We see a man giving a speech at his mother’s wake. It starts off as you might expect. But he goes on to tell us how his mother died multiple times in the eyes of those who loved her. When she became convinced her friends were stealing from her. When she asked him, her son, what his name was. When she looked straight through his dad. Then he says she died a final time surrounded by the people who loved her.
This is the latest ad from the Alzheimer’s Society. Anna had dementia. At the end, a voiceover from Colin Firth tells us: “With dementia, you don’t just die once, you die again, and again, and again. Which is why at Alzheimer’s Society, we’ll be with you again, and again, and again.”
I found it immensely uncomfortable to watch. Using death as a metaphor to describe the progression of a disease experienced by someone living struck me as horribly dehumanising. Throughout the ad we see Anna in her last years juxtaposed against clips of a vivacious younger woman; the message of the video seems to be, that was Anna then; this confused, silent character is who she is now. I’m not alone in this reaction; on social media many said they found it upsetting and offensive, alongside some positive responses from those who feel it spoke to their experience.
The ad – which the society says was made with significant input from people living with dementia – has been very divisive within dementia advocacy: some groups who were consulted have publicly distanced themselves from it, and Alzheimer Scotland put out a dissenting statement about “stereotypical and frightening images” that does not reference the advert but is clearly about it.
Since my initial viewing, I’ve changed my mind about it many times, after speaking to the chief executive of the Alzheimer’s Society about what they were trying to achieve; after reading through the reactions of people with early-stage dementia, and after talking to a psychiatrist who specialises in mental health in older age. Where I’ve come down is that I think the advert went too far, but that one of the many issues with the public discourse about dementia is that it can be overly sanitised.
It’s important to acknowledge what a difficult communications job dementia charities have. Many have compared the stigma around dementia to the stigma around cancer in the 1980s. I think it’s worse in many ways, because dementia leads to the degeneration of your mind rather than your body; it erodes your memories, your identity and your sense of self. There’s no getting away from what a truly frightening prospect that is. And as human beings, we are terrible at confronting the things we fear – ageing and death in general, but the progressive loss of self that dementia imposes adds a new dimension to already taboo subjects. We don’t talk anywhere near enough about the huge social and medical challenges dementia poses for society.
That’s reflected in public attitudes: Alzheimer’s Society research reveals that only one in 10 people know that dementia is the leading cause of death in the UK; 78% of us don’t know that one in three people born today will get dementia and only a third think urgent action is required on dementia. But also in our politics: just 31p is spent on dementia research for every pound spent on cancer research and politicians have failed to confront the implications for social care and mental health services. People are left to struggle alone, and there is under-investment in the scientific developments that could slow its progress.
There is a lot to communicate. Dementia charities need to tackle the stigma of having dementia, but also support and care for a loved one who has it. They need to raise public awareness of the impacts of dementia despite the fact that those untouched are disinclined to contemplate it; doing so is vital to getting politicians engaged.
It’s fanciful to pretend these objectives don’t sometimes conflict. There has been a strong emphasis on “living well” with dementia; that’s vital in terms of emphasising the dignity of people with dementia and their capacity for love and fulfilment that doesn’t switch off with a diagnosis. But the idea of “living well” might feel at odds – alienating, even – to someone whose partner has late-stage dementia requiring round-the-clock care, or who has become abusive. The Alzheimer’s Society’s media guidelines, published in 2018, are rightly very strong on tackling negative stereotypes of people with dementia, but left me wondering whether they also crowd out the space to talk about the difficult realities of dementia as it progresses – and in doing so risk letting politicians off the hook.
At the heart of this is a dilemma many charities face: how to accurately illustrate the challenges faced by people they support without being accused of doom-mongering? Lived experience is rightly prized, but how to account for the fact that it is people with less disabling aspects of a condition who are the most able and attractive advocates, whose interests are no less legitimate but may be very different from those who lack voice altogether? Dementia most obviously affects people who have it, but also profoundly affects those who love them, many of whom themselves experience a lack of support from friends and services; how do you enable them to have a conversation about how difficult it is, given the stigmas that exists around guilt, and the grief they experience as a result of losing aspects of a relationship and connection while their partner or parent is still living? Do we have to accept it might be all but impossible to do this without the risk of feeding some of the harmful stereotypes about dementia?
For me, the ad is too blunt and too bleak to achieve its objective of increasing public awareness: people need to be told the truth but also to be offered a little hope to avoid increasing a sense of fatalism which research suggests switches people off. But what I do admire is its willingness not to pretend that “living well”, while the right aspiration, is always a realistic one. And the fact that this advert barely made a splash in the media – imagine how much coverage a controversial cancer ad would have generated – itself reveals that we are not having the right conversation about dementia. In fact, we are barely talking about it all.
• Sonia Sodha is an Observer columnist
