There have been two surprising developments in the last couple of months. The first was the announcement by the drug regulator, the American FDA, that it was to delay the approval of Ely Lilly’s new drug, donanemab. Donanemab targets plaques in the brain caused by beta-amyloid protein, the same mode of action as the FDA-approved lecanemab (Leqembi). The FDA is calling a meeting of its outside advisors to review the results of the drug’s clinical trial and evaluate safety and efficacy.

The second was the release of an advertising film by the Alzheimer’s Society that is the most dreadful, in the true sense of the word, that I have ever seen. It emphasises death and is so totally without hope or direction that you have to ask - what was it intended to achieve?

CEO of the Alzheimer’s Society’s CEO, Kate Lee, said in a statement that it was necessary to tell the ‘unvarnished’ truth about dementia because so many people think it will not affect them. In other words, it was designed to shock.

It wasn’t about fundraising, she made clear. Which is just as well as some donors told me they’d stopped their regular payments, declaring the film unhelpful and untruthful. (One Older Person’s Chaplain took the trouble to telephone.) Unhelpful, because it is entirely without hope. Untruthful, in that it implies the person with dementia dies in part at different stages.

The film ends with the narrator repeating, ‘when you have dementia, you die again and again and again and again… But we know from episodes of people regaining lucidity that that is not true. The person remains. To a secular eye it may be the ‘unvarnished truth’, but not to the Christian that honours the ‘personhood’ of the individual affected.

The advertisement could reverse years of progress in understanding dementia. In conversation on LinkedIn Professor Graham Stokes, clinical psychologist, author, and expert with over 30 years’ experience, wrote that the advertisement takes us back to the time ‘when there was a misguided belief that there was no person to appreciate for they were seen to have disappeared. Taken away by disease. How wrong we were. How can the inspiring stories of, and encounters with people living with dementia be ignored, for only by doing so can destructive attitudes be resurrected. The journey to affirm the personhood of people living dementia continues.’

The Alzheimer’s Society’s theme for many years has been ‘Living Well with Dementia,’ so why the huge reversal? Advertising uses a ‘stick and carrot’ approach, and this one is an example of the stick. A very big stick, possibly using fear to get people to sign up for the new NHS blood tests that detect protein deposits in patients’ blood that are said to be the ‘hallmarks’ of Alzheimer’s. It’s a theory that is controversial and ignores the fact that thousands of older people have these deposits but never go on to develop the disease.

If the test reveals that your brain has these deposits you may be offered preventative ‘treatment’ from one of the new ‘novel’ drugs, Leqembi and Donanemab. But experts deciphering the clinical statistics point out that the effects are so small as to be not noticeable. In the Donanemab trial, patients receiving the drug declined on average by 10 points on a 144-point scale that combined cognitive and functional scores. The placebo group who were not receiving the drug declined by 13 points.

This data was used by researchers to state that the drug slowed cognitive and functional decline by ‘more than one-third,’ and offered people ‘extra months’ or ‘up to one year of life’ without further disease progression.

Although the statistics from the clinical trials show 30 percent slowing of decline, the reality has been lost in the translation to subjective explanations and the benefits are proving harder to quantify than the potential harms. Many experts say the benefits are so minimal that they wouldn’t be noticed. The medical editor of the Guardian newspaper summed it up in a neat article.

A better way

The concentration on pharmaceuticals has taken attention from other, proven interventions that work well.

Dr Michael Bender, Consultant Clinical Psychologist and co-author of ‘Understanding Dementia: The Man with the Worried Eyes’, points out that by 2023 there had been a spend of over two billion dollars on 413 Alzheimer’s drug trials, and only one was approved. My italics. That amount could have funded health prevention programmes and a good deal of care, including psychosocial interventions that are proven to work. The lives of many people living with dementia and the family members caring for them would have been made bearable.

Psychosocial interventions are interactions with others in ways that can include other activities, such as music therapy, reminiscence therapy, group cognition strengthening, psychotherapy for caregivers, validation therapy (which focuses on the emotion beneath the person’s words), and mental exercise. The book, ‘Early Psychosocial Interventions in Dementia’ by Esme Moniz-Cook and Jill Manthorpe (Jessica Kingsley Publishers) is full of examples.

It’s what our Hummingbirds do with residents in our care homes, with frequent interactions personalised for each individual. Enjoying the company of others is one of the most powerful ways of preventing dementia in the first place, and of slowing its progress after diagnosis.