prevention to push the boundaries of medical research in pursuit of new treatments and eventually a cure.
Most of all, let’s feel pride in supporting more people to live each day as well as they can, until they can’t.
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