ECT for depressed dementia sufferer?

sheila b

Registered User
Dec 10, 2012
3
West Yorkshire
Mum was diagnosed with combined Vascular dementia and Alzheimer's back in Oct 2010. She has suffered from depression on and off for over 50 years. She moved into residential care in Nov 2013 and was relatively settled for around 10 months, but since October just gone her depression has returned with a vengeance. She is refusing most food and drinks very little. Her Psychiatrist has visited several times, and has now suggested Mum might benefit from a stay in a mental health unit, with the possibility of a course of ECT treatment. I never went down the route of obtaining lasting power of attorney, so effectively the decision may be taken out of my hands. I would be really interested to hear from anyone who has had a similar experience, particularly if anyone has had a loved one who has gone through this treatment, and what the results were. I am certain that Mum would decline the treatment if she had the mental capacity to do so.
 

garnuft

Registered User
Sep 7, 2012
6,585
Side effects and alternatives

What are the side effects of ECT?

The most important side effect of ECT, and the one which causes most concern, is memory loss. (This is also a recognised effect of fits caused by epilepsy.) It is usually a short-term effect, and most people find their memories gradually return as they recover from ECT. However, for some people, memory loss can mean both losing personal memories, and having difficulty remembering new information. Some people have been so badly affected that they have lost key skills or knowledge.

Other side effects that may occur immediately after treatment are:
•drowsiness (you may sleep for a while)
•confusion
•headache
•feeling sick
•aching muscles
•loss of appetite

Very rarely, people may experience prolonged fits, especially if they are taking drugs or have medical conditions which lower the seizure threshold (see 'How ECT is given').

Some people have had injuries to their teeth or jaw, or other muscles, but physical injury from the convulsions should be minimised by the muscle relaxant.

The general anaesthetic (as for any procedure where it is used) carries a risk of illness and a very small risk of death, separate from the ECT treatment itself.

Some people may become very confused between treatments, and on rare occasions may become restless or agitated.

Some of the symptoms listed above may subside quickly, but some may last for weeks, months, or even permanently.

Longer term effects include:
•apathy (loss of interest in things)
•loss of creativity, drive and energy
•difficulty concentrating
•emotional blunting
•learning new information
•memory loss.

I did experience short term memory loss following the treatment but that gradually faded with time… I would choose to have the treatment again if I needed it.

What are the alternatives to ECT?

If the NICE guidelines are being followed, you will only be offered ECT (in most cases) if you have tried other treatments and found them unsuccessful, unhelpful or unacceptable. These should have included talking therapies, antidepressant drugs, and perhaps arts therapies. (See depression, talking treatments, antidepressants and arts therapies for more information.)

Another physical treatment which is considered to be comparable to ECT is transcranial magnetic stimulation, a technique which stimulates the brain using magnetic fields. This is still being researched, and is not generally available in the UK at the moment, unless you are taking part in research.

In addition, if nothing else has helped and you are still severely depressed, you may be offered neurosurgery for mental disorder, vagus nerve stimulation, or deep brain stimulation. See neurosurgery for mental disorder for more information on these treatments.
I would be horrified at the idea that a Psychiatrist could even think of ECT as a possible therapy.
The general anaesthetic required is sufficient reason for it to be avoided besides any other reason.

I would insist on a best interest meeting to ensure NO such treatment is given without rigid enquiries.

Consent to treatment - Capacity

Consent-to-treatment


Assessing capacity to give consent

All adults are presumed to have sufficient capacity to decide on their own medical treatment, unless there is significant evidence to suggest otherwise.

What is 'capacity'?

"Capacity" means the ability to use and understand information to make a decision, and communicate any decision made.

A person lacks capacity if their mind is impaired or disturbed in some way, and this means the person is unable to make a decision at that time.

Examples of how a person's brain or mind may be impaired include:
•mental health conditions – such as schizophrenia or bipolar disorder
•dementia
•severe learning disabilities
•brain damage – for example, from a stroke or other brain injury
•physical or mental conditions that cause confusion, drowsiness or a loss of consciousness
•intoxication caused by drug or alcohol misuse

Someone with such an impairment is thought to be unable to make a decision if they cannot:
•understand information about the decision
•remember that information
•use that information to make a decision
•communicate their decision by talking, using sign language or by any other means

How capacity is assessed

As capacity can sometimes change over time, it should be assessed at the time that consent is required.

This will usually be done by an appropriately trained and experienced health professional who is either recommending the treatment or investigation, or is involved in carrying it out.

If the health professional feels you have the capacity to give your consent, your decision will be accepted and your wishes will continue to be respected, even if you lose capacity at a later stage.

If the health professional feels you don't currently have the capacity to give consent, and you have not made an advance decision or formally appointed anyone to make decisions for you, they will need to carefully consider what is in your best interests before making a decision.

Respecting personal beliefs

If someone makes a decision about treatment that other people would consider to be irrational, it does not necessarily mean they have a lack of capacity, as long as they understand the reality of their situation.

For example, a person who refuses to have a blood transfusion because it is against their religious beliefs would not be thought to lack capacity. They still understand the reality of their situation and the consequences of their actions.

However, someone with anorexia who is severely malnourished and rejects treatment because they refuse to accept there is anything wrong with them would be considered incapable. This is because they are regarded as not fully understanding the reality of their situation.

Determining a person's 'best interests'

If an adult lacks the capacity to give consent, a decision on whether to go ahead with the treatment will need to be made by the health professionals treating them. In order to make a decision, the person's "best interests" must be considered.

There are many important elements involved in trying to determine what a person's best interests are, including:
•considering whether it is safe to wait until the person can give consent, if it is likely they could regain capacity at a later stage
•involving the person in the decision as much as possible
•trying to identify any issues the person would take into account if they were making the decision themselves, including religious or moral beliefs; these would be based on views the person expressed previously, as well as any insight close relatives or friends can offer

If a person is felt to lack capacity, and there is no one suitable to help make decisions about medical treatment, such as family members or friends, an independent mental capacity advocate (IMCA) must be consulted.

Involving the Court of Protection

In situations where there is serious doubt or dispute about what is in an incapacitated person’s best interests, healthcare professionals can refer the case to the Court of Protection for a ruling. This is the legal body that oversees the operation of the Mental Capacity Act (2005).

Situations that must always be referred to the courts include:
•sterilisation for contraceptive purposes
•donation of organs or regenerative tissue, such as bone marrow
•withdrawal of nutrition and hydration from a person who is in a permanent vegetative state or minimally conscious state

Changes in capacity

A person's capacity to consent can change. For example, they may have the capacity to make some decisions but not others, or their capacity may come and go.

In some cases, people can be considered capable of deciding some aspects of their treatment but not others. For example, a person with severe learning difficulties may be capable of deciding on their day-to-day treatment, but incapable of understanding the complexities of their long-term treatment.

Some people with certain health conditions may have periods when they are capable and periods when they are incapable. For example, a person with schizophrenia may have periods when they are considered capable, but they may also have psychotic episodes (when they cannot distinguish between reality and fantasy), during which they may not be capable of making certain decisions.

A person's capacity can also be temporarily affected by shock, panic, fatigue (extreme tiredness) or medication.

If a person knows that they may eventually not be capable of making certain decisions, they can make an "advance decision" (previously known as an advance directive or "living will"), stating any treatments they would like to refuse in case of future incapacity, or they can formally give someone power of attorney to make decisions about their health for them.

Advance decisions and power of attorney

If a person knows their capacity to consent may be affected in the future, they can choose to draw up a legally binding advance decision.

An advance decision sets out the procedures and treatments that a person refuses to undergo. This means the healthcare professionals treating the person cannot perform certain procedures or treatments against their wishes.

For an advance decision to be valid, it must be specific about what the person does not want done and under what circumstances. For example, if they want to refuse a certain treatment, even if by doing so their life is at risk, they must clearly state this.

If the person specifically states in their advance decision that they do not want to undergo a particular treatment, this is legally binding. The only exception may be if that person is being held under the Mental Health Act (1983). This is an act that allows some people with mental health problems to be compulsorily detained in a psychiatric hospital.

The healthcare professionals must follow the advance decision, providing it is valid and applicable. If there is any doubt about the advance decision, the case can be referred to the Court of Protection.

You can also choose to formally arrange for someone, often a close family member, to have lasting power of attorney (LPA) if you wish to anticipate your loss of capacity to make important decisions at a later stage. Someone with LPA can make decisions about your health on your behalf, although you can choose to specify in advance certain treatments that you would like them to refuse.

Read more about advance decisions and power of attorney.
Speak up loudly, mention lack of capacity.
All clinicians are required to justify their decisions and where incapacity is part of the equation they MUST adhere to the Mental Capacity Act...if they wish to proceed against what you say would have been your mother's wishes and indeed your wishes they will have to apply to the Court of Protection to proceed.

I suggest you mention..'Best Interest meeting' 'Mental Capacity Act' and 'Dispute and Court of Protection' to the Psychiatrist and inform him you want NO such treatment undertaken until there has been a best interest meeting and EVEN THEN, you will appeal to the Court of Protection for a ruling.

Contact the Court of Protection




The Court of Protection makes decisions on applications which involve people who lack mental capacity.

You can contact the court if you have a query about an application:
that deals with someone’s personal welfare
to become a deputy or change an existing deputy order
concerning deprivation of liberty
to sell jointly owned property
to make a statutory will or gift
to cancel an enduring power of attorney
to object to a lasting power of attorney

The HM Courts and Tribunals website has:
guidance on making applications
a full list of application forms


Court of Protection
courtofprotectionenquiries@hmcts.gsi.gov.uk
Telephone: 0300 456 4600
Monday to Friday, 9am to 5pm
Find out about call charges

You can also write to the Court of Protection or visit the public counter.

Emergency applications

Contact the Court of Protection if there’s a situation that needs an urgent decision, eg when you want to stop someone who lacks mental capacity being removed from where they live.

Ask to speak to the urgent business officer when you call.


Emergency applications
Telephone: 0300 456 4600
Monday to Friday, 10am to 4pm
Find out about call charges


Out-of-hours emergency applications
Telephone: 020 7947 6000
Find out about call charges
 

Sue J

Registered User
Dec 9, 2009
8,035
Sadly it seems we're not out of the dark ages yet:( I am horrified that any Dr can consider administering ECT to a dementia sufferer. Yes I have personal experience of it being administered to close relative s and friends and have witnessed it professionally being administered and cannot describe how strongly from the depth of my being I am against this.

Yes, they may witness a very short lived positive effect but they never, in my experience follow up long enough nor listen to those close who can verify how much it can change the already suffering person detrimentally, are they there with the extra help and support? I doubt it.

I would put your wishes and what you believe would be your Mum's too, in writing and send a copy to every relevant person, GP, SW, PALS, and anyone else you consider relevant in your Mum's care. In my view it is long past the time this barbaric practice is stopped.

Wish you well as you fight for your Mum
Sue
 

Soobee

Registered User
Aug 22, 2009
2,734
South
I'm horrified by this suggestion. We still don't know enough about ECT to use it on anyone who has a disease of the brain.
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
Mum was diagnosed with combined Vascular dementia and Alzheimer's back in Oct 2010. She has suffered from depression on and off for over 50 years. She moved into residential care in Nov 2013 and was relatively settled for around 10 months, but since October just gone her depression has returned with a vengeance. She is refusing most food and drinks very little. Her Psychiatrist has visited several times, and has now suggested Mum might benefit from a stay in a mental health unit, with the possibility of a course of ECT treatment. I never went down the route of obtaining lasting power of attorney, so effectively the decision may be taken out of my hands. I would be really interested to hear from anyone who has had a similar experience, particularly if anyone has had a loved one who has gone through this treatment, and what the results were. I am certain that Mum would decline the treatment if she had the mental capacity to do so.
I don't know about the legalities, but I would have thought the move in itself, and the treatment, could be very distressing for anyone with dementia. Is the treatment suggested partly because she is refusing food? I may be in a minority of one here, but choosing whether to eat is just about the only choice someone with dementia usually has left once they are in residential care, and personally I think they should be allowed that choice.
 

CeliaThePoet

Registered User
Dec 7, 2013
614
Buffalo, NY, USA
ECT was recommended for my extremely depressed/suicidal mother who is 85, as no medicines have ever eased her depression. I've done a great deal of research on it and would consider it as an inpatient course since we are at a stage of last resort. (The sedation is very worrying, but studies show that a remarkable recovery can be made with this treatment.) In your mother's case, from what you have described, I do not think it is merited. Have they tried more than ten medicines? Is she suicidal or a danger to others?
 

Tin

Registered User
May 18, 2014
4,825
UK
Just amazed that someone would suggest ECT as a possibility for a dementia sufferer. What does your mother's consultant or gp think? Do not allow this to happen.
 

canary

Registered User
Feb 25, 2014
11,328
South coast
This sounds dreadful to me.

As a previous severely depressed survivour I have seen people who responded very well to ECT treatment, but for a patient with dementia.....?

Its just wrong
 

sheila b

Registered User
Dec 10, 2012
3
West Yorkshire
I don't know about the legalities, but I would have thought the move in itself, and the treatment, could be very distressing for anyone with dementia. Is the treatment suggested partly because she is refusing food? I may be in a minority of one here, but choosing whether to eat is just about the only choice someone with dementia usually has left once they are in residential care, and personally I think they should be allowed that choice.
Thanks Witzend. I think the suggestion of the treatment is mainly regarding the refusal of food. I totally agree that choosing not to eat is exactly that - a choice, and I also feel that the choice should be respected. Thanks again.
 

Peegee

Registered User
Jan 22, 2015
17
Mum was diagnosed with combined Vascular dementia and Alzheimer's back in Oct 2010. She has suffered from depression on and off for over 50 years. She moved into residential care in Nov 2013 and was relatively settled for around 10 months, but since October just gone her depression has returned with a vengeance. She is refusing most food and drinks very little. Her Psychiatrist has visited several times, and has now suggested Mum might benefit from a stay in a mental health unit, with the possibility of a course of ECT treatment. I never went down the route of obtaining lasting power of attorney, so effectively the decision may be taken out of my hands. I would be really interested to hear from anyone who has had a similar experience, particularly if anyone has had a loved one who has gone through this treatment, and what the results were. I am certain that Mum would decline the treamtment if she had the mental capacity to do so.
About 6 years ago my aunt was given several ECT treatments for geriatric depression and It was dreadful to see this lively, chatty, funny lady become completely apathetic and unable/unwilling to communicate at any level with us. She was anxious and sad. I don't know if the treatment would have worked in the end as she died in the mental hospital with a DVT due, I think, to her sitting on her own all day long. I was horrified when I found out that they still carried out ECT at all and I saw no positives from its use on my lovely aunt.
 

sistermillicent

Registered User
Jan 30, 2009
2,949
It sounds barbaric, and I agree that the risk of a general anaesthetic alone is great, never mind the treatment itself.
Being of suspicious mind I would want to be very sure that the psychiatrist was not involved in some research project into the effects of ECT on a patient with dementia.
not that it would make any difference, I would still fight it.
 

MReader

Registered User
Apr 30, 2011
191
essex
My husband's psychiatrist suggested ECT for him about 4 years ago - following a stroke which caused his dementia & depression. It was probably a last resort as she had already treated him with all sorts of anti-depressants, none of which worked.
(My mother had this treatment in the 50's & left her very 'peculiar' for the rest of her long life)
So when it was suggested for my husband, I spoke with our GP, our contact at the local Alzheimer's Society & the family who all said it is a bad idea - leaving aside the general anaesthetic issue.
I discussed it again with his psychiatrist & very firmly told her that I did not want my husband to be put through that type of treatment & it was never spoken of again.
Did her psychiatrist tell you what would happen in the future if she has this treatment - how will they follow this up.
 

sheila b

Registered User
Dec 10, 2012
3
West Yorkshire
Thanks all for your comments and some very sound advice. Me and my sister have a meeting with the Psychiatrist again on Tuesday, and I definitely feel much more informed now.