This is a short presentation maybe about 20 minutes and necessarily will move
reasonably quickly.
As many of you know your chance of having dementia depends on your age and
these are figures for Australia, so unless you’re in your 80’s you don’t have a very
high chance of currently having dementia but once you get to your 80’s and many of
us are going to it seems then you have quite a high chance of having dementia.
That’s the current risk of having dementia by age for non-indigenous Australians.
The picture for indigenous Australians is much worse than that.
The population is ageing – there are going to be more people over the age of 65 in
the future than there are now and that’s due to increased longevity and the current
population structure e.g. baby boomers. So as the population ages and given that
dementia is age related then there’s going to be far more people with dementia in the
future than there are now. There’s somewhat over a quarter of a million people in
Australia living with dementia now by 2050, there’s likely to be about a million people
with dementia in Australia.
It’s a non-trivial problem, takes up a lot of resources at all levels of government
particularly the Commonwealth. If you have dementia than you’re very likely to find
yourself at some point in time at a residential care environment – let’s use the term
nursing home as shorthand for that. This is the probability of being in permanent
aged care by age and gender for Australia from the DoHA technical paper just
recently released. This is not for people with dementia but probably now the majority
of people in nursing homes throughout Australia have dementia so this is a proxy for
your risk if you have dementia as well which is probably higher than these curves
suggest. You can see that if you’re in your 80’s or 90’s, if you’re male or female
particularly for females, that you’re quite likely to be in a nursing home.
This isn’t your lifetime risk of being in a nursing home. Your lifetime risk is a different
set of curves based on actuarial tables and probably approaches 50% for the most of
us now.
People with dementia as you know have problems with memory and thinking – we
call those cognitive problems but they also have quite prominent behavioural and
psychological symptoms and in discussions in the management of people with
dementia often little emphasis is given to these behavioural and psychological
problems and most emphasis is given to curing dementia, which we can’t do yet, or
improving the memory function, which we can only do modestly at present. But what
about these other symptoms which actually are more important drivers of nursing
home placement and provision of care in the community or in residential settings
than the cognitive problems are. So these behavioural and psychological symptoms
(BPSD) include things you can observe. Noisy behaviour, agitation, aggression,
pacing, problems with appetite and sleep and things that occur inside the person and
may or may not have external manifestations like delusions and hallucinations,
depression, anxiety, apathy etc. So these symptoms collectively are the focus of lots
of care efforts, both in the community and in nursing homes and quite expensive at
all levels of government. The prevalence of these symptoms is quite high and this is
the nicest study there is which is from Cache County, Utah. Most of the people are
Mormons – good living folk and this research has looked at the prevalence of these
symptoms according to whether the person had mild, moderate or severe dementia
and they looked at people living in nursing homes and living in the community so it’s
a total population sample in this county in Utah. You can see from this graph that
some of the symptoms vary with the severity of dementia. The red columns are for
agitation or aggression. You can see people with mild dementia (about 12%) seem
to have agitation or aggression, whereas in people with sever dementia closer to
35% of the patients are exhibiting that symptom. You can see similarly for apathy or
for delusions or hallucinations how they vary with the severity of dementia. It’s not
always a linear increase in prevalence sometimes some things decline as your
dementia gets worse. Anxiety seems to decline and perhaps delusions seem to
decline – probably because the brain is no longer able to generate those symptoms
as the condition causing the dementia gets worse and worse.
So these behavioural and psychological symptoms are very common at all grades of
severity of dementia and commonly the focus of care. But do they persist over time?
This is a complicated question but this study from the Netherlands shows that they
don’t tend to persist very much over time. In this study they assess the prevalence of
these symptoms at baseline and then every six months for two years – so they
assess them on four occasions. The first set of columns to the left shows you the
baseline prevalence of these symptoms, moderately high like we saw on the
American study. But the two year persistence scores are very low. Two years
persistence means that at every opportunity – that is every six months when the
questions were asked – did the person still have those symptoms. Most people
didn’t, so the symptoms came and went. If you did a cumulative prevalence were the
symptoms present at any occasion on the four occasions over the two years, you get
quite high levels of prevalence. So the symptoms come and go over time – quite
markedly so. Why is this important? It’s importance because if people do
uncontrolled studies of interventions, whether they’re pharmacological drug
interventions or non-pharmacological, psychosocial interventions to improve these
behavioural and psychological symptoms and they don’t use a controlled condition.
A placebo in the case of a drug or some other controlled condition in the case of
non-drug treatment, then you will get the impression that the treatment works
because there is a tendency for these symptoms to go away, to not persist. It’s quite
a trick if someone claimed their treatment works and they don’t have a proper control
condition or placebo then you can’t believe a word they say.
Now this is the money slide if you like. This is the slide from Sam Hollingsworth’s
paper last year in the Australian New Zealand Journal of Psychiatry looking at
antipsychotic drug use in Australia by age and gender based on PBS data. So these
are PSB prescriptions so not looking at private prescriptions here just PBS funded
ones. And what you can see is the female set of curves on the left and the male
curves on the right and each of the curves represents a different antipsychotic drug.
The drug which is most commonly prescribed is Olanzapine which is the solid line at
the top on each of the curves. Now the shape of these curves is very curious. First of
all young men who are here seemed to get a fair share of antipsychotic medication.
Perhaps those men have schizophrenia or bi-polar disorder (what used to be called
manic depression), perhaps they’re aggressive and difficult to manage and that’s
why they’re getting antipsychotic drugs. Why young women aren’t getting them is
anyone’s guess because they have the same prevalence of schizophrenia as young
men do.
What I’ve come to talk to you about today is this peak here. And this smaller one
here. What you can see is that older women in their 90’s are getting a huge dose of
antipsychotic medication. I don’t mean a huge dose in milligrams I meant are
commonly getting antipsychotic drugs prescribed to them. And older men to a lesser
extent. Why would people in their 90’s need antipsychotic drugs? Have they got
schizophrenia or bi-polar disorder? Well, probably not. Some of them might but not
many. So there must be some other explanation for this peak. What could it be? It
might be as you might guess that people in nursing home who exhibit behavioural
and psychological symptoms of dementia are getting treated with antipsychotic
drugs. And there is some evidence that this is true. John Snowdon has been doing a
series of surveys in Sydney nursing homes over the last decade or so and his most
recent survey was published this year in the Medical Journal of Australia. He
surveyed 44 nursing homes in the south west area of Sydney out of 48 nursing
homes in that district. So most of the nursing homes agreed to participate. Almost
2,500 nursing home residents within these 44 nursing homes, 28% were taking
antipsychotic medication regularly, not occasionally, regularly. And most were taking
modern antipsychotics, most were taking Respiradone or Olanzapine, those two
being the most commonly prescribed antipsychotics which were on that graph we
just saw. So it does look as if that those peaks in the graph for 90 year olds are
probably reflecting this. These are two entirely independent data sets so we can’t link
the two but nonetheless it seems reasonable to infer that that’s what’s going on.
Do these drugs work to treat people with dementia? They work to some extent. If you
treat 100 people with these drugs, somewhere between 15 and 16 to 20 seem to
show some sort of improvement. They’re not relieved of their symptoms of
behavioural and psychological problems but these symptoms are ameliorated to
some extent. However the trials are generally short duration for ethical reasons and
so it’s only very limited knowledge of the long term effects of these drugs in this class
of patients – people with dementia living in nursing homes. The drugs are known to
cause lots of adverse effects including these ones which are relevant to older
people; particularly the top 3; sedation, Parkinsonism and falls, and they kill you.
Meta-analysis that’s been done on clinical trials on antipsychotics and people in
nursing homes shows that there’s a relative risk of dying of 1.7. So there’s 70% more
cases of death in older people with dementia in nursing homes treated with
antipsychotics than older people with dementia in nursing homes not treated with
antipsychotics. And the mortality rates are 4.5 versus 2.6 on placebo. So there’s
quite a substantial increase in the rate of death and one presumes this is not a result
of public policy and wanting to turn over nursing home beds faster but an accident... I
hope. And it’s been estimated that for every 100 people with dementia treated with
antipsychotics there will be one death each 10 – 12 weeks. So we are balancing
somewhere between 15 and 20 people out of every 100 treated with antipsychotics
who have their symptoms ameliorated at least to some extent in the short term
against one death per every hundred people every 10 to 12 weeks that a hundred
people are exposed to antipsychotic drugs. So you would have to, if you were a
prescriber or a family member or a staff member, you would have to balance those
two things up the benefits of ameliorating the symptoms in somewhere between 15
and 20 people and the negative consequences of killing off older people in nursing
homes. These are the two drugs that seem to most relevant to this discussion
judging by the prescribing figures Olanzapine and Respiradone. The curious thing is,
despite the fact that as we saw in this curve that Olanzapine is the solid line
responsible for the biggest peaks, despite that it’s not approved for this indication.
Not meant to be used for this. The Pharmaceutical Benefits Scheme doesn’t allow it
to be used for this in fact. Respiradone, the next cab off the rank in that curve, is
approved as long as the patients with dementia have been trialled on nonpharmacalogical methods and these have been unsuccessful. So that means that
the patients should have been trialled on non-drug treatments for their behavioural
and psychological symptoms and these should have been unsuccessful. Is there any
method of ascertaining this? No. It’s just a wish.
Let’s say you were to stop in antipsychotic drugs in older people with dementia in
nursing homes what would happen? Well they did this in the UK. Clive Ballard and
his colleagues published in a prestigious journal for Lancet Neurology. They got a
bunch of people on antipsychotics with Alzheimer’s disease living in nursing homes
and they randomised them to continuing those antipsychotics or stopping them. And
they followed them over time and what happened was the curve separated which
means that in this case, that those that remained on the placebo were much less
likely to die than those who remained on the antipsychotic drugs. Remember these
are randomised so there is no essential difference between the two groups. It’s not
as though the ones who stayed on antipsychotics were more severely affected for
instance and might be more likely to die, no. They were very similar at the point of
randomisation. So if you stop antipsychotic drugs you actually prevent people dying
or you slow the rate at which they die. Now as a matter of public policy that might be
good or bad but it’s the humane approach to people living in nursing homes with
dementia. I would think that keeping people alive is probably a good thing but you
could argue that, I agree.
Now if you stop the drugs what happens to the behaviour? Does it get worse or get
better or stay the same? Well, the same people, Clive Ballard’s group in PLoS
Medicine published a few years ago, the results of that. If the nursing home resident
with Alzheimer’s disease had mild to moderate behavioural disturbance and you
stopped the antipsychotics there was no difference in their behaviour. It didn’t get
worse but it didn’t bounce back. Those residents who had severe behavioural
disturbance when you stopped their antipsychotics there was a trend for their
behaviour to deteriorate although it wasn’t statistically significant. But perhaps one
could argue that the sample size could have been possibly larger, or it might have
been significant. You can’t discount that the possibility of stopping antipsychotics in
people with severe behavioural disturbance might have a negative outcome for at
least some of those people. It’s an open question. This study didn’t prove it, but it left
an open issue I think. Now if you’re not going to use antipsychotic drugs in people
with dementia with behavioural psychological symptoms what might you do? Well
you could use one or both of the two main evidence based approaches. The first is
you could use behaviour management techniques to reduce the frequency of
problem behaviours or you could use caregiver training to reduce burdens of stress
or depression and improve coping amongst caregivers whether they are professional
staff in nursing homes or family members providing care in the community. Now
those two main evidence based approaches seem to be associated with a better
outcome overall over time. There are other specific interventions like playing a
person with dementia music that they liked in the past which seemed to have
temporarily modified behaviour for thirty minutes or so, but all of these specific
interventions only work for a short period of time. It’s these two evidence based
approaches that seem to have a more enduring impact on behaviour or its effect on
other people. So there are ways of dealing with many people with behavioural and
psychological symptoms and dementia which don’t involve drugs. The problem is
there are costs associated with applying those evidence based approaches and the
current set up in residential aged care in this country is not really designed to
implement these alternatives to drug treatments. In addition there are other things
that can be done and some of the better institutional settings do these already but
they’re not wide spread. You could institute person-centred care when the people
who are actually providing the care, personal care assistants, actually know
something about the person they are caring for. They know about their personality
before they developed dementia, they know about their occupation, their
relationships, their hobbies, their interests before they developed dementia, and they
can use that knowledge to personalise the care. And you could include the family
members, the relatives of the person with dementia in their care on a day to day
basis in the nursing home. Most nursing homes don’t do this because it mucks up
their system, you’ve got to get three meals out within 6 or 8 hours, you’ve got to get
the showers done, you’ve got to plonk them down in front of the TV and then the
staff disappear, so if you involve the relatives, that slows up that whole system. It
puts sand in the gears. So only the better places seem to do that. You could
implement structured activity programs. You could take people swimming, you could
take them to the art gallery, you could engage them in a whole series of interesting
and stimulating activities but of course that would take time and effort and creativity
and there’s a shortage of all those ingredients. You could create domestically scaled
environments rather than institutional environments but only the minority of nursing
homes have those. You could provide flexible care, where you provide the personal
care that’s needed on a time scale that’s relevant to that individual rather than
according to the fact that you need to get all showers done by 7am, regardless of the
temperature in Canberra that morning. So a lot of aggressive behaviour occurs by
the very fact that you’re not providing flexible care, so you’re providing personal care
at a time which is suitable to the institution but not to the person receiving the care
and they resist the care and as a result, they hit or scratch or bite or whatever it is
that they do. And we could improve professionalism in care staff in residential care
settings.
A couple more slides to go, but at this point I think I can summarise by saying
increased longevity and intrinsic structure of the Australia population means that we
are going to have many, many more people with dementia over the next few
decades, there’s a high probability that these people will get into nursing homes,
many of them have challenging behaviours which often drive the nursing home
admission but although they’re prevalent, they’re not always persistent and
antipsychotic medications seem to be used excessively. There’s increased mortality
associated with the use of these drugs but discontinuation is often successful, at
least in half the patients in this trial. There is insufficient use of non drug
interventions and obviously, and the productivity commission is grappling with this, at
the moment there are problems with the funding model.
Some policy suggestions for any of you who might be involved in setting policy or
recommending it, we could use the rate of antipsychotic drug use with dementia as a
quality indicator for nursing home audits, we could set targets to reduce
antipsychotic use in people with dementia in Commonwealth supported programs,
we could support targeted training programs for the relevant professionals and their
students, we could mandate a formal curriculum for non-pharmacological
interventions by personal care staff and an annual training budget to actually fund it,
we could improve access to clinical psychology inputs to people with dementia in
nursing homes and at home. We can’t do that through the better access to mental
health system at the moment. We could await the productivity commission report,
hopefully it will produce a funding model that will evolve over time and will allow
improved psychosocial interventions but this will have cost implications and it won’t
be possible to do this using the existing funding structures.
The national prescribing service is getting involved in antipsychotic medication. I
hope they are going to pursue some vigorous pharmaceutical detailing in relation to
use of antipsychotics in very old people with dementia. We could augment the
Dementia Behaviour Management Advisory Service (DBMAS) which already exists
and in many places, do a great job. We could develop properly funded and
supported psychogeriatric nursing homes in each region to manage the most
challenging behaviours and people that the ordinary aged care settings can’t
manage. Now I’ll put it in brackets, (we could prosecute the off label prescribers, I
don’t think that’s going to win anyone an election but you could do that in theory).