Aileen Williams at RAAFA

Assessing pain in people living with dementia can be a challenging task, as they may not be able to accurately communicate their pain due to cognitive and communication impairments. This poses various challenges to caregivers in ensuring reliable pain assessment outputs that remain consistent, regardless of the assessor. In this article, we highlight some of the challenges involved in assessing pain among individuals living with cognitive impairments, including dementia.

Main Barriers to Assessing Pain in Dementia

Communication Difficulties

People with dementia may experience communication difficulties that vary depending on the severity of their condition, meaning it can be difficult to tell the caregivers the location, intensity, or quality of their pain. They may also have difficulty remembering when their pain started, how it began, and how long they have been experiencing the pain.

Cognitive Impairment

Dementia can affect a person’s ability to understand and respond to questions, which can make it difficult for healthcare providers to assess pain. Additionally, people with dementia may have difficulty recognising and interpreting pain-related cues and may not be able to express their pain in a way that healthcare providers can understand. This can also cause other distress response behaviours which may be inappropriately assumed to be a symptom of dementia itself, rather than a means of communicating their discomfort or pain.

Behavioural and Psychological Symptoms

People with dementia may exhibit behavioural and psychological symptoms, such as agitation, restlessness, or aggression, which can be associated with pain. However, these symptoms can also be caused by other factors, such as environmental or social triggers, which can make it difficult to determine whether the pain is the underlying cause. It is therefore important to determine whether or not pain is present when these behaviours are observed to ascertain the most appropriate care pathway for that individual.

Inaccurate Reporting

Family members or caregivers may report on behalf of the person with dementia, but their reports may not always be accurate due to their own biases or misunderstandings of the person’s pain experience. This issue is also exacerbated when there is a high turnover of staff or a resident is being cared for by multiple caregivers at any one time.

Ineffective Treatment

Due to the challenges in assessing pain, people with dementia may be at risk of under-treatment for their pain, which can have negative impacts on their quality of life and overall health. Conversely, a person living with dementia is also vulnerable to being overprescribed or inappropriately prescribed medications such as antipsychotics or benzodiazepines which may not be required and are a byproduct of ineffective pain assessments.

To overcome these challenges, healthcare providers may use a combination of tools and techniques, such as observational pain scales, behavioural assessments, and pain diaries, to better understand and manage pain in people with dementia. Additionally, involving family members and caregivers in the assessment process can provide valuable insights into the person’s pain experience and improve the accuracy of pain reporting.

Managing Pain, Improving lives – Real Story

Larissa McIntyre at Anglicare

Larissa McIntyre has been working in aged care for two decades and specialising in palliative care, where her passion lies, since 2010. Today, as a Nurse Practitioner and Head of Clinical Services for Anglicare Aged Care & Community Services, her role involves reviews of clinical practice, including management of pain, across 23 facilities, as well as meeting with residents’ families to talk about end-of-life planning.

“99.5% of our residents will die either with us or in a hospital, so end-of-life care is really, really important,” Larissa says. “We need to get it right the first time because we don’t get a second chance. Providing that excellence in care as people are dying and supporting their families is critical.”

The majority of residents in the facilities Larissa oversees are living with dementia or life-limiting illnesses, and for many, this means dealing with chronic pain. Although completely eliminating pain may not be possible, ensuring comfort and dignity is paramount for residents and their loved ones.

“For these people, you can’t eradicate chronic pain but you can make them more comfortable and give them a better quality of life,” Larissa says. “Everybody I know who works in palliative care has that passion for trying to make someone’s last few days, weeks, months or sometimes years better.”

“Most family members say ‘I just don’t want Mum or Dad to be in pain’. The research tells us that’s the biggest fear people have about dying – that they will be in pain and the pain won’t be managed.”

Supporting Quality end-of-life Care

Anglicare’s management team made the decision to implement PainChek® in 2021 following a review of the organisation’s pain management processes. They were previously using a combination of tools, including the Abbey Pain Scale, but found that these methods didn’t provide the consistency and objectivity needed to support best-practice pain management.

“The primary starting point [in effective pain management] always has to be about the assessment. What type of pain is it? How severe is this pain? How long has that pain been there? How does it interrupt your day-to-day life? For people who are living with dementia, it’s really difficult to do that kind of pain assessment. That’s where PainChek® has been quite revolutionary,” Larissa says.

Currently, Anglicare’s clinical care team conducts around 3,800 pain assessments a month using PainChek®, and each month this figure keeps growing. Larissa has experienced first-hand how PainChek® enables more objective pain assessment, and in turn, improved pain management.

“I had one resident with dementia who hated getting her back and hair wet – she would scream and thrash,” Larissa shares. “I told the team to do a pain assessment using PainChek® and they looked at me like I had two heads. But guess what? Her pain score was severe. All people could see was the behaviour she was demonstrating but not the cause. Based on that assessment, I was able to speak to her daughter and put the resident on pain relief, and within an hour she was quite comfortable and not distressed.”

PainChek® not only facilitates best-practice end-of-life care for Anglicare’s residents, but also supports ongoing compliance with the Aged Care Quality and Safety Commission’s Quality Standards.

“The validity of the PainChek® is so significant that when I rewrote the pain policy and procedure, I included a guideline to use it as our primary assessment tool.”

Aged Care Today

The aged care sector faces various challenges globally. The first to note is that the global population is continuing to age, resulting in the need for more aged care as medicine and healthcare treatments advance. As the need for care increases, the issues that were once manageable, become greater and the toll on the sector widens.

Staff Shortages

There is a shortage of skilled aged care workers in many countries, which can make it difficult for providers to deliver quality care. This shortage is expected to worsen in the coming years, as the demand for aged care services continues to grow.

Funding Issues

Aged care can be expensive, and many people are unable to afford the services they need. Governments and providers must balance the need for affordable care with the need to maintain high standards of care.

Complex Care Needs

Many older adults have complex care needs that require specialized care and attention. Providers must have the resources and expertise to deliver this care, which can be challenging.

Technology Adoption

The aged care sector has been slow to adopt new technologies that could improve care delivery and efficiency. This can make it difficult for providers to keep up with changing patient needs and expectations.

Quality of Care

There have been concerns about the quality of care provided in some aged care facilities, including issues with neglect, abuse, and mistreatment. This has led to calls for greater regulation and oversight of the sector.

Importance of Pain Management

Assessing and managing pain is important for everyone, in fact, it is widely accepted as a human right. As we have already discussed, assessing pain for those with dementia brings its own unique challenges as the most effective method, self-reporting, is not a reliable method.

Now we will delve into why it is important to manage this pain effectively for people with dementia, beyond the context of comfort.

Dementia & Antipsychotic Medication

Approximately 90% of people living with dementia experience behavioural and psychological symptoms (BPSD) such as aggression, agitation, loss of inhibitions and psychosis. Those people living with BPSD symptoms are commonly prescribed antipsychotic medications, often inappropriately. The prescription of antipsychotics should be used as minimally as possible due to the potential side effects they bring, such as the increased risk of strokes. The other issue with prescribing antipsychotics is that, although they may reduce the occurrence of BPSD, they do not address the root causes of these episodes. A Department of Health study found that of 180,000 antipsychotic prescriptions for people living with dementia prescribed in the UK, close to 80% (i.e. 140,000) were inappropriate. Reducing the inappropriate prescribing of antipsychotics is, of course, a huge priority. One reason for the inappropriate prescribing of antipsychotics is pain related. For instance, a resident displaying BPSD symptoms may be prescribed antipsychotics, when in fact the cause of these symptoms is pain related and this can easily be overlooked when pain assessments are not effective. If you are not assessing pain correctly or not assessing pain at all, you could be overlooking the root cause of the issue.

Although there are several ways we can reduce the inappropriate prescribing of these drugs, effectively assessing pain provides a good insight into whether the behaviours are pain related or not. Ruling out pain, through pain assessment and management, is routinely recommended as an intervention when addressing BPSD.

Pain vs Immunity

Pain can often go untreated for people with dementia for several reasons; they may not be displaying usual pain symptoms or the way they are expressing their pain may be mistaken for behavioural issues. We are beginning to understand that chronic or persistent pain has negative effects on the immune system, and therefore differentiating pain and behaviours is incredibly important. A study from McGill University found that chronic pain can reprogram how DNA is marked in immune cells, called T cells. Whilst it is still unclear on the magnitude of these changes, we do know that the T cells play an important role in fighting off infection. In conjunction with this, we also know that chronic pain triggers a stress response, and if the source of this pain goes untreated, it can lead to long-term stress in the body. This stress can result in increased levels of cortisol in the body which relates to the decline in the immune system.

What is PainChek®?

PainChek is a medical device and software application designed to assess and monitor pain levels in people who are unable to communicate their pain effectively. It uses artificial intelligence and facial recognition technology to detect and quantify pain in real-time by analysing micro facial expressions, which indicate pain.

The PainChek® app is used on a mobile device, such as a tablet or smartphone, and is intended to be used by healthcare professionals, caregivers, and family members to assess pain in people with communication difficulties, such as those with dementia, intellectual disabilities, or non-verbal individuals. The app provides a pain score and alerts healthcare professionals to potential pain-related issues, enabling them to take appropriate action.

PainChek® has been validated in clinical studies and is approved for use in several countries, including Australia, the UK, and parts of Europe. It has received various awards and recognitions for its innovative use of technology in the assessment and management of pain.

Don't miss out!
Sign up to receive the latest news and updates from PainChek
Invalid email address