For most of us, physical pain is not a pleasurable experience. Especially if the pain is not desired, such as getting a cluster headache, stubbing a toe on the corner of furniture, tearing a muscle while working out, or more extreme pain such as cancer pain, fractures, burns, nerve damage, not to mention psychological or emotional pain (that’s a whole another topic).
We all know what pain feels like – distressing, annoying and irritating. We also know that there are ways to ease it, depending on the type and location of pain. Headache? Water and some paracetamol will likely help. Muscular aches and pains? Maybe a hot bath and anti-inflammatory such as Ibuprofen should do. Post-operative pains? Intravenous opioids such as fentanyl, morphine, oxycodone, tramadol will sort it. But what if these pain management methods don’t work? Well, then we tend to tell our GPs and find another short term or long-term solution. You see, that’s the key. Communication. But what if we experience difficulties communicating or verbalising our pain? This is where we can start to see issues.
It is widely documented that communication skills can be impaired by dementia. This impairment in communication skills can be progressive, and occurs because the key language centres, called Broca’s Area and Wernicke’s Area, located in the left hemisphere of the brain, deteriorate. This can make it challenging for people living with dementia who also experience such difficulties with communication to articulate the nature and severity of their pain through language.
What do the statistics show?
The National Institutes of Health estimates that approximately 80% of people living in care homes experienced pain in the previous 30 days. That’s a shocking statistic, given that pain is not a natural part of aging. Untreated and poorly managed pain, which is often the case in people living with dementia, is associated with substantially reduced independence and mobility, increase in falls, increase in depressive and anxiety symptoms and even premature death.
Why should we care?
Failure to treat and manage pain appropriately is considered an unethical practice and a breach of human rights. Yes, it’s that serious. I don’t think anyone would want to spend their final years, months, weeks or days in pain. It’s important that we effectively recognise, assess, treat, and manage pain in those living with dementia, to ensure that they have good quality of life and pass away with dignity and in comfort.
What are the problems?
Unfortunately, because people living with dementia can experience difficulties communicating their pain through language, the behaviours indicative of pain which they exhibit can be mislabelled as “problematic” or “challenging”. Mislabelling pain behaviour as “problematic” or “challenging” can often lead to inappropriate treatment, which includes unjustified use of chemical restraint, such as psychotropic agents (for example antidepressants, hallucinogens, antipsychotics, benzodiazepines), to sedate these undesired “challenging” behaviours. Approximately 88% of people living with dementia in UK care homes have been chemically restrained unnecessarily to minimise ‘challenging’ behaviours, and I’m sure I don’t need to tell you that is a horrifying statistic.
Research shows us that “challenging” behaviours have previously been linked to inadequate pain detection, assessment, and management. This is also where the damaging stigma that people with dementia are aggressive comes from. Often, people living with dementia are in pain, confused, frustrated or even frightened, because they’re not able to communicate or express their need, or able to understand what’s happening around them. The behaviours associated with confusion and frustration can get misinterpreted as aggressive, and so the negative and repetitive spiral begins.
Using chemical restraint to subdue these challenging behaviours not only exacerbates the disease and may precipitate death but is also classed as ‘elder abuse’.
What can we do?
The answer to this is not straightforward. It is not fair to blame this on anyone, especially not on nurses or other healthcare professionals who are overworked, understaffed, and have severe time constraints. The gold standard of pain assessment is a self-report measure. If you’ve ever been to see a health professional about acute or chronic pain, they usually ask you to rate your pain on a scale of 0-10, where 0 means no pain at all and 10 means the worst possible pain you can imagine. Well, believe it or not, this is a pretty good way to gauge how to proceed with pain management, because pain is very subjective due to past experiences and individual pain threshold. All nurses during their training will learn that “pain is what the patient says it is”, which of course makes it difficult when the patient (in this case, a person living with dementia), is unable to verbalise their pain.
If we are not able to ask about pain levels, we use observational pain assessment tools instead to help us determine the presence and severity of pain in those living with dementia. There are at least 30 observational pain assessment tools, designed to aid nurses (or other assessors, such as allied health professionals, GPs, and pain specialists…), to determine whether someone is in pain and how severe that pain is. This is determined by considering multiple pain domains, including exhibition of micro facial expressions indicative of pain, vocalisation, changes to movement, changes to behaviour, activity and physiological changes too.
I spent most of my PhD working with researchers who have developed PainChek, a digital version of an observational pain assessment tool, that is quick, objective and mitigates human error. PainChek is an Australian-based health technology company whose mission is to give a voice to people who cannot reliably verbalise their pain, including those with advanced dementia. It utilises AI (Artificial Intelligence using FACS – Facial Action Coding System) and smart automation to facilitate pain assessment at the point of care. If you’re interested to read about the validation process, here’s a link to the published and peer-reviewed article: https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-021-02280-0
While there’s a lot of hope and excitement about how tools like PainChek can more reliably and quickly detect the presence and severity of pain, it is designed for nurses and health professionals. So, what can we, relatives, friends, and informal carers of people with dementia who have difficulties with communication do in the meantime? We can listen and watch out for changes to the behaviour of our loved ones with dementia, and team up with nurses and health professionals, to initiate a collaborative process of care, talk about changes that might indicate pain and consequently aim for the best outcome and highest possible quality of life.
About the author
Dr Ivana Babicova (pronouns: she/her)
Ivana is a Lecturer in Psychology at Birmingham City University. Her key research interests are pain in dementia, specifically improving ways to detect presence and severity of pain in those who cannot verbalise it, such as people with moderate to late stages of dementia.
Her other research interests include investigating implicit and explicit biases, secondary traumatic stress and general wellbeing.
Twitter: @IvanaBabicova
Email: ivana.babicova@bcu.ac.uk
Website: https://www.bcu.ac.uk/social-sciences/about-us/staff/psychology/ivana-babicova
