The National Institutes of Health estimates that approximately 80% of people living in care homes experienced pain in the previous 30 days. That\u2019s 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.<\/p>\n
Why should we care?\u00a0\u00a0<\/strong><\/h5>\nFailure to treat and manage pain appropriately is considered an unethical practice and a breach of human rights. Yes, it\u2019s that serious. I don\u2019t think anyone would want to spend their final years, months, weeks or days in pain. It\u2019s 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.<\/p>\n
What are the problems?\u00a0\u00a0<\/strong><\/h5>\nUnfortunately, 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 \u201cproblematic\u201d or \u201cchallenging\u201d. Mislabelling pain behaviour as \u201cproblematic\u201d or \u201cchallenging\u201d can often lead to inappropriate treatment, which includes unjustified use of chemical restraint, such as psychotropic agents (for example antidepressants, hallucinogens, antipsychotics, benzodiazepines),\u00a0to sedate these undesired \u201cchallenging\u201d behaviours. Approximately 88% of people living with dementia in UK care homes have been chemically restrained unnecessarily to minimise \u2018challenging\u2019 behaviours, and I\u2019m sure I don\u2019t need to tell you that is a horrifying statistic.<\/p>\n
Research shows us that \u201cchallenging\u201d 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\u2019re not able to communicate or express their need, or able to understand what\u2019s happening around them. The behaviours associated with confusion and frustration can get misinterpreted as aggressive, and so the negative and repetitive spiral begins.<\/p>\n
Using chemical restraint to subdue these challenging behaviours not only exacerbates the disease and may precipitate death but is also classed as \u2018elder abuse\u2019.<\/p>\n
What can we do?\u00a0\u00a0<\/strong><\/h5>\nThe 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\u2019ve 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 \u201cpain is what the patient says it is<\/em>\u201d, which of course makes it difficult when the patient (in this case, a person living with dementia), is unable to verbalise their pain.<\/p>\nIf 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\u2026), 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.<\/p>\n
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 \u2013 Facial Action Coding System) and smart automation to facilitate pain assessment at the point of care. If you\u2019re interested to read about the validation process, here\u2019s a link to the published and peer-reviewed article:\u00a0https:\/\/bmcgeriatr.biomedcentral.com\/articles\/10.1186\/s12877-021-02280-0<\/a><\/p>\nWhile there\u2019s 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.<\/p>\n\n\n
\n\n\n\nAbout the author<\/strong><\/h5>\n\n\n\nDr Ivana Babicova (pronouns: she\/her)<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
Her other research interests include investigating implicit and explicit biases, secondary traumatic stress and general wellbeing.<\/p>\n\n\n\n
Twitter: @IvanaBabicova<\/a><\/p>\n\n\n\n
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 \u201cproblematic\u201d or \u201cchallenging\u201d. Mislabelling pain behaviour as \u201cproblematic\u201d or \u201cchallenging\u201d can often lead to inappropriate treatment, which includes unjustified use of chemical restraint, such as psychotropic agents (for example antidepressants, hallucinogens, antipsychotics, benzodiazepines),\u00a0to sedate these undesired \u201cchallenging\u201d behaviours. Approximately 88% of people living with dementia in UK care homes have been chemically restrained unnecessarily to minimise \u2018challenging\u2019 behaviours, and I\u2019m sure I don\u2019t need to tell you that is a horrifying statistic.<\/p>\n
Research shows us that \u201cchallenging\u201d 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\u2019re not able to communicate or express their need, or able to understand what\u2019s happening around them. The behaviours associated with confusion and frustration can get misinterpreted as aggressive, and so the negative and repetitive spiral begins.<\/p>\n
Using chemical restraint to subdue these challenging behaviours not only exacerbates the disease and may precipitate death but is also classed as \u2018elder abuse\u2019.<\/p>\n
What can we do?\u00a0\u00a0<\/strong><\/h5>\nThe 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\u2019ve 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 \u201cpain is what the patient says it is<\/em>\u201d, which of course makes it difficult when the patient (in this case, a person living with dementia), is unable to verbalise their pain.<\/p>\nIf 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\u2026), 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.<\/p>\n
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 \u2013 Facial Action Coding System) and smart automation to facilitate pain assessment at the point of care. If you\u2019re interested to read about the validation process, here\u2019s a link to the published and peer-reviewed article:\u00a0https:\/\/bmcgeriatr.biomedcentral.com\/articles\/10.1186\/s12877-021-02280-0<\/a><\/p>\nWhile there\u2019s 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.<\/p>\n\n\n
\n\n\n\nAbout the author<\/strong><\/h5>\n\n\n\nDr Ivana Babicova (pronouns: she\/her)<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
Her other research interests include investigating implicit and explicit biases, secondary traumatic stress and general wellbeing.<\/p>\n\n\n\n
Twitter: @IvanaBabicova<\/a><\/p>\n\n\n\n
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\u2026), 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.<\/p>\n
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 \u2013 Facial Action Coding System) and smart automation to facilitate pain assessment at the point of care. If you\u2019re interested to read about the validation process, here\u2019s a link to the published and peer-reviewed article:\u00a0https:\/\/bmcgeriatr.biomedcentral.com\/articles\/10.1186\/s12877-021-02280-0<\/a><\/p>\n While there\u2019s 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.<\/p>\n\n\n Dr Ivana Babicova (pronouns: she\/her)<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Her other research interests include investigating implicit and explicit biases, secondary traumatic stress and general wellbeing.<\/p>\n\n\n\n Twitter: @IvanaBabicova<\/a><\/p>\n\n\n\nAbout the author<\/strong><\/h5>\n\n\n\n
![\"Ivana](\"https:\/\/wp.lancs.ac.uk\/public-discourses-of-dementia\/files\/2023\/02\/IvanaBabicova_photo-768x1024.jpg\")
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