What to read about dementia

DEMENTIA IS A global emergency. More than 55m people are estimated to live with it. That is more than can be looked after humanely. Most new cases are in the developing world, where populations are growing and ageing and resources are stretched. Yet health authorities do not regard it as among the world’s most pressing medical issues. One reason may be that the biggest reason for its rise is something to be cheered: in most countries, people are living longer. And dementia does not arrive at the viral speed of a pandemic but at the plodding, relentless pace of demographic change. Its full effects will not be felt until far into the future. The number of people with dementia is expected to rise to 82m by 2030 and to more than 150m by 2050. Despite recent advances in treatment that may delay the progress of Alzheimer’s—the most common of the dozens of causes of dementia—no cure for the condition is in the offing. And no society has devised a sustainable way to provide and pay for the care that dementia patients will need. Yet it is a condition almost everyone in the world has some contact with. Here is a selection of reading about dementia that provides an overview of the many different aspects of the subject.

Where Memories Go. By Sally Magnusson. John Murray Press; 432 pages; £10.99

Many people have written poignant memoirs of caring for loved ones who have lost to dementia much of their memory and their ability to lead independent lives. Sally Magnusson’s account of her mother’s last years, lived with Alzheimer’s disease, stands out for its effort to explain the broader picture. It is a desperately sad and occasionally funny story of watching a loved one drift away. And it is one that will seem familiar to many readers. By one estimate, 1.7% of 65- to 69-year-olds live with dementia, and its incidence doubles every five years to the age of 90. By another count, at the age of 85 between a third and half of people have dementia. Ms Magnusson, a journalist, turns her own family’s story into a very helpful primer—on the history of Alois Alzheimer, the German pathologist for whom the disease is named; on its neuropathology; on the difficulties of caring for someone with the condition; and on the threat dementia poses to health- and social-care systems. In a succinct and readable way she fulfils the promise of her subtitle, explaining why dementia changes everything.

The XX Brain. By Lisa Mosconi. Penguin; 368 pages; $20. Atlantic Books; £10.99

The best way to reduce the risk of developing dementia is not to be recommended: die young. A second tip is equally useless: don’t inherit a genetic predisposition to Alzheimer’s or another degenerative brain disease. A third is sexist as well as unhelpful: don’t be a woman! Women are at greater risk of dementia, and not just because they live longer. As Lisa Mosconi, a neuroscientist who runs an Alzheimer’s-prevention programme in New York, notes in this informative book, “Women in their sixties are about twice as likely to develop Alzheimer’s over the rest of their lives as they are to develop breast cancer…A 45-year-old woman has a one-in-five chance of developing Alzheimer’s during her remaining life, while a man of the same age has only a one-in-ten chance.” The reasons for this difference are many and not fully understood, in part because it has been little studied. Women tend to be poorer and less well-educated, and are at greater risk of brain injury from domestic violence. Dr Mosconi’s research has focused on the role of hormones and the female reproductive cycle. Her book is about what women can do to reduce their risk.

World Alzheimer Report 2023–Reducing Dementia Risk: Never too early, never too late. Accessible online, here

Dementia was long seen as being as ineluctable as the weather. If that storm has you in its path, you are never going to outrun it. Indeed, some sorts of dementia are hereditary. People with Down’s syndrome, for example, will almost inevitably develop Alzheimer’s if they live long enough. And some people have a genetic make-up that makes developing dementia, if not inevitable, far more likely than for others. But recently attention has focused on the many risk factors that are “modifiable”. The 2023 edition of the “World Alzheimer Report”, an annual publication of Alzheimer’s Disease International, an umbrella group for national dementia associations, summarises the latest research on this. (Simon Long, an editor-at-large at The Economist, is a co-author.) Some of the risk factors are obvious: engaging in sports that entail repeated blows to the head, for example. Many risk factors duplicate those for cardiovascular and other diseases: smoking; obesity; lack of exercise; and high levels of cholesterol. Some, such as a lack of education and air pollution, are modifiable but are beyond an individual’s control. Some are surprising. Perhaps the single most effective preventive measure would be for more of the hard-of-hearing to wear hearing aids. Earlier editions of the “World Alzheimer’s Report” have focused on the disease’s global impact (2015), the state of research (2018) and public and official attitudes (2019).

The Great Demographic Reversal. By Charles Goodhart and Manoj Pradhan. Palgrave Macmillan; 260 pages; $29.99. Springer Nature; £24.99

Many people live long after their cognition has become impaired. All of them will need help with their everyday lives. Those with the most severe dementia may need care 24 hours a day. That raises two obvious questions: who is going to do the caring? And who is going to pay for it? This bracing book by two economists puts dementia care in the broader context of the wrenching transformation many countries will undergo as their people age. An estimate cited by the World Health Organisation put the annual global cost of caring for people with dementia at $1trn in 2018, rising to $2trn by 2030. That ignores the cost of lost production as people leave the workforce and what is lost by having the condition, which is the most important cost. Charles Goodhart and Manoj Pradhan suggest how that might be calculated: surveys could be used to analyse the costs and benefits of programmes to prevent, delay or find cures for dementia. They could ask adults how much of their income they would pay to reduce the risk of developing dementia, as those risks mount with their age. The results would be subjective, but better than the nothing that is available now. As for the costs of care, there are reasons to think that the WHO’s estimates may be too high. A lot goes on labour costs, and the estimate’s underlying assumption—that the supply of labour will rise in tandem with the number of people with dementia—is questionable. But that is not good news. Lower-than-expected spending also means that many dementia sufferers will not get enough care.

Literary portrayals

Dementia has always been part of the human condition, and so has always featured in literature. Lisa Genova’s moving novel “Still Alice”, published in 2009, about a woman with early-onset Alzheimer’s, was turned into a film starring Julianne Moore in 2014. The hapless Mrs Smallweed in Charles Dickens’s “Bleak House” would be a comic figure were it not for the bullying she endures from her blackmailing husband. In 2021 the British actor Sir Anthony Hopkins, then 83, won an Oscar for his portrayal in “The Father” of a man losing his cognitive powers. More than three decades earlier he was a brilliant King Lear. “I fear I am not in my perfect mind,” says Shakespeare’s tragic hero. Critics, actors and clinicians have long debated Lear’s diagnosis. Conducting research to help him play the part, Simon Russell Beale, a British actor, concluded that he probably had Lewy-body dementia, a form that accounts for about 10% of cases. As with so much else about the human condition, Shakespeare understood.

Also try

In 2020 The Economist published a special report on dementia and a leader on how to deal with its rising prevalence. A big gap in our reading list is anything covering the latest research into treatments for dementia. That is because the field is developing so fast. We have written about the first drugs that offer hope of delaying the advance of Alzheimer’s and about diagnostic techniques, which are also progressing fast. This speculative article imagines what the world would be like in 2050 if dementia became preventable and treatable. As a leader argues, efforts to slow ageing are making progress. This edition of our Technology Quarterly explains how. ■