Anti-psychotic drugs:what to do if you are worried - alzheimer scotland information sheet is39
IS 39 January 2011 Information sheet Anti-psychotic drugs: what to do if you are worried
Background
Sadly, this scenario is not uncommon, as we
Alzheimer Scotland has been concerned for
found at our 2010 Annual General Meeting
some years about the extent of the use of
experiences. It has also been recognised by
the Scottish Government, which is committed
to improving care and reducing inappropriate
reduction in their use, while recognising that
they can be helpful in some situations, if
prescribed for as short a time as necessary
What are antipsychotics?
and monitored appropriately. But if you are
The first tranche of anti-psychotics (also
worried about a family member or friend who
known as neuroleptics or major tranquillisers)
is receiving these drugs either in hospital or a
were originally developed in the 1950s; in the
1990s a new group of anti-psychotics were
“My mother was admitted to hospital under a
compulsory treatment order after she was
The main licensed use for anti-psychotics is for
found wandering by the police in the middle of
the treatment of schizophrenia or bipolar
the night. The hospital gave her a drug called
Risperidone then said they wanted to give her
psychotics are now regularly used for the
injections of Haloperidol. I said I wasn’t
treatment of restlessness, aggression and
happy about this but they gave her the drugs
psychiatric symptoms common in people with
dementia. One of these drugs (Risperidone)
really unsteady on her feet and I warned the
has recently been licensed specifically to treat
staff on the ward that I was worried she’d
severe and persistent aggression in people
have a fall. Last week, she fell out of bed and
broke her hip. She has gone from being a
responded to other therapies. The other drugs
physically fit and engaged, if confused, lady to
a frail shell of a person who can’t even speak
to me. I’m so worried about her and don’t
know what to do as the staff don’t seem to listen to me”. Helpline caller
1 Scottish Government, 2010. Scotland’s national dementia strategy.
Anti-psychotic drugs: what to do if you are worried How do I know which drugs are
the dose reduced or the drug withdrawn if
Drugs can be called by their generic name or
by the trade (or proprietary) name given by
Combinations of different sedative drugs are
the manufacturer. The anti-psychotic drugs
strongly discouraged in people with dementia.
What the guidance says
(Largactil); Haloperidol (Haldol, Serenace);
Scottish guidance published in 2006 (the SIGN
Olanzapine (Zyprexa); Quetiapine (Seroquel);
guideline) states “If necessary, conventional anti-psychotics may be used with caution [our emphasis], given their side
Amisulpride (Solian); Aripiprazole (Abilify);
(Promazine); Sulpiride (Dolmatil, Sulparex,
Also in 2006, the National Institute for Health
Sulpitil); Trifluoperazine (Stelazine); Zotepine
and Clinical Excellence (NICE) published a
dementia guideline. A key recommendation of
the NICE guidance is that people developing
these distressing symptoms should first be
nursing staff which drugs are being prescribed
offered an assessment to try to establish any reasons for what is happening. This Side effects
Side effects from anti-psychotics can include
whether the person is in pain or in ill
excessive sedation, dizziness, unsteadiness,
disease (shakiness, slowness and stiffness of
if the person is reacting to something
the limbs), chest infections, ankle swelling and
falls. But recent research has raised concerns
the person’s past history such as their
about even more serious side effects such as a
higher risk of strokes and premature death,
particularly if the drugs are given for long
anti-psychotics should not be used as a
Anti-psychotics may be particularly dangerous
for people with dementia with Lewy bodies
(DLB). If anyone with DLB is prescribed an
2 Scottish Intercollegiate Guideline Network,
The side effects and risk of early death are
2006. Management of patients with dementia:
even greater if anti-psychotics are given
a national clinical guideline. (Guideline 86).
3 National Institute for Health and Clinical
Excellence & Social Care Institute for
Whichever drug is used, treatment with anti-
psychotics should be regularly reviewed and
people with dementia and their carers in health and social care.
Page 2 Anti-psychotic drugs: what to do if you are worried
Before doing so, the doctor should consult
involved with the person, to get their views on
the person’s ability to give consent. The doctor
must record on the certificate the consent of a
the dosage should start low and only
proxy (such as a welfare power of attorney or
guardian) if there is one; or if there is no
treatment should be time limited and
proxy, that the consultation has taken place
Both the proxy and the main carer have the
same right to object to a proposed treatment
records should also record changes in
and to use the procedure for dealing with
disagreements. You can contact the Mental
staff should be trained to anticipate
specialism. The second doctor must consult
with you, the doctor and others with a close
interest in the person. If the second doctor
agrees with the first, then the treatment can
go ahead. But if you still disagree you can go
If the second doctor agrees with you (the
proxy/carer), then the first doctor must
comply or can go to the Court of Session. An
Action to take
appeal to the Court of Session would require
specialist legal advice and could be costly,
Information is power
Family members and friends know the person
best and can help medical and nursing staff to
Treatment without consent can still be given in
understand the person and what might trigger
certificate of incapacity, in order to preserve
changes in the person’s condition after
receiving anti-psychotics and bring these to
If the person is detained under the Mental
Health Care and Treatment (Scotland) Act
Know your rights about medical
2003, he or she can be given treatment for
treatment
mental disorder without their consent (or
There are legal safeguards applying to medical
treatment for people with dementia. If a
relevant decision making powers) if he or she
doctor believes that a treatment will benefit a
patient with dementia who is incapable of
compulsory treatment order. He/she cannot
consenting, the doctor should sign a certificate
be treated without consent if subject to an
of incapacity under Section 47 of the Adults
emergency detention, unless the treatment is
with Incapacity (Scotland) Act 2000 which
required urgently, or he/she is being treated
gives him or her authority to treat the person.
Page 3 Anti-psychotic drugs: what to do if you are worried Raising concerns
Talk to the 24 hour freephone Dementia
If you are worried about the effect of anti-
Helpline on 0808 808 3000. The Helpline
psychotics or think that someone you care for
cannot take direct action on your behalf but it
may have been given anti-psychotics without
can help to talk through your concerns and
you knowing, you should discuss this in the
discuss what steps to take next. With your
first instance with the medical practitioner
permission, the Helpline can arrange a call
(consultant or GP) involved or the person in
charge of the ward or care home. If you are
Scotland staff to discuss your situation in more
not satisfied with the explanation or outcome,
put your concerns in writing. It can help to
keep a diary or record of your observations
This information sheet was first published as
and the sequence of events (who said what
an article in Dementia in Scotland December
Complain
Many people worry about complaining in case
it makes things worse for the person with
dementia but it’s unlikely to get any better if
nothing is said or done. Each hospital or care
home will have a complaints procedure which
Contact the Mental Welfare Commission. Alzheimer Scotland
Their service user and carer freephone line
22 Drumsheugh Gardens, Edinburgh EH3 7RN
0800 389 6809 is open Monday - Thursday
9-5; Friday 9-4.30. The Commission will look
into situations if they think that someone with
a mental illness or learning disability is not
Alzheimer Scotland - Action on Dementia is a company limited by guarantee, registered in Scotland 149069. Registered Office: 22 Drumsheugh Gardens, Edinburgh EH3 7RN. It is recognised as a charity by the Office of the Scottish
If the person you are worried about is in a
care home, you may contact the Care Commission, the body responsible for www.alzscot.org
regulating care service providers and making
sure that they meet National Care Standards. Tel: 0845 603 0890.
In 2009, the Care Commission and the Mental Welfare Commission produced a report Remember I’m still me which looked at the quality of care for people with dementia in care homes. The report found that a third of the residents in the homes they looked at were receiving anti-psychotics; there was evidence of inappropriate and multiple prescribing; a lack or regular reviews; and poor recording on personal plans.
Page 4
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