Dementia: we shouldn’t expect miracles from drug cures

The media do love to run reports about wonder drugs.  The latest is aducanumab,  which is being widely reported as a breakthrough in the treatment of Alzheimer’s disease.  The Telegraph   hails a ‘new drug that halts mental decline’.  The Mail headline asks:  Could this be the end of Alzheimer’s?  Revolutionary drug ‘may stop the disease from ever developing.’  For those with access, the actual report of the trial is in Nature.

There are several reasons why this is over-hyped, and it’s not just that this is based on a small sample from first stage trials.

  1.  Dementia is not a disease, but a syndrome; the symptoms of dementia are known to be the result of a variety of  different pathologies.
  2. It’s far from clear that Alzheimer’s is a single disease with a common cause.  It’s widely used as a residual category for dementias that have not been explained in other ways.
  3. It’s not clear how far the amyloid-β proteins that the drug is removing are actually responsible for dementia.  It’s a plausible hypothesis; but, as point 2 implies we should expect, there are some apparent cases of Alzheimer’s without amyloid-β plaques, and because the proteins (Aβ and tau) can build up for 15-20 years without symptoms emerging, the presence of the proteins does not mean that the person with a build up will suffer  dementia.
  4. It’s  not clear that whether, if the hypothesis is correct, the plaques impair cognition which might be relieved,  or cause permanent  damage.  This study claims, with few direct details,  that cognitive decline is slowed – but the comparison they make is not between drug receipt and placebo, but between those cases who had both received the drug and recovered better from plaques from those who received the drug without that effect.

Lastly, it ought to be noted that many people dropped out of the trial, at least 20 because of side effects.  The way that drug trials work – or should work – is that the tests should be able to refine the identification of those for whom the drug is appropriate, and those for whom it isn’t.  That takes time and good science, and hype and the search for miracle cures tends to get in the way of that.

Additional note, 5th November 2019:  The i newspaper carries the page 1 headline:

The woman who defied Alzheimer’s: Patient with rare genetic mutation raises fresh hope that a cure for dementia can be found.

I started to cover this on the blog, but this earlier post already says what needed to be said.  All together, now:  there is no cure for dementia.  The much-maligned NHS website says it plainly:

There is currently no “cure” for dementia. In fact, because dementia is caused by different diseases it is unlikely that there will be a single cure for dementia.

Further additional note, 6th November 2021: 

New Scientist has finally caught up with the argument.

 “Alzheimer’s, as currently understood, is really not a single disease. … This new approach comes not a moment too soon … Tunnel vision has held us back for too long.  With this new approach, a single blockbuster drug might well be out of the picture, but instead, there is a real possibility that we could dismantle Alzheimer’s by a thousand cuts.”

Making pensions more universal: a few wild guesses about costs

Following discussions about the potential for extending universal pensions in Scotland, I’ve been putting together a few back-of-the-envelope calculations about costs.  The figures I’m drawing on aren’t reliable, for all sorts of reasons: the sample surveys can mislead when the numbers are very low, the figures aren’t consistent, it’s not clear how many people would actually receive their entitlements and we’d still need to consider the implications for Pension Credit.

The universal pension for people over 80, Category D of the State Pension, goes to people whose pension entitlement is less than the level of the pension, currently £69.50 a week.  I’m going to call that 50% of the basic pension, though actually it’s a bit more than that.   At present there are 2,700 recipients of Category D Pensions in Scotland (though if you look at the breakdowns you’ll get an inconsistent count  which suggests that there might be more than 3,200 claims).   If we wanted to increase Category D Pensions for people over 80, more people would be entitled;  I reckon that topping up the existing Category D pension to 75% of the basic state pension could cost the Scottish Government about £44m, topping up to a full pension might cost up to £78m.  It should cost much less if we got back the savings to Pension Credit under the ‘no detriment’ principle, but I’m not sure I believe that the DWP and the Treasury will honour that principle.

Beyond that, there’s the option of extending the universal pension to people who are younger than 80.  Extending the existing category pension to people aged 75-79 wouldn’t cost much – in Scotland there are only about 500 people in that age group who get less than 50% of the state pension, and the top up should cost less than £2m.  Bringing them in to a more extended scheme  at 75% of the basic pension would cost  a lot more, probably £47m, because there are nearly 40,000 people in that income bracket, and taking it up to a full pension would cost up to £87m.

The point of all this is, of course, to say that Scotland now has the chance to do things with benefits that are about much more than transferring administrative responsibility.  I’m hopeful that they will.

Coercing people with dementia

A report from Sweden caught my eye.  In Sweden, the law forbids restraining older people with dementia  in hospitals and care homes.  A newspaper, Expressen, has argued that this is unrealistic and unmanageable – they argue for “common sense”.  “It’s a crazy system in which members of staff can be punished by law for caring for confused elderly patients if the supervisory authorities find out about it.”  (The report is here, in Swedish – the first link, in English, has most of the point, but I fed the article through Google Translate to get the gist.  The translation says that allowing people greater personal freedom is “dangerous and inhumane”.)

This led me to a fascinating research paper in Nursing Ethics, published in 2013.   (I have only given the Pubmed reference in the link – the full article is restricted to subcribers.)  Based on qualitative, open questions, the research identifies three main classes of response.  Coercive measures include mechnical restraints such as bed guards, safety belts and locks, non-mechanical restraints (mainly by nursing staff) control through medication, and electronic surveillance.  Preventative measures cover the same sorts of thing, but used with consent or for limited periods.    Then there are strategies to adapt to greater freedoms for people with dementia – extra staff, better training, risk assessments and adapted procedures.   It seems that many of the respondents do, knowingly, break the rules in some respects.

It doesn’t follow, however, that this is bad law.   To be effective, a law has to be enforceable.  Once  adjustments are made for ‘reasonable’ breaches, it becomes difficult to know when the law applies and when it doesn’t.    No-one is going to prosecute a nurse who takes a patient by the arm to lead them back to the ward – but if the law is changed to allow for that, and a few hundred other possible actions, it won’t work at all.  The substance of the Swedish law is right – people need to be treated with dignity and some personal autonomy.  The more vulnerable the person is, the more that protection is needed.

A pensioner goes walkabout

A report in the Dundee Courier this morning concerns a manhunt (or womanhunt, if you prefer) for an 86-year old  from Dunbartonshire.  When her care workers arrived at 7 am yesterday, she wasn’t there.  A search has been mounted with police dogs, a helicopter and the co-operation of the Ministry of Defence.  It’s not unusual for the police to be involved in searches for missing pensioners – in a case last year in Birmingham, they”searched the local area, made enquiries with relatives and checks with taxi firms, public transport and health care providers” – but the scale of this search raises questions about how we ought to respond.

There is nothing unusual about people with dementia going out.  People with dementia tend to do things that they’ve done throughout their adult life.  It’s often the context that makes the actions seem disturbed  – people going for a walk because they think they’d like to take a walk, cooking in the middle of the night, going to the shops when everything is shut, lighting a fire when they’re cold, deciding to visit their family while not remembering that their family don’t live where they used to.   In the bad old days, which are not that long gone, older people would routinely be incarcerated in psycho-geriatric wards, typically with locked doors.  When we committed ourselves to keeping people in their own homes, we took on a degree of risk.

What kind of response would be proportionate?  I don’t know; I don’t even begin to have an answer.   But there has to be a better way than helicopters and dogs.

Old people in crisis

The maintenance of old people in their own homes for as long as possible has been an objective of community care policy since at least the 1960s. A Ministry of Health circular stated in 1962 that:

“Services for the elderly should be designed to help them remain in their own homes for as long as possible.” (1)

There is, however, a concealed implication in the policy. The implication is that the time may well come when it is not possible. The idea of care in one’s own home is based in a dichotomous model of care, in which people receive care either in their own homes or in some kind of institution. The effect has been to postpone relocation into residential care or purpose-built accommodation until the old person faces some kind of crisis, when it is difficult to adjust to changes in circumstances. For many old people, the effect is the reverse of promoting independence: they are forced into situations where they have no option but to become dependent. Half the people coming into residential care come from hospital, because they cannot return to their own homes; decisions to enter residential care are largely taken not by the old people themselves, but by professionals or carers.

There is a dilemma in the aim of promoting independence. Independence is generally taken to mean non-intervention and non-dependence; people are independent for as long as they do not depend on others for their care. People preserve independence, consequently, by refusing services until they can refuse them no more. There is something deeply wrong with this concept of independence, and it might be helpful to start using another, slightly less tainted word: the idea of autonomy. People act autonomously when three conditions are satisfied: they are able to make decisions for themselves, they are not constrained, and they have options to choose from.

We should not be looking, then, to keep people in their own homes for as long as possible, because that is the route to crisis. We need to be thinking, instead, about how people’s autonomy can be maintained to the greatest possible extent. One option is not to offer care in someone’s original home, but to think of more flexible and varied residential provision. Core and cluster units, or “very sheltered” housing, bring people close enough to services to make it feasible to deliver long-term continuing care without a further move. If old people are encouraged to relocate, not at the latest possible point, but at the earliest, they can settle, form relationships and communities, and have a reasonable chance of maintaining their situation without having to move on later. Moving as early as possible is the exact opposite of care in one’s own home for as long as possible. It is not right for everyone – no policy ever is – but it has a great deal to commend it. Moving early increases independence, broadens choice and minimises disruption of the most vulnerable. Moving late reduces independence, denies options and puts people at risk. This policy is long overdue for a rethink.

Note 1. 2/62, Development of Local authority health and welfare services.