• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

AD DRUGS - or others....??

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear All,

I have just received a report from the NHS Trust for the Nursing Home where my father is staying.

They have just informed me that they have 'recently' discontinued his Aricept treatment. This has been done with absolutely NO prior consultation with me. As Power of Attorney for my father, I assume that this power should cover pretty well every aspect of his life - including which drugs are prescribed for his wellbeing. Interestingly, it also coincides with an application for continuing care, since after 8 years of paying care fees for both my parents, the money is all but finished.

I also note that amongst the list of drugs that have been substituted instead are Zopiclone which appears to be an hypnotic drug to promote long periods of sleep.

My mother was prescribed this drug which turned her into a total blob until our very caring Consultant Psychiatrist was notified and prescribed Ebixa. Instead of being a zombie, my mother was able to articulate clearly and even wash and dress herself after a month on Ebixa and she lived for a further 2 years afterwards. I now wonder if she too was taken off Ebixa without my knowledge.

My father is now also now being administered QUETIAPINE 25mg b.d. [Does anyone know what this b.d bit stands for?]. I have just checked the FDA website for this drug which is listed as a drug used to treat the symptoms of Schizophrenia - NOT Altzheimers. I quote:

IMPORTANT WARNING:

'Studies have shown that older adults with dementia [significant loss of intellectual abilities, such as memory, severe enough to affect social or occupational function] who take antipyschotic medications such as Quetiapine to treat behavourial problems have an increased chance of death. Quetiapine is not approved by the FDA for use in the treatment of behavioural disorders in older adults with demetia. Talk to the doctor who prescribed this medication if you, a family member or someone you take of is taking Quetiapine to treat behavioural problems associated with dementia'.

For more information visit the FDA website: http://www.fda.gov/cder.

I shall be ringing the NH tonight to insist that my father discontinues this drug immediately!

Jude
 

Cate

Registered User
Jul 2, 2006
1,370
Newport, Gwent
Hi Jude

So sorry to see that things are really not going well for your dad.

b.d. means twice daily.

Not sure that Power of Attorney does extend beyond the financial, I'm sure someone else will be able to advise you on that one.

I hope you manage to get his medication sorted out soon.

Best wishes

Cate
 

sue38

Registered User
Mar 6, 2007
10,854
51
Wigan, Lancs
As Power of Attorney for my father, I assume that this power should cover pretty well every aspect of his life - including which drugs are prescribed for his wellbeing
Dear Jude,

The problem with the current EPA's, and I understand one of the reasons for bringing in the new Lasting Powers of Attorney(LPA), is that they only give authority to deal with financial affiars and don't give the attorneys any authority over care and treatment.

Under the Mental Capacity Act there will be two types of LPA:- one for Property and Affairs and the other for Personal Welfare. The LPA's are only due to come in on the 1st October 2007.

Still doesn't excuse the NH from not consulting or even informing you of their decision to stop medication but I'm not sure of your legal footing here. Maybe someone else will know and I will look into it.

Sue xx
 

daughter

Registered User
Mar 16, 2005
824
Hi Jude,

I'm sorry to hear about your father. This happened to my Dad when he went to hospital for an assessment after being aggresive in his Home. He was put on Haloperidol (an antipsychotic) at the same time as being taken off Excelon for his AD. We would not have been told any of this if it hadn't been for the Head Nurse from his NH reading the hospital notes. I don't know if this will help..

http://www.alzheimers.org.uk/TalkingPoint/Discuss/showthread.php?t=3555

..and I expect you have seen the Factsheet about these drugs, but I hadn't thought about looking it up at the time, so thought I'd mention it:

http://www.alzheimers.org.uk/Caring_for_someone_with_dementia/Unusual_behaviour/advice_drugsbehaviour.htm

Hope the phone call goes ok tonight.

Best wishes,

Hazel.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Jude

How awful for you. I would have thought that even without POA you would have been consulted about your father's medication.

I'm sorry, I don't know where you are. I guess from the time of your posting that you're over here at the moment. Here in Scotland we have Welfare POA, which does cover medication, resuscitaion, etc. and I believe they will also be covered in the new EPAs from October.

Certainly I would want to know why your father was prescribed medication that was conta-indicated for dementia. The mind boggles!

I hope you manage to get some answers. Let us know.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I think b.d. means twice as day (as in bis in die). It's als0 written as bid.

Jennifer
 
EPA or PA

Hello Jude

If you have Enduring Power of attorney the document should state the conditions. As stated above it is mainly financial although in one magazine I have it says

What are my duties as an attorney?
You must act in the best interests of the donor and consider
their needs and wishes as far as possible.
You must not take advantage of the donor’s position to gain
any benefit for yourself.
You must keep the donor’s money and property separate from
your own and other people.


How do I use the EPA?
You should tell everyone who needs to know about the EPA
that it has been registered. This includes banks, the Benefits
Agency, the Inland Revenue, pension schemes, nursing homes
and so on. These organisations will, in turn, probably need to
see a certified or office copy of the registered EPA, although
some may want the original.


However what Sue says is very important for us all starting this April and in particular October. Check this out http://www.dca.gov.uk/menincap/legis.htm#reldocs

Best wishes

Brian
Finland
 

Nebiroth

Registered User
Aug 20, 2006
3,511
In England, at least, neither Power of Attorney nor Enduring Power of Attorney give the Attorney any powers to decide on health issues for the Donor.

I believe that the new Lasting Power of Attorney does optionally allow this (the Donor decides when they make it). However, LPA's won't automatically replace existing POA's or EPA's (for obvious reasons).

AFAIK 2x25mg of Quitiapine is a low dose, my Dad is on 8x25mg and even that is not the maximum.
 

sue38

Registered User
Mar 6, 2007
10,854
51
Wigan, Lancs
Enduring and Lasting POAs

As I have mentioned before the following link is useful:
http://www.guardianship.gov.uk/downloads/Quick_Guide_to_EPAs_and_LPAs.Mar07.pdf

But yes, you are right, an EPA will not automatically become an LPA after October 2007. If you have done an EPA before October it will stay in force. If you want to give someone the right to make decisions about your care you will need to do a new LPA, but you can't do one until after October.

Sue
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I know from what I was told from the lady from the memory clinic when she came around to do another memory test on my mother last year , who is on Exbix scoring 10 , told me that if mum was in a permanent care home and they thought the medication was not working for her they would stop it , expectedly if her scoring was under 10

But would let her keep taking it if my doctor thought it was benefiting my mother , that why I will not put my mother in a care home , and keep having respite till I feel that the medication not working for my mother , she been on it for 5 years now , also she said that I was lucky that my doctor is still giving it to my mother because her scoring is 10 and if PCT I think its called took the funding away from my doctor she would not get it

I do think it is disgraceful that they did not tell you before stoping the medication
 

Natashalou

Registered User
Mar 22, 2007
426
london
Presumably

Presumably though, there will be a number of vulnerable people (my mother among them) where an EPA has already been registered but she no longer has the mental capacity to sign a LPA?
 

sue38

Registered User
Mar 6, 2007
10,854
51
Wigan, Lancs
Presumably though, there will be a number of vulnerable people (my mother among them) where an EPA has already been registered but she no longer has the mental capacity to sign a LPA?
Absolutely:(
 

sue38

Registered User
Mar 6, 2007
10,854
51
Wigan, Lancs
Although have just had a glance at the Mental Capacity Act and when it comes into force it seems that you will be able to apply to the Court of Protection/Public Guardianship Office to be appointed as a 'deputy'. This can give you the power to make decisions about welfare.

I anticipate that as the current application to the Court to be appointed as a receiver is more complicated and expensive than an EPA, so will an application to be appointed a deputy be more complicated and expensive than an LPA.

Sue xx
 

capybara

Registered User
Jan 10, 2007
32
Re: Medication for your father

I too am unhappy with the treatment of my father, to date he has not been prescribed anything to treat his Alzheimers symptoms.
He too is on Quietapine, it is used as an anti agitation drug for patients with Alzheimers.
I recieved some advice from a Doctor on obtaining a second opinion although it will have to be done privately the only way I can see of getting my father the treatment he deserves. The information follows in the next paragraph
Good luck



You could also request a tertiary review at a specialist Dementia Clinic. For instance, Addenbrookes has a specialist dementia clinic. Department of Neurology, Addenbrooke’s NHS Trust, Cambridge CB2 2QQ, UK. There is also one at the Maudsley Hospital with a doctor called Martin Rossor. http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Neurology+and+Neurosurgery+(National+Hospital+for+Neurology+and+Neurosurgery)/Prof+Martin+Rossor.htm
 

Clive

Registered User
Nov 7, 2004
716
My mum was taken off her Aricept when her mental test score was 12. I understood this was what NICE said should happen. Think the score is now 10 when you have to come off.
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Hi All,

Thanks for your helpful messages. I have a few points to make here -

Firstly, if POA's only cover financial arrangements, then perhaps we all need to lobby to have that amended to cover physical wellbeing and drug administration as well. It's seems a pretty crucial issue to me!

When I placed my parents in NH care in 2005, I assumed that all the the care and drug procedures instigated by their Consultant Psychiatrist at the time - and which I had religiously followed for the preceding 8 years - would remain in place. Their CP had always consulted me about any change in their medication and visited us regularly at home to discuss matters.

I had no idea that they would be passed on to another Doctor who would alter their drug routines without prior consultation with me. I now wonder how soon it was before my mother was taken off Ebixa before she died? She wasn't actually ill at all - and the cause of death was only stated as complications from AD.

I am amazed at the report I have just received from the NHS. It basically categorises all the symptoms of degeneratation of my father's health since December 2006. It then lists all of the drugs that he has been given since then to 'help' him. What this report does not state is that all of these symptoms of degeneration manifested fairly mmediately after he was taken off Aricept in Nov 2006.

The report does mention that Quetiapine is being given to my father in doses of 25mg twice daily [thanks for that info Jennifer].

This drug is supposed to be used only to treat patients with Schizophrenia and is NOT for the elderly with dementia. Not only is is NOT recommended, there is a massive warning at the top of the page of the FDA listing which states fairly categorically that it must NOT be given to elderly people suffering dementia!

The report goes on to say that my father is 'unable to verbalise his needs/cannot assess his environment safely/is cognitively impaired, and falls frequently. He cannot also express discomfort or pain and he will only speak when prompted'

Yeah, well if I was pesonally being stuffed full of Schizophrenia drugs on a daily basis then I think I'd probably have a bit of a problem with verbalising my needs too!!

Capybara - do follow this up for your father too.

I rang the NH and insisted that they take my father off Quetiapine immediately. If that doesn't happen by tomorrow on my follow-up phone call, then I will probably be planning an impromtu trip to the UK to sort things out. I just fear that it is now too late and the damage has been done.

Jude
 

sue38

Registered User
Mar 6, 2007
10,854
51
Wigan, Lancs
Originally LPAs were due to come in on the 1st April but as I understand that the exact details of the form had not been worked out this date has now been moved to the 1st October. Who knows.. it may be delayed beyond that date.

Sue