Tackling the challenge of elder abuse in dementia cases – UCL Lunch Hour Lecture

Tackling the challenge of elder abuse in dementia cases – UCL Lunch Hour Lecture


Hello, I think we should make a start. Welcome to UCL’s lunch hour lectures. My name is James Neal.
I’m the host for today’s lecture. Apologies, as I said to some who may
have come here for a different lecture. That’s what happens when you print
the booklet a long time ahead. It is difficult to clarify that.
But we have a fantastic lecture ahead. I would like to introduce
Dr Claudia Cooper from UCL psychiatry. She’s been working at UCL on this
research theme for about 14 years and she is also a psychiatrist
with the NHS and I’m sure what she has to say
will be of great interest to all of you. Thank you. Claudia. Hello, thank you for coming. I’m going to talk to you today
about elder abuse which is a topic
that has been fascinating me and the people I work with,
for the last 12 years. I’m going to try and explain to you
in the next half an hour what it is that we have found out, and what we find so interesting
about this topic. The topic, essentially of how humans
behave to each other, and specifically, how people
behave well and less well, when caring and looking after
older people. The first thing to say about abuse is it’s been variously defined but fundamentally it’s when somebody’s
human or civil rights are violated. There’s nothing fundamentally different about the fact that it’s elder abuse. Any group in society who are vulnerable or any situation in which there’s
a power differential fundamentally, some people can in certain circumstances
be prone to abuse. We’ve talked, been talking for longest
I suppose, about child abuse and in about 1975, somebody published
the first scientific paper on elder abuse
called ‘Granny battering’. That’s not a term
that we would use now, but that started off the modern period
of research on elder abuse, and people with learning disabilities, or who are vulnerable
for other reasons in society, can also be prone to abuse. Whether that’s intimate partner
violence, abuse within relationships, or sometimes even with abuse
in the workplace, anywhere where there is a power
differential, abuse can come. I thought I would highlight today,
ten things, that I think are interesting
about the subject of elder abuse. Ten take home messages. The first one would be that;
that abuse is abuse. There’s nothing inherently different
about the processes and systems depending on who it is
that is abused. What do we mean when
we talk about elder abuse. There are different sorts of abuse and perhaps the most common
is called verbal or psychological abuse. And this is often seen. It’s the most common abuse that family
carers of people with dementia report. So when you’re caring
for someone for long hours and you might occasionally find yourself
screaming and shouting. Sometimes people talk about
ignoring somebody rather than meeting their needs. That is psychological or verbal abuse. I’ve used a few quotes
to try and illustrate this from a study we did
where we went to care homes. I remember it was in the middle
of the Summer Olympics in 2012, and we went around
all care homes talking to people, talking to care workers
in those homes, about the sorts of care that they gave
and when care was good and went well, and also, when care went badly. We said to them, are there times when
you feel the care you give are abusive? They spoke to us honestly about that. Here are some of the things
that they said: somebody talking about ignoring
somebody that was asking for care, said, “it is not to do with people
being deliberately nasty, you actually
don’t have the brain capacity to assess all three things
at the same time, one person is going to get fobbed off”. This is a care worker describing how
they have three things to do at once and so they ignored one thing. that brings us to what I think is one
of the second take-home points, which is that abuse
is actually the name of the behaviour. When you talk about abuse
or an abuser there’s a tendency to think
of the most severe cases and of the abuser being somebody
that’s been deliberately nasty and should be blamed and shunned
rather than helped. Actually abuse is inherently defined
as a behaviour. Intent is something
that our legal system defines so whether or not you
deliberately meant to be abusive it’s something that is decided
in a court of law sometimes, and whether or not you should
really be to blame for doing that is something that society determines. The other type of abuse which is
some of the most serious types of abuse, is physical abuse. This reminds me of a case
recently in a care home. I went to see this lady and she was
in a wheelchair and she was strapped in, very much like that man is,
and she said “This seat belt is very uncomfortable”, so, we undid it, and I mentioned it to the carer and she
said “We just use it to transport her”. Then I thought I’d go and say
goodbye to this lady in the lounge because I was worried about her.
I went to say goodbye and there she was and she had
the seat belt done up again. I went and said something to the carers, and it turned out she had that seat belt
on for quite a lot of the time, and the carers said that she needs it
otherwise she will fall. Often this is the situation
that we’re in clinically, where people say, I have to do that
because this would be worse. The answer in many different situations
is generally that that’s unacceptable. We need to think of a way
to manage this situation where that person’s human rights,
and right not to be strapped in, can be respected, but that also
they don’t fall on the floor. That can be a common situation, people do things as they feel
they have no choice, and part of what we have to do as a
clinical service is open it up and say, this can’t be right, so what are
the choices and what should be done. There is a picture
there of some tablets. There’s been quite a lot talked
about recently about chemical restraint and the use of antipsychotics
and sedatives, particularly in people with dementia, solely for the purpose of controlling
behaviour and sedating. The fact that that is wrong and there’s
been a real move in dementia prescribing not to use these sedative and
antipsychotic drugs that can cause harm. That’s been a success story
in old-age psychiatry recently. If you look at the graphs of prescribing
over the last five to ten years, they go down,
certainly between 2010 and 2015, we’ve been prescribing
less of these drugs, and hopefully that’s because we’ve been
thinking about other ways of managing behaviour. We tend to talk about abuse and neglect
suggesting that it’s seen as different, but neglect is common. This is an example
that the carers talked to us about. Some carers will give them two spoons
and the food will be chucked, so if somebody is not able
to say how much food they want for lunch a stressed, or busy, carer
might stop feeding them before they had enough to eat. Neglect can be all sorts of things. Neglect can be not giving anybody any form of social stimulation, leaving people
in their rooms for long hours and making them wait too long for care,
all sorts of things like that. Here are some other types of abuse. Financial abuse is all too common, and it’s a bit different
to other forms of abuse. Whereas physical and verbal
and psychological abuse in dementia often come from that the stressed carer
who’s at the end of their tether. Financial abuse isn’t an acceptable
end result of feeling stressed, that the end of your tether,
it tends to be something different but something that is common. Institutional abuse is where people are
following the ways of the institution and consequently,
individual rights are not considered. There’s a video of a real situation
that was covert filmed. I think it’s on one
of the elder abuse charities shows, where a man has soiled himself
and is asking to be changed, and there is a carer
saying to the other carer “No changing during mealtimes,
he knows that, we all know that.” A feeling that there’s a rule that might
have been there for a reasonable reason, you don’t want to change incontinence
pads in the middle of dinner. But actually, the result of that,
in that situation is clearly that person
is being in a neglectful situation because nobody wants to eat their lunch while sitting in
a dirty incontinence pad. Why does abuse happen? Of course, one has to be careful
not to sound like we’re saying, well this is inevitable, it’s acceptable
because this is why it happens. There do seem to be certain situations
in which it is more common. Coming back to what I said
at the beginning, fundamentally
this is a power imbalance. There’s generally a perpetrator
and a victim. The reasons that older people
are often more vulnerable to abuse, dementia is a very common one, I put challenging behaviour there,
I was pulled up the other day, by one of the research network
volunteers from the Alzheimer’s Society who said the term
‘distressed behaviour’ was better because challenging
does not take account of the fact people with dementia behave in certain
ways because they are distressed. Dependency, vulnerability
and dementia all mean that people may be at risk of abuse if in situations
where that might occur. And the perpetrator as well some people are more inclined, perhaps
due to personality or mental illness, to behave abusively
in certain situations. Carer stress can often be a big part
of the end reason this happens. The relationship between the perpetrator
and the victim is important and I can give you
many examples of this. One that we have been thinking about
recently in care homes is about why abuse
might be very common in that setting. We’ve been thinking about whether
that’s something about the personhood of people with dementia. If you are caring for somebody with
dementia who you have known for 50 years you know that person,
you know them from when they were young and you see them then as a person
who has developed dementia. But if you are a care worker and the
person arrives with severe dementia, can you still see the person, do you still understand them
as the person they are? If you as a care worker start
to de-personalise that human being and not respect them as a human, perhaps abuse might be more common. The other thing, the reason I’ve put
time and quality for relationships is that there has been research showing
that in countries such as South Korea, when they looked at who is most likely
to abuse, it was daughters-in-law, whereas in the UK it was spouses. it seems pretty clear that that’s not
about the fact that spouses in the UK, that we’re inherently more abusive or that daughters-in-law
are more abusive in other countries. It’s about where people with the most
severe needs with dementia are looked after and who by. Whereas most people in the UK with
dementia are cared for by a spouse, daughters-in-law tend to have more
of a role of caring in some countries. Certainly, the society and environment
and legal environment in which a situation is operating affects how likely abuse is to happen
and how likely it is to be detected. There was a case in a hospital
not so far away, where a large amount of abuse that had
gone undetected for a long time, was reported not by the doctors,
not by the relatives, not by the nurses, but by the window cleaner. I think that’s a really powerful example
of how sometimes it takes people looking in on a situation to see it for what it is, and the more that a society
or an institution is open and has people coming in, and if you are a care home with
volunteers, and lots of people coming in to give new perspectives
on the situation, the less possibilities
for abuse to flourish. This is a rare celestial event and this is how in the NHS,
where I work for some of my time, abuse can sometimes be seen, that normally we ’see no evil,
hear no evil, speak no evil’, but just sometimes
there is a case of elder abuse. Certainly, the research we have done has shown that actually
it’s much more of a spectrum. That abusive behaviour is behaviour, and all behaviour
tends to exist on a spectrum, whether it’s a good or bad. Many people will react
in an abusive way sometimes but very, very severe abuse
is less common. The research that we’ve done
on how common abuse is, that is a difficult question, as you
have to ask yourself what is abuse. We know what abusive behaviour is, but where do you put your cut point,
what you decide is an abuse case. It seems that, certainly
in the older general population, about 5% of people report that they have
experienced some abusive behaviour. As you move up into
more vulnerable populations that increases, until and when people
have asked nursing home staff whether or not
they observed others abusing, 80% say they have. This is my third point, that the prevalence of abuse
tends to mirror where people
with more severe dementia are. This is what we found when we asked family carers of people with dementia about a range of different types
of abusive behaviour that were likely
to be happening more commonly. As you can see, many carers talked about how
they sometimes in the last few months screamed or yelled,
at the person they were looking after, or used a harsh tone
of voice, or insulted, or swore. Overall a third of family carers
of people with dementia had reported some abusive behaviour
at least sometimes, and certainly,
when the study came out in 2009, it was quite widely reported and in
the media they used the higher figure which was that 50% of family carers
had reported any abuse happening. Certainly, the way that was received
by patients’ groups was very positive. We need to acknowledge that this happens and we need to acknowledge
that it’s common, and people need to be able to
talk about these things because if you
don’t talk about it if you don’t ask, then people don’t feel able to tell you
and they don’t feel able to get help. My fifth fact that I think
is interesting about abuse is that people don’t tend
to agree on what it is, and over the last 10 years
we’ve developed a vignette about a woman who’s got dementia
and who is cared for by her son, and we’ve been asking people in lots
of different countries and groups, which ways that Tom,
her son, can look after her might be seen as abusive. Here are just some of the results
from the study we did in the UK and one we did in Romania. If you just look at the third line down,
just as an example, we said is it ok if Tom
were to lock her in the house all day, while he goes out to work. As you can see, at best 63% of UK professio nals
thought that that was abusive, and 23% of carers in Romania
thought it was abusive, so really there isn’t much
agreement on what abuse is. By any definition, depriving somebody of the ability
to leave a building and therefore really putting them
at risk if there was a fire for example and possibly putting them in a situation
that might be quite frightening, it’s quite surprising that a third of UK
professionals don’t view that as abuse, and I think it shows that it’s something
that we need to be talking about more. One thing when
we’re managing situations of abuse in the NHS and clinically is that it can be a balance. You’ve detected the abuse and you
think about how to manage a situation. Of course, everybody has
a right to live without abuse, but everybody also has a right, if they have capacity to decide
how they want to live their life. Sometimes things aren’t as simple as
rescuing people from abusive situations, a lot of people
don’t want to be rescued, they want to stay in that situation
and like things to be different. There was a case
I was aware of a few years ago of a couple where there’d been
lifelong domestic violence, and this lady,
who had developed dementia, had decided over a very long period
of time to stay in this relationship and there was a lot of de
bate and disagreement amongst the team because she now had dementia and wasn’t
able to make that decision for herself. Many people felt that she should not
be put in an abusive situation that she couldn’t agree to, but there was also a feeling this was
something that she had wanted for years, and being taken away from her husband
would be a real loss. It can be difficult to manage
those situations. That’s my sixth comment on abuse, is that people with mental capacity
to do so may refuse help to stop abuse. I think a sensible approach to that, is to be clear that if people
refuse that help then that may be something that
they have capacity to do at that time. That doesn’t mean you might not
be able to mitigate the risks and that doesn’t mean that you wouldn’t
try and stay involved in some way or try to help that person in any way
that they find acceptable. So how is abuse managed? In reality the great majority
of these situations we’ve talked about with carers screaming and shouting, would never be defined
as an abuse case and even more severe abuse
is mainly not detected or reported. The most severe cases in this country would be reported
to safeguarding services, and then they would have
an investigation, and in some cases
would decide on no action, or they may give increased care, they may decide that
somebody can no longer live at home, or in very severe cases
it may be reported to the police. Why is most elder abuse
never detected? Inherently this is often something victims of abuse
don’t want to talk about, and often that
carers feel they cannot talk about. Probably paid staff in care homes are least likely to report abuse that might obviously lead to them losing
their job and their income. My seventh thought is that most abuse
is undetected and unreported. One thing we have shown, the reference
is at the bottom of the page, is we did a study
with some junior doctors, who were coming into work in
psychiatry as part of their induction, they were given a talk
about elder abuse, and they were told about what it
was and how to detect it and what to do, and what we found is that on paper, their knowledge of what abuse was,
and their ability to detect it, increased greatly, and when we stayed in touch with them
three months later they were more likely to report
having identified a case of abuse than those that had the control,
that hadn’t had this training. It makes sense that if you tell people
about abuse and how to report it, they will be more likely to. How do we find out about
abuse in care homes? We’re just coming to the end now
of a study in which we have been asking care
workers in 91 care home units in the UK, to anonymously report abuse. As I said in situations where people
are paid to work as carers they’re unlikely to report it
if not allowed to do it anonymously. There are some ethical issues with that, with going into care homes, and asking the care workers whether
or not they’ve behaved abusively but not being able
to directly address that abuse when you find out about it. We have agreed with the ethics committee
that we will tell the home there is some abuse going on in that
home if more severe abuse is reported, so that they know that this
has come forward, although they won’t know
the specifics of who reported it. We’re about to report
on those results soon. That’s the MARQUE study, there’s lots
from the MARQUE team here today, and the results
will be coming through soon, but certainly, what it has shown
is that neglect and abuse, particularly neglect is certainly
not uncommon in care homes. Coming back to this original slide about what are the situations
in which abuse tends to happen, I wanted to end by thinking about how
we might reduce and prevent abuse. There was a good review
recently by Ayalon et al, by a group, who looked at all the studies that have
tried to reduce elder abuse, and one of the interesting things
that comes out of that is that the best evidence really, is for reducing the use of
physical restraints in care homes. You remember that slide where somebody
had a seatbelt on in a wheelchair, or sometimes when people are restrained
to beds, and there are countries in which
that is legal in some circumstances, in the Netherlands
and Germany for example. In the UK, we have a tradition
in which that is not, or we have a legal situation, in which that is not permitted
under any circumstances. But how you manage severely agitated
and aggressive behaviour in dementia is something that’s responded
to differently in different countries. Where those restraints are allowed
under some circumstances there’s something that can be measured and they’ve been able to look
at what reduces them. When you educate staff to do something
called person-centred care, where care isn’t given
on an institutional level, where everybody’s going to have lunch at
twelve o’clock because that’s lunchtime, but you really think about what that
person needs, what they want to do, and start with the person that
you’re caring for and try to design the
care around them. When you do that and you think about
that person and their life history and you centre your care around them, then abuse tends to happen less. That may give us some clues as to what might reduce
other forms of abuse, which are harder to detect. It makes sense
that if you see someone as a human and you treat them with
respect and dignity and you have the
resources to do that, but that’s not an environment
in which abuse would flourish. So generally, when thinking
about reducing and preventing abuse we’re thinking about creating an
atmosphere of openness in which people, not just window cleaners, but everybody can see in
and see what’s happening. We’re thinking about protecting victims
and supporting them, and where the abuse might be a reaction,
for example, to very agitated behaviour, is there anything
we can do to reduce that. Also, I talked about
a power imbalance, but how much can we empower victims
to talk about when abuse is happening, and help in the fight to not
make this something that is accepted. The legal situation, having rights, there is now a law specifically
against elder abuse, and in the perpetrators where this
is a result of stress in caring, how can we reduce
the stress of carers, and how can we increase the skills. A common thing we find in care homes is people that say,
“We had to force him.” “We have to force him to have a bath because the alternative
is not to be clean.” In the same way if we have to put
a seatbelt on because the only alternative
is this person falls on the floor. It’s about educating people and thinking
about how to make alternatives to that. How might it be that somebody
could be kept clean and managed with dignity to have a bath
rather than being forced. That’s about increasing skills
and increasing support as well. Where there is strong management, abuse in care homes
and neglect are less likely. We’ve just finished
the START family carer trial which showed good ways to help to reduce anxiety and depression
in family carers, by giving them skills and looking at the ways they coped
with caring for someone with dementia. What we did find was that intervention
didn’t actually reduce abuse, and what happened was that abuse
went down in the intervention group, it also went down in the control group and I think that said something
about how we, the difficulties of researching abuse, because when the researchers told us
that they had found examples of abuse in either the control
or the intervention group, we had a moral duty
to do something about that. It can be difficult
sometimes in a clinical situation to research a treatment for abuse because inherently by asking about abuse
you’re intervening in the control group. Here is my summary of my 10 points, which I think are interesting
about elder abuse. There’s nothing specifically
different to other sorts of abuse. It’s a behaviour. Where severe dementia is
common in society, abuse tends to be
more common as well. A third of family
carers report abuse, not that people can
always agree on what abuse is. We can try to reduce and stop abuse
but if people have capacity they might refuse that help. Most abuse is undetected
and unreported, but we know by teaching professionals
about it and how to report it we can help that. We probably need
some anonymous reporting to reduce abuse in settings where
professional carers are abusing, because in care homes abuse and neglect
are not uncommon, and the best evidence we have
at the moment is for staff education and person-centred care,
for reducing abuse. Thank you. Thank you as well to everybody
from the Division of Psychiatry, particularly people who have come today and Gill Livingston who has done
this research with me, and to our research funders.
Thank you. Thank you, Dr Cooper. We have time for some questions
because you kept that to time nicely. We have microphones around the room
if people want to use them, do we have any questions here? Can I ask a question? Can I ask about the partners
that you work with? You mentioned some charities
that you have worked with. How has this work been received in terms of what might be done
by other groups, in other words, what kinds
of pressure can they put on people, what sorts of things
have people learned? How is it making a difference? It is clearly full of very interesting
and important conclusions? There is even a charity
‘Action on Elder Abuse’, specifically for this issue. Certainly, the Alzheimer’s society
has been very interested. I have to say when we were issuing
a press release and it was taken up, saying half of family carers
have recorded acting abusively. I can’t admit to not being
slightly trepidatious, but the Alzheimer’s society were
supportive, as were the family carers, and it was a while ago now, but I was on GMTV, and we had a discussion and a phone in,
and everybody wanted to talk about this. I think that, you know, if you are caring for somebody
with dementia and you are one of the third of people
who admits to behaving abusively, I think it must be really awful
to feel that you are completely alone, and to not only manage
the stress of caring but also feel that
you’ve got nowhere to turn for help, you’re stressed and don’t know
what to do and feel guilty, actually finding out this is happening
to other people and get help you need must be a great relief, so yes, we’ve been generally very
supported by the Alzheimer’s society in this work we have been doing. Thank you. We have a number of questions here,
so firstly there and then second here. I just want to know, have you done any research
on dementia in developing countries? I did actually, we went to India and we did a seminar on elder abuse and we had a very interesting discussion and certainly, elder abuse research, there’s not been very much
in developing countries. It was a very powerful discussion, and one of the things that happened
at the beginning of the seminar was that everybody stood up
and threatened to walk out, and said we don’t have
any elder abuse in India, this is disgraceful, and somehow
we got everybody sitting down again and we had quite a good discussion. I think that the legal and the social
situation which are operating obviously affects
how things are managed, but certainly,
every country is struggling with this. It can be difficult in situations
where there isn’t a welfare state, and supporting families really
are managing on their own. I was very interested as I said, the abuse that we see in this country
is often in care homes, but in many countries
there are no care homes, so people with severe dementia
are managed at home. We did a cross-national study and found high rates of abuse in
the Southern European countries compared to
the Northern European countries. When we reflected on that, human behaviour is human behaviour, it’s unlikely to be inherently different
in different countries, it’s about where you look after
the most vulnerable people in society. In Italy, where most people
with severe dementia were looked after in their own homes, the rates of abuse
in the community were higher whereas in our country, most people with severe dementia
are in care homes, so we see the higher rates there. Thank you.
Then a question here. Thank you. Thank you very much
for your presentation. I would like to know more about
interventions at a population level. I study a MSc in population health
so maybe that’s why, because I’m interested in knowing
what can we do in terms of social policy to address the causes of these, and there’s also a gender issue
around this because the health system
doesn’t collaborate or doesn’t support who are family carers
that are often women, and as in the same way
didn’t recognise historically the role of domestic work
as a paid role, the same is happening with caring
for people with disabilities, in this case dementia. What do you think that can be done to
effectively tackle the causes of abuse? It’s an interesting question. I suppose fundamentally when you think
about care homes for example which are a big part of the situation
of where elder abuse is happening, you have to think about how can
we generate an environment here and in the community
where abuse is less likely to happen. I think what we’ve seen is that
where there is strong management, and where there are adequate resources, and where people have time and skills, abuse is less likely to happen. I do think that,
without wishing to labour the point, there’s something very powerful
about seeing people as people, about not just seeing the dementia. I think that most, although there are a very small minority
of sadistic people in this world, most people if they see
the humanity in somebody they’re less likely to behave
in that way and I think a lot of abuse happens
because people don’t see the humanity, or perhaps because they just don’t know
how else to respond, as I said, very often
what you come up against is that people don’t see
that they’ve got other choices. Sometimes care workers
who are on the frontline don’t know where to turn
if they don’t have strong management or they don’t have lines
of responsibility, and similarly, family carers might feel
isolated and not know where to turn. So support, family carers, support and management
for care workers and openness. I was in a care home before Christmas
and I looked out the window and there were about 50 school children
trooping in with Christmas presents, things like that, things that bring
the community into care homes, things that make them part of life. I know they’ve been experimenting in
other countries with coffee shops, with nurseries and older people’s
homes together. Anything that brings people together
and prevents silos and dark places where things can happen and not
be noticed is good in my view. Thank you, just time
for a quick question here. Thanks, Claudia,
that was interesting. To what extent… there’s something at play here
about professionalisation and where there’s people with dementia
including severe dementia who are within health services,
or in transit to, even though they live
in the social sector in care homes and so the NHS is obviously
highly professionalised and qualified and then you’ve got what’s thought of
as the un-professionalised sector, and where that plays in this? Ann is project manager on MARQUE, I mean MARQUE cold be part
of the answer, couldn’t it. We hope so. I mean we hope that through the
MARQUE intervention which is going into, we’re in five care homes
at the moment, aren’t we, four,
going in regularly, meeting in groups, so our researchers are going in and they are going through a manual and talking to care workers
about what dementia is and about how to manage distressed
behaviour that might happen in dementia, and also about positive things. I’ve been having lots of meetings this
week about activities in care homes. If you go into a care home and everyone
is at a table with nothing to do, that doesn’t feel like an atmosphere
where good things are going to happen. People need activities
and they need pleasure in life and they need pleasant events. Lack of abuse can’t happen
in a vacuum, you have to have good things
and happiness and things that we value in life
and positivity. Then I think abuse is less likely. Hopefully MARQUE will help that,
fingers crossed. Thank you.
I think we’re running out of time, so, thank you for your questions, and can you join me
in thanking Dr Cooper again.

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