12 Special reportDementia The EconomistAugust 29th 2020
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few monthsbefore Vera mistook her grandson for a coconut,
her son came by with someone she did not recognise. He was
indeed a stranger, a local solicitor. He gave her a paper to sign, hav-
ing first checked that she was fully aware of what she was doing,
indeed, “as sharp as two tacks”. Thus did she sign away her money,
property and decision-making rights to her son, this writer. The
solicitor was right to think that he had only benevolent intentions.
But this was a process, like many others, in which the rights of peo-
ple with dementia can easily be forgotten.
The dilemmas start with diagnosis. With no cure on offer, and
diagnostic tools crude and capable of getting it wrong, not every-
one thinks people should be told they have early-stage dementia.
Some may cope perfectly well with mciand lose confidence only if
given a diagnosis that sounds like a brain-death sentence. But
most charities argue that early diagnosis is both their right, and
helpful in making care arrangements—and indeed plans to hand
over decision-making in good time.
In fact, relinquishment of legal rights is covered by strict laws,
and is used more often to protect than to exploit. At some point,
people with advanced dementia need help in making even basic
decisions. But some countries now ensure greater protection for
those signing away their rights. South Korea has amended its
guardianship law from one with only the option to surrender all le-
gal rights into one where “full” guardianship is a choice, with oth-
ers allowing specific sorts of decisions to be delegated.
These decisions can be matters of life and death. Suppose
somebody wants to live but refuses life-saving medicine. Or sup-
pose they cannot bear the thought of becoming totally dependent,
helpless and confused and sign an instruction that they do not
want to be revived if seriously ill, but then change their mind. Su-
san Cahill, of Trinity College, Dublin, argues in her 2018 book, “De-
mentia and Human Rights”, that often “the ‘best guess’ of a trusted
and chosen supporter, based on all the knowledge gathered about
the person’s past and present wishes, hopes and aspirations for her
life, values and beliefs, is the most that can be achieved.”
The problem is most acute in countries where euthanasia or as-
sisted suicide is allowed. In 2017 in the Netherlands 6,585 people
died in one of these ways, with 166 having early-stage dementia
and three advanced dementia. That so few reached the advanced
stage is not surprising. People often write “advance euthanasia di-
rectives” (aeds) saying they want to die if they can no longer recog-
nise members of their own family. But by then, they may not grasp
that they are going to die and be unable to repeat their wish; or,
such is the human capacity for adaptation, they may have recon-
ciled themselves to impaired cognition and no longer want to die.
The law permits euthanasia in cases of “unbearable suffering”. But
for severe dementia, that may be impossible to prove.
The Dutch law was tested last year. Prosecutors brought charges
to seek clarification, rather than punishment, for a doctor who was
seen to have acted with the best intentions. The patient was a 74-
year-old woman with severe Alzheimer’s, who four years earlier
had written an aedrequesting euthanasia rather than go into a
care home. But she added that she wanted “to be able to decide
[when to die] while still in my senses and when I think the time is
right.” With the consent of her family, the doctor gave the woman asedative before the final act. But she woke up and had to be re-
strained to receive the lethal injection.
Such choices are agonising, pitting the rights of a person with
unimpaired faculties against those of the same person with ad-
vanced dementia. The consequence, as can be seen from the Dutch
numbers, is that people have to choose a shorter life than they
might otherwise have lived, to be sure of being able to decide when
to end it. The only cure for dementia, after all, is death.
Ethical dilemmas such as these seem insoluble. But that they
are being confronted is a sign that attitudes to dementia are chang-
ing. Whether the condition is seen as an inescapable part of the
ageing process, or as a symptom of a common disease, there is a
tendency to let it define a person. Of all the stigmas it carries, per-
haps the worst is the prejudice that people with dementia are less
than fully human. They are often talked about, in their presence,
even by those who love them, as if they are not there.
So many covid-19 victims have had dementia that the pandemic
might have prompted soul-searching about these attitudes. Yet it
has not. Many families worry that, when patients are selected for
access to scarce medical resources, those with dementia come last,
based on questionable assumptions about their quality of life. If
and when a covid-19 vaccine becomes available, the same issue
will arise: will those with dementia be first to get it, as among the
most at risk? Or will preference be given to
other vulnerable groups? Nobody is going
to argue that those with dementia matter
less than others. So public debate on these
issues is almost non-existent.
Before covid-19, campaigners had rea-
son to believe that they were making pro-
gress with the argument that dementia is
not an inevitable feature of ageing but a
disability that should be treated as such.
And it seemed that governments were ac-
cepting that dementia is a global emergen-
cy, arriving with the remorseless logic and unstoppable force of
demography: longer lifespans and a shrinking share of the popula-
tion of working age. Covid-19 may have made a difference in the
cruellest of ways, by killing hundreds of thousands of people with
dementia, and, more hopefully, by encouraging public-health
campaigns to resist a return of the pandemic that will, incidental-
ly, protect more against dementia. Yet the fundamental problems
will remain: most important, not enough people to care for the
tens of millions with dementia, but also not enough resources for
understanding, ameliorating or curing the condition, or for look-
ing after people who have to live with it.
Optimists may point to the covid-19 pandemic to argue that it
shows how much can be achieved when the scale of an emergency
is recognised and resources are thrown at it. Perhaps more realisti-
cally, it has given one more reason for policymakers to be more
preoccupied by another looming emergency instead. 7Stillhuman
Dealing with dementia raises agonising ethical dilemmasEthicsThe problem is at
its most acute in
countries where
euthanasia or
assisted suicide
is allowed