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Diablog Number 5: On antipsychotic use in dementia

Posted in DiaBlog with Larry

On antipsychotic use in dementia
Elizabeth Peel in conversation with Larry Gardiner

In the fifth of a series of six blog posts I talk with Larry Gardiner. Larry describes himself as a Change Agent, Co-producer, Citizen Advocate, Gentle Irritant. I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, and meaningful interaction; and the “bigger picture” and how people with dementia are represented and treated in society.

This particular ‘diablog’ focuses on Larry’s thoughts about antipsychotic medication use with people with a dementia. The use of antipsychotic drugs in controlling the behavioural and psychological symptoms of dementias have come under increased scrutiny in recent years from medical, legal and psychological perspectives. And reducing antipsychotic use, especially in care homes, has been a key focus.

Larry re-emphasises the importance of looking for the causes of behaviours that challenge others rather than turning to antipsychotic drugs ‘to shut people down’. He also stresses the importance of better resourcing for non-pharmacological approaches in dementia care.

Liz: What, do you think, are the pressing issues to be tackled in dementia?

Larry: I would like to see research effort devoted to non-pharmacological interventions that work, and alternatives to pharmacological interventions that do work but have adverse or unwanted effects. So I would like to see the level of prescribing for therapies like risperidone, sodium valproate, lithium these are all used routinely and inappropriately for unlicensed applications and they are used for mood control, they’re used for behaviour modification, they’re used to shut people down that get a bit arsy and a bit agitated and a bit anxious and they’re usually have quite dire side effects.

So, what’s the ones they use for psych- it’s an antipsychotic, you know, it’s on the tip of my tongue what it’s called, anyway, what it does is, you have to titrate the dose quite carefully cause if you over prescribe it at the wrong dose and the wrong frequency and it has to be titrated per individual what happens is they go numb. You acquire a numbness and partial paralysis if it’s over use. So it’s an antipsychotic which does work, in a sort of liquid compound, it screws the lid down on the symptomology but without addressing what’s causing the symptoms. It has a rebound effect, as soon as you stop prescribing it, if you stop prescribing it to suddenly then you’ll get a flip over, backlash, kind of. Oh, I’m trying to think what it’s called, oh gosh, I’ve got a friend who’s on it. She hates it. She hates it but she’s so nervous about coming off it. Because the last time she came off it, she got Sectioned and got banged away. So I’d like research effort about that and I’d like to have research effort about the prevalence of deprivation of liberty and sectioning for inappropriate symptomology.

So, somebody’s brain cells who’ve been killed or are dying, right, doesn’t have a mental health problem, they have a physiological disorder which presents with symptoms that look similar to a mental health condition. So prescribing for, and treating and responding to an individual because their presentation is similar to a mental health condition is inappropriate, they don’t have a mental health condition, they have a brain that’s dying. And, they don’t deserved to be banged up or deprived of their liberty or taken away from home because of agitation or anxiety. What they need, so things like delirium and things like acting out, what people call challenging behaviour nearly always have a cause. So what we really have to do is do some research about the things that are most likely to cause it, and take those causes away. And then somebody can be maintained safely at home, in their comfortable surroundings, their familiar surroundings, with familiar people around them with a steady kind of regime.

The worst thing to do with somebody with dementia is to put them in a strange setting where they don’t know anybody. So, what, so how do we respond to somebody who gets a bit agitated? Take them out of the home, deprive them of their liberty or take them under Section 8 and then what do they do? Their behaviour gets worse so then we put them on antipsychotics and then what happens is the side effects mask what’s happening to the symptoms, and then what happens? Everything gets worse, and then what happens? They die prematurely.

Liz: We’ve talked a little bit about what you think about the role of antipsychotic medication in dementia. Is there anything else you would like to say about that?

Larry: They use them because we won’t invest, it’s because they are cheap.  They won’t invest the resources that could get better results, most of the resources that would get better results would involve paying people salaries. It’s a lot easier, if a pill cost 12p and somebody’s hourly rate is 12 pounds, you’re gonna get a pill that’s worth 12p. That’s why we do it. You can’t justify it. Most of the applications for which antipsychotics are used in the field of dementia are unlicensed applications. Psychiatrists who prescribe them are struggling really, to find something else that would be better.

The starting position for everybody who enters the caring profession, usually, the majority, the overwhelming majority, enter the profession out of a genuine interest and a genuine desire to be useful and helpful and, I think, professionals get pushed into roles for which they’ve not been trained and they are unsuited. They get pushed into being purse holders, gatekeepers, commissioners of services and prescribers of really quite noxious things. What they entered the profession to do was probably motivated by compassion and what they really wanted to do was make sure bad things don’t happen and try and make some good things happen. They never get the chance. Largely because, well there’s a political part on this, it occurs to me that we live in a country where we consistently vote for Governments that promise that they won’t take away a lot of our money in tax. I lived in Sweden where the rate of tax for people with quite modest incomes starts on 40 per cent and very rapidly goes up to 60 per cent. But the level of services for mothers and families, for children in school and for older people, and for people with dementia are fully funded, generously resourced, full of innovation, full of resourcefulness, full of creativity and invention. I’d like to see that here.

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