KEY POINTS
- Not every new or unexplained behavioural change reflects progression of dementia. Pain and other treatable medical conditions can present in similar ways.
- Pain in dementia isn’t always expressed in words. Changes in movement, mood, behaviour or daily routines may become the person's most important way of communicating discomfort.
- Families and caregivers often notice changes first. Recognising what has changed from the person's usual behaviour can provide valuable clues and help guide earlier assessment.
Helping your loved one get dressed has become part of the daily routine. Then one morning, they suddenly push your hand away and become distressed. For families caring for someone living with dementia, it’s easy to wonder whether the condition is getting worse. Sometimes, however, that change may be one way a person is communicating pain.
Dementia is widely recognised for affecting memory, thinking and communication. Less well understood is how dementia changes the way pain is recognised and expressed. Pain is common among older adults, but recognising it becomes much more difficult once dementia affects communication. Pain doesn't disappear when words do. Dementia changes how pain is communicated, not whether it’s felt. As communication becomes more difficult, pain may instead be expressed through changes in behaviour, movement or mood.
Untreated pain affects more than physical comfort. It can reduce mobility, disrupt sleep, affect appetite, increase distress and make everyday care more challenging for the person living with dementia and those supporting them. Left unrecognised, it may also make behavioural changes more difficult to interpret, delaying the identification of potentially treatable causes.
Recognising pain is a shared process. Families and caregivers notice changes in day-to-day life, while healthcare professionals contribute clinical assessment, examination findings and, when appropriate, structured pain assessment tools. Bringing these observations together helps healthcare professionals determine whether pain or another treatable medical condition could be contributing to the changes.
When behaviour changes, it’s not always the dementia
Behavioural changes are often one of the first signs families and caregivers notice. While some reflect progression of dementia, others may have an underlying cause that can be assessed and treated. Pain is one possibility, but infections, constipation, medication side effects and other medical conditions can also contribute to these changes.
Because several conditions can present in similar ways, behavioural changes should be considered in the wider context of the person's overall health rather than being attributed to dementia alone. Identifying the underlying cause early may lead to treatment that improves comfort, mobility and day-to-day wellbeing.
Dr Mustafa Atee, whose pioneering work in technology-enabled pain assessment has helped improve pain assessment and management for people living with dementia, notes that pain is often under-recognised in this population because the gold standard of pain assessment, self-reporting, becomes progressively less reliable as cognition, memory, language, and communication abilities decline.
As a result, individuals with advanced dementia may be unable to clearly describe what they’re feeling. Instead, pain may be expressed through changes in behaviour, mood, or daily functioning rather than words. Detection can be further complicated by sensory impairments, speech difficulties, cultural factors, delirium, or other co-existing medical conditions, all of which may affect how pain is experienced, communicated, or interpreted.
Pain assessment is also more challenging when healthcare professionals use inappropriate assessment tools or lack sufficient time to conduct structured, regular assessments using validated dementia-specific pain assessment tools. Together, these factors can make pain significantly harder to recognise and manage, despite it being a common and potentially distressing experience for people living with dementia and their caregivers.
Pain doesn’t always look like pain
As dementia affects communication, describing pain becomes more difficult. Instead of telling someone what hurts, a person may express discomfort through changes in behaviour, movement or daily routines, such as:
These may include:
- Becoming unusually restless or pacing repeatedly
- Crying, groaning or calling out more often
- Resisting help with dressing, bathing or moving
- Eating or drinking less than usual
- Withdrawing from conversations or activities
- Becoming unusually irritable or aggressive
- Sleeping much more or much less than usual
- Appearing frightened or distressed without an obvious reason
These behaviours don’t automatically mean someone is in pain. They are, however, worth mentioning to the healthcare team, particularly if they’re new, persistent or different from the person’s usual behaviour.
Why pain is often missed
Pain assessment usually begins with a conversation. As dementia progresses, however, communication may become increasingly difficult, making pain harder to recognise through words alone. Healthcare professionals therefore use a structured assessment to determine whether pain or another medical condition could be contributing to the changes.
One of the biggest challenges in dementia care is that pain-related behaviours often overlap with neuropsychiatric symptoms and may be mistaken for manifestations of agitation, aggression, depression, sleep disturbances, or resistance to care.
A key way to differentiate the two is by looking for changes from the person's usual baseline, as well as considering the timing, context, and potential triggers. Pain is more likely to be contributing when behaviours are new, sudden, worsening, or consistently linked to activities such as movement, transfers, toileting, dressing, showering, wound care, or repositioning.
Because pain and neuropsychiatric symptoms frequently overlap, clinicians and caregivers should avoid assuming that a behaviour is simply a consequence of dementia. Instead, it’s important to regularly assess for common sources of pain, including arthritis, falls, fractures, pressure injuries, constipation, urinary retention, infections, dental problems, wounds, or poor positioning.
Given this overlap, distinguishing pain from neuropsychiatric symptoms requires structured and repeated and validated assessment rather than relying solely on clinical impression. Dementia-appropriate pain assessment tools, such as the Abbey Pain Scale and PainChek®, can be valuable. Clinicians and caregivers should observe the individual both at rest and during movement or personal care activities, while also seeking input from family members or familiar caregivers who may recognise the person's usual “pain signature” and behavioural patterns.
Another important clue is whether behaviours improve after comfort measures or treatment of potential pain sources. If agitation, distress, or resistance to care lessen following interventions such as repositioning, toileting, treatment of constipation, wound care, dental treatment, or appropriate pain management, pain is likely to have been a contributing factor.
This is particularly important because pain has been closely associated with neuropsychiatric symptoms in people living with dementia, and studies have shown that systematic pain treatment can reduce both agitation and the overall severity of behavioural symptoms1. These findings reinforce the importance of considering pain as a potential cause of behavioural change rather than attributing symptoms to dementia alone.
Look for patterns, not isolated moments
The most useful observations are often changes from the person's usual behaviour rather than one isolated event. Even subtle changes can become important when they persist, happen repeatedly or occur alongside other symptoms.
Have you noticed any of these changes?
- Walk less than they used to or hesitate before standing?
- Protect one side of their body or avoid certain movements?
- Grimace, wince or tense up during movement or personal care?
- Resist dressing or bathing after previously accepting help?
- Eat or drink less than usual?
- Wake up more often during the night or seem unusually restless?
- Withdraw from conversations or activities they previously enjoyed?
For changes that are mild or develop gradually, keeping brief notes over several days can help identify whether they persist or occur during particular activities, such as walking, dressing or eating. However, sudden, severe or rapidly worsening changes should be discussed with a healthcare professional promptly rather than observed over time.
According to Dr Atee, when verbal communication is limited or compromised in people living with dementia, the most clinically meaningful indicators of pain are behaviours that are specific, reproducible, linked to movement or in response to care, and different from the person's usual baseline.
Key signs include facial expressions, such as grimacing, frowning, wincing, or appearing sad or frightened. Clinicians may also look for more subtle facial changes, including tightened eyelids or opened mouth, particularly during mobility, transfers, or personal care activities.
Other important indicators include changes in body movement or posture, such as guarding or alterations in gait, as well as vocalisations including sighing, moaning, or groaning. Pain may also be reflected in changes to daily activities and routines, including eating habits, sleep patterns, or responses to personal care.
These signs are more likely to indicate pain when they occur alongside existing painful conditions, such as osteoarthritis, dental disease, wounds, or other acute and chronic sources of pain, and represent a noticeable change from the individual's usual behaviour.
How to describe what you’ve noticed
Families and caregivers often observe the person's day-to-day routines in ways that complement a healthcare professional's assessment. They may notice changes in movement, eating, sleep or behaviour that aren’t always apparent during a medical review.
When speaking with a healthcare professional, describing what you observed is often more helpful than describing what you think caused it. Rather than saying someone is "getting worse" or "seems different", explain what has changed from their usual behaviour.
It can help to describe:
What changed from their usual behaviour? For example, are they walking less, resisting personal care or eating less than usual?
When did you first notice it?
Does it happen during particular activities, such as walking, dressing, bathing or eating?
How often does it happen? Is it occasional or happening every day?
Does anything seem to make it better or worse?
Has anything changed recently, such as a fall, illness or new medication?
For example, saying "He has been walking much less over the past three days" or "She grimaces whenever she stands up" provides more useful information than simply saying "He's getting worse."
Clear, specific observations help healthcare professionals place these changes in context, consider possible causes and decide whether further assessment may be needed.
More than 30 observational pain assessment tools have been developed for people living with dementia who are unable to communicate their pain verbally, with many based on the American Geriatrics Society's Indicators of Persistent Pain in Older Adults2. Commonly used examples include the Abbey Pain Scale, ALGOPLUS, CNPI, DOLOPLUS-2, MOBID-2, PAINAD, PACSLAC/PACSLAC-II, and PainChek®.
These tools help make pain assessment more structured and consistent, but their findings are most useful when interpreted within the broader clinical context rather than viewed as standalone measures3.
Treat pain scores as a clinical signal, not a diagnosis. Observational tools infer pain from behaviour and don’t prove pain in isolation. Scores should be considered alongside the person's medical conditions, baseline behaviour, recent events, physical examination findings, and likely sources of pain. Particular caution is needed when scores fall close to threshold values, as borderline results may not clearly distinguish between pain density categories such as mild and moderate pain.
Compare findings against the person's usual baseline. New or worsening behaviours, including grimacing, guarding, calling out, aggression, withdrawal, reduced mobility, changes in appetite, or sleep disturbances, may provide important clues that pain is present3.
Observe both at rest and during movement. Pain may be subtle or absent while a person is resting but become much more apparent during transfers, dressing, showering, toileting, repositioning, or walking3.
Look for clusters of behaviours rather than isolated signs. A single behaviour, such as calling out, may reflect pain, fear, anxiety, delirium, or environmental distress. Pain becomes more likely when multiple indicators occur together, such as grimacing, guarding, resistance to movement, and reduced mobility3.
Reassess after interventions: The value of pain assessment tools is greatest when they’re used both before and after interventions such as repositioning, toileting, treating constipation, wound care, dental treatment, massage therapy where appropriate, or prescribed pain relief. Improvements in behaviour following these interventions can provide important clues that pain was contributing to the person's distress. Research has also shown that systematic pain treatment can reduce agitation in people living with moderate to severe dementia, reinforcing the importance of considering pain as part of behavioural assessment4.
Involve family members and familiar caregivers: Those who know the individual well are often best placed to recognise changes from usual behaviour and identify what some clinicians describe as the person's "pain behaviour signature".
Document trends, not just score: Recording what the person was doing, what may have triggered the behaviour, which body area appeared affected, what intervention was provided, and whether the score changed afterwards can make pain assessments far more useful for ongoing care planning, handovers, medication reviews, and multidisciplinary decision-making.
Making the most of the consultation
A consultation is also an opportunity to ask questions about what may be contributing to the changes you’ve observed, what further assessment may be needed and what to expect next.
Consider asking:
Could pain be contributing to these behavioural changes?
What other possible causes should we consider?
Could an existing medical condition or medication be contributing?
Would any further assessment be helpful?
Are there non-medication approaches that may help improve comfort?
How will we know whether treatment is working?
When should we arrange a follow-up review?
Understanding the plan helps families and caregivers know what to monitor at home and when to seek further medical review.
As pain is a complex, multidimensional (biopsychosocial), and subjective experience, Dr Atee emphasises that the consequences of unrecognised or untreated pain in people living with dementia extend far beyond physical discomfort. Pain can contribute to behavioural, cognitive, functional, and overall health decline, while also increasing the risk that symptoms are misinterpreted and managed inappropriately. Consequences of untreated pain include:
Worsening cognition and confusion: Untreated pain can increase distress, reduce attention, and contribute to acute confusion or delirium, particularly in frail older adults. In people living with dementia, this may appear as increased confusion, reduced engagement, poorer concentration, irritability, or an apparent acceleration of cognitive decline.
Reduced mobility and functional decline: Pain often leads people to move less, guard painful areas, avoid transfers, resist care, or withdraw from usual activities. Over time, this can contribute to reduced mobility, poorer balance, physical deconditioning, stiffness, contractures, pressure injury risk, falls, and greater dependence in activities of daily living.
Increased behavioural symptoms and inappropriate medication use: When pain isn’t recognised, behaviours such as calling out, pacing, aggression, sleep disruption, or resistance to care may be interpreted as neuropsychiatric symptoms rather than pain-related distress. This can lead to unnecessary use of antipsychotics, sedatives, or benzodiazepines while the underlying pain remains untreated5.
Poorer mood, sleep, appetite, and quality of life: Persistent pain can worsen depression, anxiety, irritability, sleep disturbances, appetite loss, and social withdrawal, while also reducing participation in activities that bring enjoyment or purpose. Studies in aged care homes have also associated pain with poorer quality of life, a greater burden of neuropsychiatric symptoms, and higher depression scores in people living with dementia6,7.
Worse overall health outcomes: Uncontrolled pain can increase physiological stress, reduce mobility, impair nutrition and sleep, increase resistance to care, and complicate the management of other health conditions. It has also been associated with poorer quality of life, a greater burden of behavioural symptoms, increased antipsychotic prescribing, and poorer long-term health outcomes.
Pain identification and treatment should be viewed as a core safety and quality-of-care issue, rather than simply a matter of symptom control.
When should medical advice be sought?
Arrange a medical review if a person living with dementia develops new or unexplained changes in behaviour, particularly if these occur alongside reduced mobility, poor appetite, disturbed sleep, or persistent distress during everyday activities such as dressing, bathing or walking. Although some changes may reflect progression of dementia, others may indicate pain or another medical condition that shouldn’t be overlooked.
Seek urgent medical attention if the person appears to be in severe pain, if the changes follow a fall or injury, or if they’re accompanied by fever, chest pain, difficulty breathing, sudden weakness, persistent vomiting, a sudden reduction in alertness, or sudden inability to stand or walk.
Early medical review can help identify treatable causes, relieve discomfort and ensure the person receives the most appropriate care.
Looking beyond the behaviour
Changes in behaviour are often the first thing families and caregivers notice. While some reflect progression of dementia, others may be the person's only way of expressing pain or another treatable medical condition.
Recognising that possibility means looking beyond the behaviour itself and remaining open to the possibility that something treatable may be contributing to the change.
When communication becomes more difficult, behaviour can become an important form of communication. The most important question may not be, "Is the dementia getting worse?" but "What might this person be trying to tell me?"
Dr Mustafa Atee, PhD
Research and Practice Lead (Team Leader), Hammond Innovations
Adjunct Senior Lecturer, Curtin School of Diagnostic and Therapeutic Sciences
HammondCare, Australia
LinkedIn: @Mustafa Atee, PhD
This article was produced by Healthful For You. The views and opinions expressed throughout are those of the authors and do not necessarily reflect those of the Expert Contributor. The Expert Contributor has provided input solely for the EXPERT INSIGHT and TIP segments, based on their professional expertise. These comments are intended to offer general guidance and may not apply to all individuals. Any interpretations or conclusions beyond that section are those of Healthful For You. This article is not a substitute for personalised medical advice, diagnosis, or treatment. Please consult your doctor or a healthcare professional regarding your specific health needs.
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References
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- The management of persistent pain in older persons: AGS Panel on Persistent Pain in Older Persons. J Am Geriatr Soc. 2002;50:S205–224.
- Herr K, Anderson AR, Arbour C, Coyne PJ, Ely E, Gélinas C, Manworren RC. Pain Assessment in the Patient Unable to Self‐Report: Clinical Practice Recommendations in Support of the ASPMN 2024 Position Statement. Pain Manag Nurs. 2024;25(6):551-68.
- Husebo B S, Ballard C, Sandvik R, Nilsen O B, Aarsland D. Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ. 2011; 343 :d4065
- Corbett A, Husebo B, Malcangio M, Staniland A, Cohen-Mansfield J, Aarsland D, Ballard C. Assessment and treatment of pain in people with dementia. Nat Rev Neurol. 2012;8(5):264-74.
- Helvik AS, Bergh S, Saltyte Benth J, Selbaek G, Husebo BS, Tevik K. Pain in nursing home residents with dementia and its association to quality of life. Aging Ment Health. 2021;26:1–11.
- Rajkumar AP, Ballard C, Fossey J, Orrell M, Moniz-Cook E, Woods RT, Murray J, Whitaker R, Stafford J, Knapp M, Romeo R. Epidemiology of pain in people with dementia living in care homes: longitudinal course, prevalence, and treatment implications. J Am Med Dir Assoc. 2017;18(5):453-e1.