To think they should not have given my Dad antipsychotics?

[pointythings]

My father has Parkinsons. He lives in Holland, and has had very good care so far. Recently he was admitted for assessment, as his condition was deteriorating and he was having many falls. He also has the form of dementia associated with Parkinsons disease.

While in the hospital, he was prescribed an antipsychotic specifically to keep him from getting out of bed and wandering. The guidelines in Holland are the same as they are here - these drugs should only be prescribed in elderly people with dementia if they are aggressive, violent and in danger of harming themselves. They pose a considerable health risk to elderly people, are only effective in 20% of people and then for no longer than 6 weeks.

My father was given them to keep him quiet. He gets irritable, but is never violent - just restless. He can be distracted. The people looking after him knew what they were dealing with and were supposed to be specialists.

My DM is pursuing this with the hospital, she discharged him as soon as she found out, got medical advice about stopping the antipsychotics and followed it - he is now off them. She will be putting in an official complaint.

I am angry and sad - the relationship of trust between my parents and the medical profession is now lost. My father will now not ever go into a nursing home, which may well be the best option for him, because my mother will never trust anyone with him ever again.

What was his behaviour prior to and immediately after admission?

He's very quiet. He reads, watches TV. He likes to stand at the window when my mum comes home from grocery shopping - she has no-one to be with him when she goes out and online shopping is not feasible for her. The one thing he does is fall - he is physically frail.

He is restless - can't sit still for long - but he does not wander. He's not verbally or physically aggressive ever, though he gets frustrated when things don't work for him. This manifests as minor bad language.

I work in MH, this doesn't sound like justification for antipsychotics to me. He isn't aggressive, violent, or a danger to anyone including himself.

He isn't aggressive, violent, or a danger to anyone including himself.

I hope you're not suggesting that those are the prerequisites for being prescribed antipsychotics!

I see both sides of the problem,your dad sounds lovely by the way but,is it possible he had a uti before admission which may have caused a temporary behaviour change hence meds.How does his behaviour when frasterahted manifest? Is it possible it could be misinterpreted by someone who did nt know him as aggressive or violent? In my past I've had many assaults by confused elderly people who lashed out in fear It's a horrible experience for both party's and often family members rightly said that they were never violent as they were not it was uti related but still unpleasant for all.If I were in your shoes I would ask to speak with senior doctor to find out why drugs were started most reasons should be clearly documented.Its a real pity that you and your family have lost faith in proffesionals.Your mother will need some respite at some point in the future and this should be encouraged so she herself does not become exhausted and worn down by caring.Not all homes are the same.If you are unhappy contact altzimers association or similar for recommendations.Your mum sounds like an amazing woman but please for her sake find some form of support for her even if it's just a lunch club or day centre to give her a break the strain of caring for your dad must be huge.Truly it's a horrible horrible disease Good luck.

YANBU. OP.

Obviously the prerequisites to anti psychotic medication is exhibiting psychotic behaviour charity but it is well known that such medication has been abused in the past, which is what OP is alluding to. Some compassion may not go a miss.

I think your mum is right to persue this with the hospital. What tpe of support is available to her snd your father? Are there good advocacy services local to her?

Obviously the prerequisites to anti psychotic medication is exhibiting psychotic behaviour

That's only partially true. Antipsychotics being just another name for sedatives are used to treat a lot of other (non-psychotic) symptoms/conditions too.

Does your dad have Lewy body dementia (Parkinson's dementia?). Mine does too. I'm so sorry, it's an awful illness. I also work in a mh related role, and have done lots of reading about LBD. As far as I'm aware, anti psychotics can actually be particularly dangerous for LBD sufferers so to give them at all would be unreasonable.

Charity, antipsychotics in elderly people with dementia are particularly contra-indicated because they 1) are not proven to be effective (only in 20% of cases), 2) even if effective only work for about 6 weeks and 3) most importantly - carry a proven risk of stroke which does not happen in younger people. Research by Dr Sube Banerjee, who is an expert in the field, has shown that over a population the size of the Netherlands, this would lead to 650 - 750 unnecessary extra deaths a year. I work in MH, I know what I'm talking about - can you see why I am upset? Antipsychotics have their place, but specifically NOT for the vast majority of this population. Do a bit of research before commenting and assuming I don't know what I'm talking about.

DickCrack yes, he does have LBD, which is why I am so angry with the hospital. He does not lash out physically - as I've described above, the worst he gets is mildly verbal, and never at people. He also does not have a UTI, he was screened before admission. I'm convinced - as my mother is - that the drugs were used for the convenience of the nursing staff, not for any other reason. And believe me, that kind of abusive prescribing is not unusual - not here in the UK, not in Holland.

It is very bad practice she should make a formal complaint.

I'm an older people's psychiatrist. Practice in the UK has changed a lotin the last 5 years or so (a lot of it thanks to Sube Banerjee for really highlighting the issue).

Antipsychotics did used to be over prescribed to sedate elderly people in care homes with 'challenging behaviour' and a lot of the time it was just failure to manage their needs properly. They have been proven to shorten life expectancy, reduce mobility and increase falls.

On the other hand there are situations where it can still be necessary for instance if the person is genuinely psychotic with hallucinations or delusions that trouble them a lot or they are very aggressive and other things like behavioural techniques have been tried and failed. Even then it should be for the shortest time possible and regularly reviewed.

Thanks, mamadoc - it's really helpful to have affirmation from someone who's in the profession. I've been trying to help my mum articulate the arguments for her complaint - she is a lay person. Last night I talked to my aunt, who did not understand at all why what happened was not OK. There's a lot of ignorance about this topic still, and I need to help my mum voice her arguments backed by as much information as possible, and using the right vocabulary.

Were the anti-psychotics appropriate for someone with Lewy Body Dementia? If not (and you clearly know this is extremely important) then you are quite right to complain as I cannot see what they are achieving by their assessment if they don't know basic medical facts about your Dad's condition.

Whether they were right or not to prescribe something to stop him getting up I'm not sure without being there (but from your description they probably weren't). This element I would have thought could have been resolved by discussion with the treating team but the absence of knowledge of LBD cannot.

Kundry antipsychotics are contra-indicated for people with LBD and in general for elderly people with dementia. Which is why I am so angry. Both typical and atypical antipsychotics are a risk factor for stroke in this population.

They were supposed to be assessing why he was suddenly falling so much more frequently and were supposed to be experienced practitioners in Parkinsons Disease. I don't know what went wrong, but it sounds like everything went wrong, given that they seemed to have no idea how to deal with what are pretty typical symptoms of someone with PD and LBD (wandering, restlessness).

In the UK antipsychotics have a 'black box' warning advising prescribers of the risks in dementia sufferers and most UK drs are aware and have changed their practice.

It is especially bad for LBD as they will worsen the PD symptoms. It will make him more likely to fall.

The only reason could be for genuine psychotic symptoms which are causing distress and these are more common in LBD than Alzheimer's so I guess just make sure it is not that otherwise it seems a bizarre decision.

mamadoc he is not having psychotic symptoms. He gets a bit irritable when things don't work for him/when he can't find things. He may use some mildly bad language. In strange surroundings (i.e. a hospital ward) this could be aggravated.

The same awareness raising exercise that took place in the UK also happened in Holland - the Dutch government specifically consulted Sube Banerjee because of his expertise (good on them) and guidance was updated. There just doesn't seem to be an excuse for this particular ward team.

My mum is making sure she has all the info and will be contacting the consultant neurologist in my Dad's case to track down the decision making process in his case before she finalises her complaint and puts it in, I just want to support her in getting it right. Thank you again for your input, it's most valuable.

This is a deprivation of liberty in our country and would be subjected to a best interest meeting.

thetrackisback I'm hoping we will end up with whatever the Dutch equivalent is.

I would suggest that he is at increased risk of falling because LBD causes problems w/ spatial awareness leading to spatial disorientiation. When you have an increased risk of falls and bumps, the Px of medication that can cause or worsen ataxia, disorientation and awareness upon wakening is contraindicated unless the risk to self from psychotic symptomatology is deemed to be greater. (I am an RMN/ DH used to be Modern Matron of EMI/organic unit.

mignonette exactly the point that needs to be made in the complaint, thank you for wording it so well. I will translate it into formal Dutch for my mum to use (she is capable of this herself in terms of language ability but isn't as familiar with the medical terminology as I am).

Bless you all for being so supportive and helpful.

OP - YANBU. You've had some good advice from mamadoc. Take this further.

Charityfunday - "Antipsychotics being just another name for sedatives are used to treat a lot of other (non-psychotic) symptoms/conditions too."

Antipsychotics are not another name for sedatives. By "sedatives" people usually mean benzodiazepines, or tranquilisers. Antispychotics (neuroleptics) work differently. Sedation is sometimes a side effect (which is why they have been used inappropriately in dementia patients) but it's not their primary function - they act on dopamine, mainly, with knock on effects on other neurotransmitters. Which is why they are dangerous for Parkinsons sufferers (because Parkinsons disease involv es dopamine deficiency, and these drugs lower dopamine levels). Yes, they are used to treat certain other mental health conditions (such as to augment the effect of an antidepressant, for example), but this particular scenario is not an appropriate use of these medications. Others have outlined why.

Pointy I wish you, your Mother and Father well.

I can categorically confirm that anti psychotics, anxiolytics and hypnotics have sadly been used instead of nursing and other non pharmacological interventions many many times in the NHS. It shouldn't happen but it has and sadly still sometimes is. Not something I would do. Good nursing observation and environmental management will minimise the risk associated w/ nocturnal wandering. Drugs are not necessary w/ adequate staffing levels and proactive care.

Thank you once again, mignonette.

My Dad's consultant is on holiday, so we have time to put the facts in order in the right terminology. Depending on the consultant's reaction, my Mum will decide whether or not to go ahead with a full complaint - I still think she should do so regardless and get referred to a different hospital, since she has options, but it is ultimately her decision. I'll support her no matter what.