People with dementia failed by Mental Capacity errors

People with dementia failed by Mental Capacity errors

Dementia Alzheimers Represents Alzheimer's Disease And Confusion

Lack of training for professionals in the Mental Capacity Act leaves people with dementia compromised

A survey carried out by the Alzheimer’s Society has found that many people with dementia are not properly consulted when decisions about them are made.

It also found that many people with dementia feel they are not properly supported in making decisions.

A lack of awareness and understanding of the Mental Capacity Act on the part of health and social professionals is partly to blame and leads to Mental Capacity errors. Not only is there a lack of understanding of what a Mental Capacity Assessment is, but may people seem to confuse the Mental Capacity Act with the Mental Health Act. The two things are not the same.

We heard recently from a family whose mother was in hospital. Prior to various meetings with the discharge team and with the NHS Continuing Healthcare assessment team, the son rightly questioned whether a Mental Capacity Assessment had been carried out.

The reply from the nurse was shocking: She said that that Mental Capacity Assessments don’t apply to people with dementia – and that for people with dementia the only thing that matters is an assessment of their financial means.

Even without the last part of her comment, it’s a shocking example of what goes on.

You can read more about the Alzheimer’s Society survey here, and you can read more here about Mental Capacity Assessments – and when they should be carried out.


  1. Jackie 4 years ago

    Hi Angela, Thank you for your advice. They are still saying they cannot email it outside of the NHS but I will try to get a hard copy instead. Someone within the trust rang me about the issue of Dad still being in hospital and my not being terribly willing for him to go back home and used the words “evict him”…. so can they really evict a 90 year old WW2 war veteran?

  2. Jackie 4 years ago

    Hi, does anyone know if I (daughter with LPA) have the right to see the completed Continuing Health Care Checklist or the completed Mental Capacity checklist. Dad’s hospital doctor says he can’t email it outside of the NHS trust? Hope someone can answer my question….

    • Angela Sherman 4 years ago

      Jackie – yes you do. You are acting on behalf of your dad, and you can’t act properly in his Continuing Healthcare case unless you have a copy of all assessment forms. This is normal, so the hospital doctor should not stop you receiving a copy. If you still get nowhere with him, the Continuing Healthcare team should send you a copy.

  3. Chris H 5 years ago

    When assessing someone to get NHS CC has anyone gone down the route of getting a Neurological Assessment to prove the Health categorisation?

  4. Chris-G 5 years ago

    Update to above 2014 incidents.

    Aug 2015: Father-in-law (FIL) been in hospital again, for almost two weeks. Every single day, had to tell the entire tale to different nurses and doctors about his past seizures and heart stoppages. (with varying levels of understanding or interest from the nurses).
    First night he was swivel eyed and unresponsive and it was actually us on our arrival, and not his nurses that noticed. The NHS’s first reaction was to have a long meeting with us to discuss if he was to be resuscitated if his heart stopped. It later proved that he was completely aware of what was being said around him but he could not respond. Just as well we had the majority of the meeting away from his bed.

    Had to keep telling the staff that he was not a particularly humorous man and that often when he was saying or doing something that was irrational and did not make sense, that he was not trying to be humorous, he was in fact displaying a mental capacity failure (**** see below). Such as, waving a tenner about and demanding that someone “get me a pint and get one for yourself”. Or how about. “You go and have a game of snooker while I chat to (imaginary pub mate)”. By his description, he was overlaying the ward on the pub and insisting that he knew he was in hospital, could tell us which hospital but then demanding that we get him pint from the bar. He even pointed to the bar and named the manager.

    That was taken by a nurse as a bit of banter. The next morning he was in intensive care having had yet another seizure and heart stoppage.

    In intensive care almost 4 days now. Every single day we visited. Nurse has asked. Has “XXX” ever had seizures before?” “He’s not on any med’s for it, I just wondered.” This is after discussing in quite some detail with a bowel surgeon and the ITU consultant and stating his full history on the first visit. (His medical records appear to be in two hospitals, even after almost two weeks).
    Does no one ever write anything down anymore?

    Any way, he is starting to come out of the coma and is responding vaguely. The treatment is great. The procedures and record keeping appears abysmal. It is also abysmal that staff do not assess family and decide whether they are neurotic interventionists or if they actually know a bit about care matters and the needs of the patient in particular.

    Throughout this my FiL has not had sufficient mental capacity to make irrevocable decisions. The NHS seems to have disagreed with that point of view, right up to the time of the need for intensive care.

    • Angela Sherman 5 years ago

      **** Remember that Mental Capacity is about the ability to make a specific decision, not about a person’s general cognitive state.

      • Chris-G 5 years ago

        This is a long one sorry!
        The trouble is my father-in-law (FIL) has good cognition and a very good social manner which is a front, that to a degree is self protective. Even after a serious brain injury. He is believable unless almost comatose.

        The trouble is that he can retain information and make limited decisions when he is well and his records show that ability exists but are misunderstood to give him full mental capacity.
        Now, if you asked him what he had been told before being asked to decide…. then that is a very different matter. He will accurately parrot what one says and when asked what it means, he will often translate it as the opposite or even talk about something that has no relevance in the decision to be made. He often frowns as if he knows that what he says is nonsense, then takes a deep breath and continues.
        It is also normal that he will sagely listen and agree with everything said and then in the next breath, demand the often impossible opposite.
        He also makes decisions based upon unshakable false beliefs and in the continuation of old excuses that have no validity. Bearing in mind that years ago, he enjoyed very much more than a pint at his club, he will not drink plain water, “because it blows me up”. (the humorous old drinkers excuse). So he becomes dehydrated if no one will give him the milk that he fails to ask for. Every different nurse that I spoke to about the milk said “of course he can have milk” yet every time we visited (and a different nurse was on duty), he only had water on his table. A table by the way, that he could not reach.
        He does have delusions and does not tolerate novel situations and has limited control of his so called executive functions. For example he will read out entire pages from the newspaper if asked what he is reading. He will start at the very beginning of time if asked for personal information.
        He often overlays rooms and people and becomes visibly confused. He can however, do a crossword without writing down the answers when he is well. (arthritic hands). Even then his judgement and decision making can be based upon what he has very obviously misunderstood and not what was said or meant.
        When he is infected or drugged up on opiates he loses all semblance of common sense but still has the front and social skills….. so he is believed, regardless of the crazy decision.

        It is also not unusual for him to demand two opposite outcomes when given a choice. He will insist to the point of aggression that both, (often mutually exclusive), outcomes are entirely possible. It is usually accepted by strangers as him attempting humour.

        So it is the case that we explain and we ask him over and again over time in regard to irrevocable decisions: Unlike hospital staff who mention a medical or treatment option once and then walk away when he is interpreted as declining their medications or their help. He complains bitterly that nurses even in his home do not stand still and let him talk to them. He says that they say things and before he has had time to understand and answer, they have walked away again.

        It is the case that every admission to hospital (more than 8 times), has been an emergency predicated upon a known serious condition that he does not properly comprehend the seriousness of and so declines early preventative treatment because it is often the case that he does not feel particularly unwell and so to him it is obvious that medics really do not know what they are talking about.

        He even refused to have his exposed thigh bone treated because his earlier surgical wounds had healed and so in his mind these wounds would heal too….. the original wounds of course never healed fully but he never really accepted that as fact. His surgery failed again and left the thigh bone fully exposed and he believed that it would simply scab over like the tiny wounds did before. Regardless that GPs over several weeks were telling him that he would die. He as usual, by way of deflection, agreed with them but insisted that it was their job to help him while his wounds scabbed over. “I want to stay in this hospital not that other one”. Totally misunderstanding that he was in his care home with a massive infected open wound.

        After his emergency treatments that often lead to intensive care or very delayed discharges, he does not remember the incidents at all and so we do not have leverage to make him take things more seriously the next time he becomes ill. I joked with intensive care nurse to day that they should allow photography in the ward, because my FiL never remembers what happened and if he saw a picture, he might actually believe us.

        So…. he has good cognition but variable mental capacity. And who knows when it is good capacity and who knows when it is poor capacity? It takes observation and time to get him to make a genuine well considered decision and only then when he is uninfected and undrugged.

        There is too much reliance upon Mini Mental State Examinations (MMSEs). (Usually reserved to measure and record the decline in cognition over a period of time). It is the case that he scored 30/30 on a MMSE when checked by a psychologist the day after returning home from the yet to fail surgery mentioned above. Yet another surgery and long periods on either side that that he does not recall. He does not even recall the MMSE or the Psychologist visiting. He even asked us what the letter confirming his mental state was about and how did the doctor know.

        He is likened by me to what was described medically many years ago as an “Idiot Savant”. No one would have given such an apparently clever but unworldly person the right to make irrevocable decisions. It was more common to lock them away for their own safety regardless of their other often very high mental abilities.

  5. Chris-G 5 years ago

    My father in law was permitted to refuse post operative (leg re-amputation) meds and that caused him two seizures that both stopped his heart and respiration. His mental capacity was so obviously non existent that I despair of the NHS. He was only having the surgery because of the massive infection and opiate drugs which were of course, affecting his judgement as well as threatening his life.

    I asked ward staff: “If you had that level of drugs, gangrene and MRSA infection, a brain injury, dementia and was immediately post operative, would you be allowed to make clinical decisions?” You can believe that the answer was “of course not!” The personnel involved still did not seem to get it that a patient in that combined state does not have the mental capacity, under the 2005 act, to make decisions for themselves. It was crazy to only act in his best interest after he had “died” and so be able to provide the drugs that he had declined. (It is his usual behavior to wave away pain meds until he really feels the pain.) That behaviour almost killed him because he does not always get it (even when “well”) that some of his meds are not just pain killers that he can take later.

    It should be noted that my father in law does not have a DNR (Do Not Resuscitate) on file and even when in excruciating pain he would answer that he did not want to die.

    Later, and as the result of the complete failure of his re-amputation, he was sent home in less than five hours from the ward, after being admitted to the ED overnight. We arrived ASAP upon being told…….. He was already back in his nursing home. We were not able to influence his treatment in a best interest capacity because they did not want the family intervening and so blocking the bed….. Not when he had a cosy nursing home to go back to.

    It is not co-incidental that the hospital’s spokesperson gave a TV news interview about “initiatives” to stop bed blocking by elderly patients just two days later.

    His thigh bone protruded from the destroyed stump with a massive infection that was leading to fatal sepsis. (His distraught and very angry GP’s words). It was almost as if someone had just cut all of the skin and muscle from the end of his thigh and exposed the muscle and bone.

    When questioned, the CCG sent me a letter stating “The doctors believed that his illness was stable enough to send him home.” And that, “The nursing home facilities were sufficient to provide the care that he needed”. They would not carry out a CHC assessment. They did not carry out the Checklist at the point of discharge.

    He was sent to his nursing home to pay for his own very obvious healthcare needs. Those that usually gave him his dinner or fluffed his pillows now had to keep manage his disease state, his wounds and the infections, to keep him alive. (A nurse was available). (Several weeks later he was readmitted for further amputation surgery.)

    Once again I asked ward staff. “If you were in that much pain, suffering that level of sepsis, with a brain injury and dementia would you be allowed to make clinical decisions?” Once again “Of course not”. No one seemed to be able to see the similarity of allowing him to make his own clinical decisions and then acting upon a very confused patient’s, only guessed-at wishes.

    I later spoke with a (junior?) surgeon who stated “I have only been on the ward for a short while and I know nothing of the Mental Capacity Act.”

    So yes Angela is correct….. The NHS and the LA do not really have a handle on the Mental Capacity Act. And if I can read it and research external information and understand its correct application, why is it so difficult for those who are paid to know this stuff to actually learn about it?

  6. Jullie 5 years ago

    Loved one has diagnosis of dementia, cannot make decisions, no capacity. We have all power of attorney (PoA) in place. A social worker (SW) went to care home and carried out an assessment without telling us. This was prior to a CHC meeting, SW had never had prior contact with loved one before.

    After a CHC refusal and at that same meeting several days later had decided that there was a social care need and a financial assessment was needed. Apologised verbally that she hadn’t told us, said it was alright as loved one was asleep most of the time. We have no idea what took place, we have no idea if capacity was established, we have not been supplied with notes as requested.

    By co-incidence – or not – loved one had nmade a remark to me out of the blue the next day, has no idea of what is saying, soundbites emerge form the mind – no insult meant to loved one but does a parrot understand “pretty Polly”, it just repeats what it hears. Loved one asks if I have got “the money” together, no idea why money is needed. Later says “this is a nice room, can have a telephone installed” – loved one cannot find emergency button or use tv remote control. How would loved one know that the room has phone point?

    I wonder what else goes on without our knowledge, loved one gets very distressed and needs gentle handling, is aware that something is going on but can’t sort it out. This is cruel.

    • Angela Sherman 5 years ago

      I can empathise with your sentiments, Jullie. The reports we receive from families indicates that a lot goes on behind their backs, and it can be difficult to ascertain what exactly has been done – let alone whether it has been done properly.

  7. wendy main 5 years ago

    My Mum had a Mental Capacity Act assessment following a fall at home. Mum had a diagnosis of mixed dementia 4 years prior to the fall.
    MCA assessment was carried out by a Consultant Geriotrician in an A and E department. From the MCA asset: Mum was identified not to have capacity to make decisions.
    Geriotrician wanted Mum to stay in hospital for observation but after many hours at A and E and the Geriotrician to decide what to do he discharged Mum because his exact words were “your mother needs to stay in hospital she does not have capacity BUT if I keep her in I will have to fill in a lot of forms”
    so even Geriotricians don’t know what to do with outcome of MCA assmt: so unprofessional.
    Very let down daughter of her Mother.

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