WWe see a man giving a speech at his mother’s wake. It starts as you would expect. But he goes on to tell us how his mother died several times in front of those who loved her. When she became convinced that her friends were stealing from her. When she asked him, her son, what his name was. When she saw right through his father. He then says that she died for the last 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. That’s why we at the Alzheimer’s Society will be with you again and again and again.”
I found it extremely uncomfortable to watch. The use of death as a metaphor to describe the progression of disease experienced by a living person struck me as horribly inhumane. Throughout the ad, we see Anna in her final years alongside clips of a vibrant 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 disturbing and offensive, alongside some positive responses from those who felt it spoke to their experience.
The ad – which the association says was created with great meaning input from people with dementia – is deeply divided within dementia advocacy: some groups that were consulted have done so publicly have distanced themselves from itand Alzheimer Scotland has issued a dissenting statement on “stereotypical and frightening images‘ that does not refer to the advertisement, but is clearly about it.
Since my first viewing I have changed my mind many times, after speaking to the Chief Executive of the Alzheimer’s Society about what they were trying to achieve; after reading the responses of people with early dementia, and after a conversation with a psychiatrist who specializes in mental health in old age. What I’ve come to is that I think the ad went too far, but that one of the many problems with the public discourse about dementia is that it can be overly sanitized.
It is important to recognize what a difficult communication task dementia charities have. Many have compared the stigma surrounding dementia to the stigma surrounding cancer in the 1980s. I think in many ways it’s worse 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 escaping what a truly terrifying prospect that is. And as humans we are bad at facing the things we fear – aging and death in general, but the progressive loss of self that dementia brings adds a new dimension to already taboo subjects. are. We don’t talk nearly enough about the enormous social and medical challenges that dementia poses to society.
This is reflected in public opinion: research from the Alzheimer’s Society shows that only one in ten people know that dementia is the leading cause of death in Britain; 78% of us don’t know that one in three people born today will develop dementia and only a third think urgent action is needed on dementia. But also in our politics: fair 31p is spent on research into dementia For every pound spent on cancer research, politicians have failed to recognize the implications for social care and mental health. People are left to fend for themselves and there is too little investment in scientific developments that could slow down their progress.
There is a lot to communicate. Dementia charities need to tackle the stigma of having dementia, as well as supporting and caring for a loved one. They need to raise public awareness of the consequences of dementia, despite the fact that those who are unaffected tend not to think about it; This is essential to get politicians involved.
It is fanciful to pretend that these objectives are not sometimes in conflict. There has been a strong emphasis on “living well” with dementia; that is essential when it comes to emphasizing the dignity of people with dementia and their capacity for love and fulfillment, which does not disappear after a diagnosis. But the idea of ”living well” could be at odds – alienating even – for someone whose partner has advanced dementia and requires 24-hour care, or who has been abusive. The Alzheimer’s Association media guidelinespublished in 2018, are rightly very strong in tackling negative stereotypes about people with dementia, but I wondered whether they are also crowding out the space to talk about the difficult reality of dementia as it progresses – and in doing so, politicians risk to let the hand hook.
At the heart of this is a dilemma facing many charities: how can we accurately illustrate the challenges faced by the people they support, without being accused of nefarious behavior? Lived experiences are rightly valued, but how are we to take into account the fact that it is the people with less disabling aspects of a condition who are the most competent and attractive advocates, whose interests are no less legitimate, but can be very different than those who have no voice at all? ? Dementia mainly affects people living with dementia, but it also has a profound impact on those who love them, many of whom themselves experience a lack of support from friends and services; How do you get them to have a conversation about how difficult it is, given the stigmas surrounding guilt and the grief they experience from losing aspects of a relationship and connection while their partner or parent is still alive ? Should we accept that it is virtually impossible to do this without risking fueling some of the harmful stereotypes about dementia?
For me, the ad is too blunt and somber to achieve its goal of increasing public awareness: people need to be told the truth, but also offered a little hope to avoid increasing the sense of fatalism, which according to research scares people off. But what I do admire is the willingness not to pretend that ‘living well’, even if it is the right ambition, is always realistic. And the fact that this ad made little impression in the media – imagine the attention a controversial cancer ad would have generated – in itself shows that we are not having the right conversation about dementia. Actually, we hardly talk about it.