Rosanna, I found this article on the NHS Choices website. The main advantages of that site is that a) it's aimed at the general public and b) it doesn't have any financial incentives. If you're interested in reading it, do please read the whole thing - don't stop halfway. And bear in mind that it's only one study, it's not the last word.
If you don't think it would help, then my personal summary of its advice would be: keep a complete diary of your mother's mood and behaviour; expect your GP to keep her medication under continuous review; and don't be afraid to ask directly for a justification of this prescription.
*** article starts ***
Antipsychotics 'still given to too many with dementia'
Behind the Headlines Friday October 19 2012
“‘Chemical cosh’ drugs given to 50pc more dementia patients than thought,” The Daily Telegraph reports, while the Daily Express runs with a rather more tasteless headline “Shocking rise in dementia patients on ‘zombie’ drugs”. The news items are prompted by a study into the use of a class of medication known as antipsychotics in people with dementia. Antipsychotics are a type of drug most often used to treat symptoms of psychosis, such as disturbed thoughts, delusions and hallucinations. They can also be used in the short-term to treat agitation, aggression and other behavioural problems that can be seen in other conditions such as dementia, particularly if these symptoms are judged to place the patient or others at risk of harm. In recent years concerns have been raised that antipsychotics are being overprescribed for people with dementia. This is worrying because, as well as causing many unpleasant side effects (such as drowsiness), the long-term use of antipsychotics increases the risk of fatal conditions such as stroke. In the study, pharmacists looked at the number of people with dementia in a single primary care trust and then assessed how many were being treated with antipsychotics. They found that 15% of 1,051 people living with dementia in the community received a prescription for these drugs in the course of 2011. The 15% figure is far higher than estimates made by the Department of Health about how often the drugs are required (6.8%). This suggests, but does not prove, that overprescription of antipsychotics is still a problem. Where did the story come from?
The study was carried out by researchers from the Pharmacy Department of Aston University, Birmingham. No sources of funding are reported, though the three authors report that they have provided consultancy services to pharmaceutical companies marketing psychotropic drugs (drugs that affect patterns of thinking). Since the study argues that fewer psychotropic drugs ought to be prescribed, it seems unlikely that there is a conflict of interest. The study was published in the open access peer-reviewed medical journal BMC Psychiatry. This is well conducted research, but the newspaper coverage is not always accurate. The Express makes many claims that are not substantiated by this piece of research, for example, that people are being “forced” to take antipsychotics. This study did not assess whether use of antipsychotics is on the rise and did not analyse their potentially lethal effects. However, previous reports on antipsychotic use in people with dementia have raised these concerns. For example, see the Behind the Headlines analysis 'Antipsychotic use in dementia' from November 2009. What kind of research was this?
The researchers introduce the global problem of dementia, and say that 700,000 people in the UK are currently living with the condition. This figure is estimated to double over the next three decades because of the ageing population. Many past studies have demonstrated that, in addition to the problems with cognitive function, many people with dementia also suffer from behavioural and psychological symptoms, such as anger, agitation and emotional outbursts. These symptoms are reported to be a significant source of distress for caregivers. These types of symptoms have often been treated with antipsychotic drugs. While antipsychotics can be effective they also carry the risk of causing premature death due to complications such as stroke. In 2009, the Department of Health reported that antipsychotics were implicated in approximately 1,800 deaths a year in England. The current cross sectional research looked at how frequently antipsychotics are being prescribed in dementia. The researchers’ aim was to assess whether warnings about overprescription were being taken into consideration. The researchers first identified people with dementia who were being prescribed antipsychotics within one primary care trust (Medway PCT, which is in Kent and has a fairly representative catchment area consisting of a mix of villages and towns). Reviewers then looked at certain characteristics associated with the use of antipsychotics, such as whether the person was living in a residential or a care home. This research provides prevalence figures for use of antipsychotics among people with dementia residing within a particular healthcare region. But it cannot tell us whether these drugs were prescribed appropriately or not, or whether there were associated detrimental effects upon health. What did the research involve?
The research was conducted by pharmacists, and included GP surgeries in Medway Primary Care Trust, Kent, which covers a population of 256,700 people, of whom 51,500 are over the age of 60. It is also said to be a relatively deprived area. Between January and December 2011 a pharmacist used the dementia registers (set up in Medway PCT in 2006/07) to identify confirmed cases of dementia across 59 of the 60 GP surgeries within the PCT (one practice declined to participate). The individual patient record for each person on the register was then examined to identify people with dementia currently prescribed a low-dose antipsychotic, either as a one-off, an acute prescription or on repeat prescription. The research focused on low doses of the six most commonly prescribed antipsychotics (olanzapine, risperidone, quetiapine, amisulpride, sulpiride and haloperidol). The researchers collected information on whether the person was living at home, within a care home or residential home. They also looked at where treatment had been commenced, for example by a GP, in hospital, by other acute care teams or by a learning disability team. They restricted their review only to treatments that had been commenced in the community and not in hospital. As a follow-on to the research, the pharmacy teams were said to have collaborated with GPs in identifying where withdrawal of medication was potentially suitable, with decisions to alter or withdraw medication ultimately made by the GP based on the individual patient’s needs. Generally, withdrawal was considered if: the patient was not receiving any follow-up by secondary care services the patient was receiving an antipsychotic for non-acute behavioural problems (best practice for people with dementia is that antipsychotics should only be used on a short-term basis when a person has a severe ‘flare-up’ of behavioural problems) prescription of the antipsychotic had not been reviewed in the past 12 months What were the basic results?
Within the 59 GP surgeries in Medway PCT 1,051 people were on the dementia register, of whom 462 were in residential care and 589 were living at home. In total, 161 of these people (15%) were receiving low-dose antipsychotics, almost three-quarters of whom (118) were in residential care and the remainder were living at home. Each GP surgery was treating an average of three people with dementia with low-dose antipsychotics. In 44% (26) of the surgeries no one with dementia was receiving antipsychotics. Five of the practices accounted for more than 50% of prescribing, although three of these practices were particularly large. Of the 161 people with dementia receiving low-dose antipsychotics, just over half (87) were receiving follow-up with secondary care mental health teams and four people were receiving follow-up from the learning disability team. The remaining 70 were reviewed by pharmacists to consider the suitability of their treatment, and the resulting pharmacy collaboration with GPs led to dose reduction or withdrawal of antipsychotics in 43 people (61% of the cases reviewed, 27% of all those receiving low-dose antipsychotics). How did the researchers interpret the results?
The researchers conclude that 15% of people with dementia in the Medway PCT region were being treated with a low-dose antipsychotic, and most of the people receiving them were in residential care. Their pharmacy-led review successfully resulted in reducing the prescribing of antipsychotics to people with dementia for whom this was no longer appropriate. This suggests that similar reviews taken by other PCTs may be useful, they say, adding, “a pharmacist-led review could successfully limit the prescribing of antipsychotics to people with dementia”. Conclusion
This research gives a valuable insight into the prescription of low-dose antipsychotics in the community to people with dementia. The research finds that, in Medway PCT, 15% of people with dementia were prescribed an antipsychotic in 2011, most of whom were in residential care, and 54% of whom were still receiving follow-up care with secondary care mental health teams. The fact that many were still receiving follow-up care means that the prescription of antipsychotics would be reviewed. But the fact that the remaining 46% were not receiving follow-up care, but were still being prescribed antipsychotics, is a cause for concern. In total, it was considered appropriate to reduce the dose or withdraw the drug from 27% of people with dementia receiving low-dose antipsychotics. Important considerations include that: The study only covers a single healthcare region within the UK, and does not tell us about other regions. The authors report that different studies have produced differing estimates of antipsychotic use in people with dementia. The study only covers a single year period; therefore this study alone cannot tell us that there has been a “shocking rise” in antipsychotic prescriptions. The study cannot tell us whether the initial prescriptions were given appropriately, as it has not examined medical reasons for the particular prescriptions. The study did not assess the health effects of antipsychotics in the patients; therefore we cannot assume anything about possible detrimental health effects of these prescriptions, and media claims of them being “potentially lethal” are not supported by this study. The study also did not suggest or assess whether dementia sufferers are being “forced to take the drugs” as claimed in the media. The study has only looked at prescriptions started within the community, not within secondary care, so no assumptions can be made about prescriptions in hospital. Despite the limited conclusions that can be drawn from this study alone, a 2009 report produced for the government concluded that antipsychotics appear to be used too frequently in people with dementia, with the potential benefits likely to be outweighed by the risks. It estimated that, each year, about 1,800 additional deaths will be caused by the treatment in this frail population. This highlights the importance of monitoring the use of antipsychotics in people with dementia. What the current study research suggests is that it may be beneficial for both PCTs and GPs to review whether the prescription is still warranted when issuing repeat prescriptions for antipsychotics.
Communication skills among the medical profession are a particular bugbear of mine, too. I do sympathise. Getting them to comprehend your question is often the hardest part anyway, and then on top of that they often fail to find a happy mean between being so simplistic it's insulting or so technical that you need a post graduate degree to understand what they're saying.
The trouble with asking around for lay experiences is that - well, it too is problematic on many levels. Their loved ones won't be identical to yours. Their understanding of what's going on in their own situation may not be good enough to clarify anything. Group think is right more often than you'd suppose - there are lots of sociological studies proving it - but mainly in terms of general ethics or policy direction; it rarely helps in very specific situations. And what's absolutely certain is that none of the people who answer will know what symptoms your mother is experiencing, what their probable causes are, and what benefits her medical team are hoping to achieve to offset the disadvantages and risks *to her specifically* of using this medication.
Would you like to say a little more about how she is doing and what you're hoping to learn? Again, I do completely sympathise with the frustration and worry this must be causing you.
Are you saying that it is not covering your mom's extreme anxiety? You need to ask for a change in medication. Have you had that discussion with her doctor?
I would just like an opinion of people who are already using this medication for the purpose i mentioned. I have asked many many questions on all the medications doctors have perscribed and have been frustrated that the answers to my questions do not equal the results. So now i would like to ask the public who actually care for the people who live with this dreaded disease their opinion.
If you don't think it would help, then my personal summary of its advice would be: keep a complete diary of your mother's mood and behaviour; expect your GP to keep her medication under continuous review; and don't be afraid to ask directly for a justification of this prescription.
*** article starts ***
Antipsychotics 'still given to too many with dementia'
Behind the Headlines
Friday October 19 2012
“‘Chemical cosh’ drugs given to 50pc more dementia patients than thought,” The Daily Telegraph reports, while the Daily Express runs with a rather more tasteless headline “Shocking rise in dementia patients on ‘zombie’ drugs”.
The news items are prompted by a study into the use of a class of medication known as antipsychotics in people with dementia.
Antipsychotics are a type of drug most often used to treat symptoms of psychosis, such as disturbed thoughts, delusions and hallucinations. They can also be used in the short-term to treat agitation, aggression and other behavioural problems that can be seen in other conditions such as dementia, particularly if these symptoms are judged to place the patient or others at risk of harm.
In recent years concerns have been raised that antipsychotics are being overprescribed for people with dementia. This is worrying because, as well as causing many unpleasant side effects (such as drowsiness), the long-term use of antipsychotics increases the risk of fatal conditions such as stroke.
In the study, pharmacists looked at the number of people with dementia in a single primary care trust and then assessed how many were being treated with antipsychotics.
They found that 15% of 1,051 people living with dementia in the community received a prescription for these drugs in the course of 2011.
The 15% figure is far higher than estimates made by the Department of Health about how often the drugs are required (6.8%). This suggests, but does not prove, that overprescription of antipsychotics is still a problem.
Where did the story come from?
The study was carried out by researchers from the Pharmacy Department of Aston University, Birmingham.
No sources of funding are reported, though the three authors report that they have provided consultancy services to pharmaceutical companies marketing psychotropic drugs (drugs that affect patterns of thinking). Since the study argues that fewer psychotropic drugs ought to be prescribed, it seems unlikely that there is a conflict of interest.
The study was published in the open access peer-reviewed medical journal BMC Psychiatry.
This is well conducted research, but the newspaper coverage is not always accurate. The Express makes many claims that are not substantiated by this piece of research, for example, that people are being “forced” to take antipsychotics.
This study did not assess whether use of antipsychotics is on the rise and did not analyse their potentially lethal effects. However, previous reports on antipsychotic use in people with dementia have raised these concerns. For example, see the Behind the Headlines analysis 'Antipsychotic use in dementia' from November 2009.
What kind of research was this?
The researchers introduce the global problem of dementia, and say that 700,000 people in the UK are currently living with the condition. This figure is estimated to double over the next three decades because of the ageing population.
Many past studies have demonstrated that, in addition to the problems with cognitive function, many people with dementia also suffer from behavioural and psychological symptoms, such as anger, agitation and emotional outbursts. These symptoms are reported to be a significant source of distress for caregivers.
These types of symptoms have often been treated with antipsychotic drugs. While antipsychotics can be effective they also carry the risk of causing premature death due to complications such as stroke.
In 2009, the Department of Health reported that antipsychotics were implicated in approximately 1,800 deaths a year in England.
The current cross sectional research looked at how frequently antipsychotics are being prescribed in dementia. The researchers’ aim was to assess whether warnings about overprescription were being taken into consideration.
The researchers first identified people with dementia who were being prescribed antipsychotics within one primary care trust (Medway PCT, which is in Kent and has a fairly representative catchment area consisting of a mix of villages and towns).
Reviewers then looked at certain characteristics associated with the use of antipsychotics, such as whether the person was living in a residential or a care home.
This research provides prevalence figures for use of antipsychotics among people with dementia residing within a particular healthcare region. But it cannot tell us whether these drugs were prescribed appropriately or not, or whether there were associated detrimental effects upon health.
What did the research involve?
The research was conducted by pharmacists, and included GP surgeries in Medway Primary Care Trust, Kent, which covers a population of 256,700 people, of whom 51,500 are over the age of 60. It is also said to be a relatively deprived area. Between January and December 2011 a pharmacist used the dementia registers (set up in Medway PCT in 2006/07) to identify confirmed cases of dementia across 59 of the 60 GP surgeries within the PCT (one practice declined to participate).
The individual patient record for each person on the register was then examined to identify people with dementia currently prescribed a low-dose antipsychotic, either as a one-off, an acute prescription or on repeat prescription.
The research focused on low doses of the six most commonly prescribed antipsychotics (olanzapine, risperidone, quetiapine, amisulpride, sulpiride and haloperidol). The researchers collected information on whether the person was living at home, within a care home or residential home.
They also looked at where treatment had been commenced, for example by a GP, in hospital, by other acute care teams or by a learning disability team.
They restricted their review only to treatments that had been commenced in the community and not in hospital.
As a follow-on to the research, the pharmacy teams were said to have collaborated with GPs in identifying where withdrawal of medication was potentially suitable, with decisions to alter or withdraw medication ultimately made by the GP based on the individual patient’s needs.
Generally, withdrawal was considered if:
the patient was not receiving any follow-up by secondary care services
the patient was receiving an antipsychotic for non-acute behavioural problems (best practice for people with dementia is that antipsychotics should only be used on a short-term basis when a person has a severe ‘flare-up’ of behavioural problems)
prescription of the antipsychotic had not been reviewed in the past 12 months
What were the basic results?
Within the 59 GP surgeries in Medway PCT 1,051 people were on the dementia register, of whom 462 were in residential care and 589 were living at home. In total, 161 of these people (15%) were receiving low-dose antipsychotics, almost three-quarters of whom (118) were in residential care and the remainder were living at home.
Each GP surgery was treating an average of three people with dementia with low-dose antipsychotics. In 44% (26) of the surgeries no one with dementia was receiving antipsychotics.
Five of the practices accounted for more than 50% of prescribing, although three of these practices were particularly large.
Of the 161 people with dementia receiving low-dose antipsychotics, just over half (87) were receiving follow-up with secondary care mental health teams and four people were receiving follow-up from the learning disability team. The remaining 70 were reviewed by pharmacists to consider the suitability of their treatment, and the resulting pharmacy collaboration with GPs led to dose reduction or withdrawal of antipsychotics in 43 people (61% of the cases reviewed, 27% of all those receiving low-dose antipsychotics).
How did the researchers interpret the results?
The researchers conclude that 15% of people with dementia in the Medway PCT region were being treated with a low-dose antipsychotic, and most of the people receiving them were in residential care.
Their pharmacy-led review successfully resulted in reducing the prescribing of antipsychotics to people with dementia for whom this was no longer appropriate.
This suggests that similar reviews taken by other PCTs may be useful, they say, adding, “a pharmacist-led review could successfully limit the prescribing of antipsychotics to people with dementia”.
Conclusion
This research gives a valuable insight into the prescription of low-dose antipsychotics in the community to people with dementia. The research finds that, in Medway PCT, 15% of people with dementia were prescribed an antipsychotic in 2011, most of whom were in residential care, and 54% of whom were still receiving follow-up care with secondary care mental health teams. The fact that many were still receiving follow-up care means that the prescription of antipsychotics would be reviewed. But the fact that the remaining 46% were not receiving follow-up care, but were still being prescribed antipsychotics, is a cause for concern.
In total, it was considered appropriate to reduce the dose or withdraw the drug from 27% of people with dementia receiving low-dose antipsychotics.
Important considerations include that:
The study only covers a single healthcare region within the UK, and does not tell us about other regions. The authors report that different studies have produced differing estimates of antipsychotic use in people with dementia.
The study only covers a single year period; therefore this study alone cannot tell us that there has been a “shocking rise” in antipsychotic prescriptions.
The study cannot tell us whether the initial prescriptions were given appropriately, as it has not examined medical reasons for the particular prescriptions.
The study did not assess the health effects of antipsychotics in the patients; therefore we cannot assume anything about possible detrimental health effects of these prescriptions, and media claims of them being “potentially lethal” are not supported by this study.
The study also did not suggest or assess whether dementia sufferers are being “forced to take the drugs” as claimed in the media.
The study has only looked at prescriptions started within the community, not within secondary care, so no assumptions can be made about prescriptions in hospital.
Despite the limited conclusions that can be drawn from this study alone, a 2009 report produced for the government concluded that antipsychotics appear to be used too frequently in people with dementia, with the potential benefits likely to be outweighed by the risks.
It estimated that, each year, about 1,800 additional deaths will be caused by the treatment in this frail population. This highlights the importance of monitoring the use of antipsychotics in people with dementia.
What the current study research suggests is that it may be beneficial for both PCTs and GPs to review whether the prescription is still warranted when issuing repeat prescriptions for antipsychotics.
Communication skills among the medical profession are a particular bugbear of mine, too. I do sympathise. Getting them to comprehend your question is often the hardest part anyway, and then on top of that they often fail to find a happy mean between being so simplistic it's insulting or so technical that you need a post graduate degree to understand what they're saying.
The trouble with asking around for lay experiences is that - well, it too is problematic on many levels. Their loved ones won't be identical to yours. Their understanding of what's going on in their own situation may not be good enough to clarify anything. Group think is right more often than you'd suppose - there are lots of sociological studies proving it - but mainly in terms of general ethics or policy direction; it rarely helps in very specific situations. And what's absolutely certain is that none of the people who answer will know what symptoms your mother is experiencing, what their probable causes are, and what benefits her medical team are hoping to achieve to offset the disadvantages and risks *to her specifically* of using this medication.
Would you like to say a little more about how she is doing and what you're hoping to learn? Again, I do completely sympathise with the frustration and worry this must be causing you.