Dementia patients don’t feel pain…

I’m in pain today and not functioning or paddling as well as usual so am posting this link to an article about friends of ours in Scotland. It is a very interesting read, and it still horrifies me to think pain has been ignored for so long in the care of people with dementia.

How dementia patients’ rages may have a very surprising cause: Carers often struggle with loved ones’ outbursts. But for Ann there’s been a major breakthrough

  • Ann Pascoe, 67, says her husband Andrew had always been mild-mannered
  • Andrew, 65, from from Helmsdale, was then diagnosed with dementia
  • Would sometimes get very agitated – and even throw things

By Lucy Elkins PUBLISHED: 11 February 2014

DementiaAnn Pascoe’s husband Andrew had always been a gentle, mild-mannered man. So when he was diagnosed with dementia seven years ago, she expected him  to be forgetful and become more dependent – what she was not ready for  were his aggressive outbursts.

Andrew, 65, a former naval engineer, had always had a caring nature. ‘Yet after he developed dementia, from time to time he would get very agitated –  sometimes he would throw things – for no  reason,’ says Ann, 67, a  businesswomen.

‘He might  come in from the garden and just suddenly shout: “I’m not doing it any  more,” and slam the door and storm up upstairs.

‘It was incredibly upsetting and I was permanently walking on eggshells but thought that this must just be part of the dementia.

‘I was getting to the stage where I felt I couldn’t cope any more.’

Then, last August, she discovered there was more to these outbursts than she  realised. Andrew, who tries to lead as independent a life as possible,  had fainted at the bus stop in the village near where the couple live in Helmsdale, Scotland.

An  ambulance was called and a doctor found Ann’s details in Andrew’s wallet and called her. ‘He said Andrew seemed very confused and was mentioning something about pain but wasn’t making much sense,’ she recalls.

In fact, Andrew had been diagnosed with neuropathic (nerve) pain in his  legs two years before. ‘He’d tried a variety of painkillers and said  they didn’t work, but now I wonder if he took them,’ says Ann.

‘He had said he was hurting from time to time but as he had not been very specific I had not taken it that seriously.’

The doctor suggested Ann keep a ‘pain diary’ for her husband for two weeks, getting him to rate his discomfort on a scale of one to ten at various  times of the day. ‘When he was sitting down he said it was a two out of  ten; when he walked in the garden it was as high as a nine,’ she says.

Ann Pascoe from Helmsdale, Scottish Highlands is now dealing with her husbands’s dementia

Analysing the diary, the doctor realised Andrew was in considerable pain a lot of the time and prescribed him Gabapentin, an epilepsy drug that  interrupts the transmission of pain signals in the brain.

This time Ann watched her husband like a hawk to ensure he took it and, sure enough, the aggressive outbursts all but stopped. ‘Now I realise that  his agitation was not the dementia – it was a result of his pain – he  just didn’t know how to tell me,’ she says.

Andrew told Ann he often couldn’t find the words to explain many everyday events – including his levels of pain.

The couple’s story highlights an extraordinary new understanding of the  behaviour of dementia patients – and could help transform their, and  their carers’, lives.

For a growing body of research has found that many of the symptoms often  written off as ‘just a part of dementia’ – agitation, aggression,  withdrawal or repeatedly asking for attention – are actually untreated  pain.

Indeed, pain is  the biggest cause of such symptoms – including even language breakdown  –  according to a recent review in the journal Clinical Intervention In  Ageing.

However, the  authors concluded that while pain is often the underlying cause of some  behaviour, patients may be given ‘inappropriate’ sedating medication  instead.

It’s not that  dementia causes pain, but the 800,000 people in this country with the  disease tend to be older and therefore more prone to aches and pains.  Many patients lose the ability to talk, but even those who are coherent  may struggle to find the right words to describe their discomfort.

The problem is that not all health professionals or carers are yet aware of this, so they dismiss changes to behaviour such as becoming agitated as part of dementia, says Pat Schofield, professor of nursing at the  University of Greenwich.

‘Historically, we used to believe that people with dementia do not feel pain because  of the effects that their illness has on the brain but in recent years  we realised that is not so,’ she adds. ‘They are just as likely to  suffer with pain but they cannot express it.’

‘Think how frustrating that must be – you can’t find the words to tell  someone, “I’m in agony”, or, “This is hurting”,’ says Prof Schofield.

Scientists from King’s College London and Norway found that when they gave daily  pain treatment to patients with ‘significant behavioural disturbance’,  their agitation was ‘severely reduced’.

Their study, published in the British Medical Journal in 2011, said that  properly treating pain could reduce ‘unnecessary prescriptions for  psychotropic drugs’ – drugs such as antipsychotics.

‘Study found three-quarters of dementia patients in hospital displayed agitation or aggression and that ‘staff are still using sedative and neuroleptic drugs’

For years, agitated or aggressive dementia patients have been given  antipsychotics, which act on the brain and sedates them. In 2009, a  government-funded report found that 180,000 dementia patients in England were on antipsychotics, yet it estimated as few as 36,000 were getting  any benefit.

Furthermore, the drugs carry a risk of significant side-effects – the report  suggested they were linked to 1,620 strokes a year and an additional  1,800 deaths.

‘In the past, there was a tendency to think, “Oh dear, this patient is agitated, we  better give them a chemical cosh,” rather than think, “What could be  causing this?”’ says London GP Dr Sarah Jarvis, who contributed to a  recent report on dementia and pain.

‘Then there were anxieties about the drugs’ side-effects, and we are using them less and less.’

However, prescriptions are still too high. A two-year study completed last April by University College London and funded by the Alzheimer’s Society  found that three-quarters of dementia patients in hospital displayed  agitation or aggression and that ‘staff are  still using sedative and  neuroleptic drugs to manage these’. The problem, suggests Dr Jarvis, is  that while ‘the message has got across that we should be prescribing  fewer antipsychotics, still health professionals are not necessarily  thinking of pain as a cause [for challenging behaviour]’.

Many dementia patients end up in care homes. Dr Jarvis says she often finds  staff are unaware of the link between agitation and pain.

‘I’ve lost count of the number of times that I have had a dementia patient  not on antipsychotics and the care home will say to me: “But they seem  to become agitated.”

‘I will suggest pain as a cause and they will say: “No, it can’t be – they aren’t agitated all the time.” But the point is, pain does tend to come and go.’

A recent report  by Napp Pharmaceuticals found that a third of independent care and  residential homes had not reduced their antipsychotic use.

Furthermore, nearly 40 per cent said fewer than a quarter of their dementia patients suffer with pain, yet surveys (such as one in Clinical Intervention In  Ageing) have found 50 per cent of dementia patients suffer with regular  pain and that the figure will be higher for those in care or residential homes.

‘A better awareness of pain could transform the care of dementia patients,’ says Dr  Jarvis.  Yet often carers like Ann have to deal with this challenging  behaviour unaware that their loved one’s outburst might be easily cured  with pain medication.

‘Every day I see carers who are at the end of their tether and come in and ask for tranquilisers to help with their loved ones behaviour,’ says Dr  Jarvis.

‘But we have to say to them first: “We need to try and find out what is causing this behaviour.” ’ Now there is a move, backed by the Alzheimer’s Society and other  campaigners, to better identify and treat people with dementia who are  in pain.

‘All too  often people with dementia suffering from unrecognised pain are  mistakenly deemed to be aggressive, uncooperative or withdrawn,’ says Dr Alison Cook, of the Alzheimer’s Society.

‘It is vitally important that care professionals have the tools and training to meet the complex needs of people with dementia.’

It’s a move welcomed by Ann.

‘We carers need to be told what to look for, what to expect,’ she says. ‘I  am sure there will have been people who will have been caring for loved  ones who will have thought they can’t cope and sent their loved one off  to a home when actually had the pain been treated they could have  carried on.

‘I’m relieved  not just that Andrew is less agitated but also that he has a better  quality of life. ‘I plan to care for him for the duration of his  illness.

‘A year ago, I was thinking: “I hate this.” Now I feel as if our life is back on track.’

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10 thoughts on “Dementia patients don’t feel pain…

  1. I’m so thrilled to read this – not in the usual sense of thrill, but I have nursed for years and have kept pain charts for my dear residents/patients – only to have many other staff (and doctors) dismiss my clearly documented links between ‘bad behaviour’ (outbursts of all types) and what I thought was pain…I have photocopies where I have written in Dr’s books – asking for them to review my charts and prescribe something – only for them to think I was asking for the patient to be medicated to the point of paralysis (why do they do that with your words???). I knew that someone calling out all the time needed something/someone and have endeavoured to nurse ‘properly’ – giving my time and years of work nursing, to observe and document and give comfort by presence – regardless of the mounting levels of work not done (you know, the staying back for hours to complete nursing care plans, just so I could give the patient some old fashioned nursing!!)

    This is just wonderful news. I will have to print this out at work and see if we can get all the drs to read and sign! Plus then bring in some info on pain management, so they know it’s not about medicating someone to the eyeballs, but using appropriate medication.

    I’m also one that is concerned about behaviour post the introduction of different types of analgesic patches – the number of people who are allergic or have reactions to the S8 medications – I’m sure this happens with the patches too but, once again, they’re unable to say how they feel. An ‘old-school-type’ nurse (RN, EN, AIN or home) can often sense something is not right by intuition or common sense…

    I’ve also been concerned about the use of the plastic ‘nappies’ – I’ve seen, since their introduction (and have been nursing through all these changes), a huge increase in skin conditions which would have been ascribed to some sort of sensitivity but, in the case of dementia patients and incontinence pads/aides, it seems to be swept under the carpet and, at night, I see some of them as poor wretches, scratching and scratching – only to have the bandaid treatments of steroid cream/other cream being prescribed and the cycle begins again.

    I do hope this makes sense having worked a number of nights in a row and not having had much sleep. I’m off to bed now, it’s only 0300!

    All best, my dear friends


    • Thanks for sharing your concerns and professional stories Shelley… as you say, the use of the S8 patches, and ‘plastic’ nappies have brought with them a number of other difficult issues, especially for people with dementia who still get little say of they have a voice, or cannot speak for themselves. It’s great to know this article was so helpful too. ps get some sleep! xx


  2. Hope you’re feeling better today Kate.

    As you know, I have a lot of different types of serious pain 24/7, and then also chronic hunger and thirst 24/7 …… I know from what I was like before treatment improved me that it’s difficult – very difficult – being chronically hungry and having no memory or coping ability. Very difficult. And treatment is OK if the pain is treatable – I have 3 different pain types none of which are treatable at the moment.

    I just hope that in the future I don’t get re-diagnosed with another type of dementia (the one I had is not progressing because of treatment) because it scares the hell out of me. I’ll just have to face that if / when it comes and take matters into my own hands if you know what I mean.

    Have a good weekend Kate 🙂


  3. So sorry that you are in pain and hope it is just a passing problem. What an interesting article, Let’s hope it heralds a breakthrough in the way people with dementia are treated.


    • Thanks Vanessa… and yes, the topic of pain has been on the agenda for a while now, and thankfully the tide is turning regarding people with dementia and their pain being firstly, acknowledged as possible (!!), and now treated.


  4. Dear Kate – I hope that by now you are free of pain. Understanding and recognising pain in people who are not able to verbalise this has always been a concern of mine.
    In 2002 I was trained in Dementia Care Mapping and used this tool extensively to identify pain. It worked, but I often found the care staff, and even sometimes the medics were unwilling to accept this. I know that nurses are trained to recognise pain, but it is my experience that in Care Homes, they are so busy that they simply do not have the time necessary to make observations of their residents for a prolonged period. Rushing into a room, asking the person if they have an pain, or observing for a few minutes simply is not thorough enough. Often there is no pain while lying still, but any movement or handling could cause pain – too late, nurse has left the room. Or it could be the reverse – ok on movement, but pain if left in one position.
    Sadly very few Homes use DCM …….. Too expensive!
    Take care, look after Kate.


    • Thanks for the reminder of the DCM, and for your concern. Unfortunately, chronic pain is what I live with, exacerbated by things like falls and new injuries… such is life for many people all around the world, and so my motto ‘Toughen up Princess’ gets a very regular workout!!!


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