Recognising Pain in Someone with Advanced Dementia

One of the most challenging aspects of advanced dementia care is identifying when someone is experiencing pain. As dementia progresses and communication abilities decline, people often lose the capacity to express discomfort verbally. This doesn’t mean they stop feeling pain; it means they can no longer tell us about it in words.

Understanding how to recognise pain through non-verbal indicators is crucial for maintaining quality of life and dignity in dementia care. Untreated pain can lead to increased confusion, agitation, depression and behavioural changes that are often mistaken for dementia progression when they’re actually signals of physical distress.

Why Pain Recognition Matters in Dementia

Pain assessment becomes progressively more difficult as dementia advances. Someone in the early stages might say “my back hurts” or point to a painful area. By advanced dementia, they may have lost language entirely or be unable to connect the sensation of pain with the need to communicate it.

Research shows that people with dementia are significantly undertreated for pain compared to those without cognitive impairment. This isn’t because care staff don’t care, it’s because pain becomes invisible and difficult to understand when someone cannot express it verbally. The person suffers in silence whilst those around them often remain unaware.

Unrecognised pain in dementia leads to:

Increased agitation: Pain often manifests as restlessness, pacing or calling out rather than obvious discomfort

Behavioural changes: Someone might become aggressive when touched or moved if they’re experiencing pain

Withdrawal: Pain can cause people to become quiet and withdrawn, which is easily missed in busy care environments

Reduced quality of life: Persistent untreated pain affects appetite, sleep, mobility and engagement with activities

Functional decline: Pain limits movement and participation, leading to faster physical deterioration

Increased confusion: Physical discomfort exacerbates cognitive symptoms

Effective pain recognition and management is therefore not just about comfort, it’s fundamental to good dementia care.

Common Causes of Pain in Advanced Dementia

Understanding what typically causes pain in older adults with dementia helps staff remain vigilant:

Arthritis and joint pain: One of the most common sources of pain in elderly people, affecting knees, hips, hands and spine

Constipation: Extremely common in care home residents and easily missed as a pain source

Urinary tract infections: Can cause significant discomfort but often present atypically in dementia without the classic burning sensation during urination

Pressure sores: Skin breakdown from prolonged sitting or lying in one position

Dental problems: Tooth decay, gum disease or ill-fitting dentures causing mouth pain

Previous injuries: Old fractures, surgical sites or injuries that cause ongoing discomfort

Chronic conditions: Heart disease, diabetes complications or respiratory problems

Muscle contractures: Stiffening and shortening of muscles in people with limited mobility

Infections: Chest infections, skin infections or other acute illnesses

Non-Verbal Pain Indicators

Experienced care staff like those at Lowmoor Nursing Home and Newgate Lodge Care Home learn to read subtle signs that someone may be experiencing pain or discomfort. These indicators fall into several categories:

Facial Expressions

The face often reveals pain even when words cannot:

Frowning or grimacing: A tightened, worried expression or wincing

Furrowed brow: Wrinkled forehead or knitted eyebrows

Closed or tightened eyes: Screwing eyes shut or rapid blinking

Clenched jaw: Tension in the jaw or teeth grinding

Distorted expressions: Overall facial tension that looks uncomfortable

Lack of expression: Sometimes pain causes a frozen, blank look rather than obvious distress

Research into pain in dementia has identified specific facial patterns. The “pain face” typically includes lowered brows, raised upper lip, wrinkled nose and eyes closed or narrowed.

Vocalisations

Non-verbal doesn’t mean silent. People with advanced dementia often express pain through sounds:

Moaning or groaning: Particularly during movement or care activities

Crying or tearfulness: Unexplained emotional distress

Calling out: Repeatedly shouting words or phrases

Sighing: Frequent deep sighs can indicate discomfort

Aggressive or distressed verbal outbursts: Shouting or swearing when usually calm

Changes in usual vocalisations: Someone who normally chats becoming silent, or vice versa

Body Language and Movement

Physical behaviour provides crucial clues about pain:

Guarding: Protecting a body part, holding an arm across the stomach, or favouring one side

Bracing: Stiffening the body or gripping furniture or wheelchair arms tightly

Restlessness: Constant fidgeting, inability to settle or frequent position changes

Reduced movement: Moving less than usual or refusing to move particular joints

Rubbing or touching: Repeatedly touching or massaging a specific area

Pulling away: Flinching or withdrawing when touched in certain places

Movement Difficulties: Limping, shuffling or walking differently than usual

Unusual postures: Hunching over, leaning to one side or adopting protective positions

Behavioural Changes

Pain often manifests as changes in someone’s typical behaviour:

Increased confusion: Pain exacerbates cognitive symptoms

Agitation: Becoming more restless, irritable or difficult to settle

Aggression: Hitting, kicking or resisting care, particularly during personal care

Social withdrawal: Refusing to participate in activities they usually enjoy

Sleep disturbance: Difficulty sleeping, frequent waking or excessive sleeping

Reduced appetite: Not eating meals they previously enjoyed

Wandering: Increased aimless pacing or searching behaviour

Repetitive behaviours: Rocking, hand-wringing or other repetitive movements

Changes During Care Activities

Staff pay particular attention to responses during specific care tasks:

Personal care: Resistance, aggression or distress during washing, dressing and toileting

Movement: Crying out, tensing or pulling away when helped to stand, walk or transfer

Positioning: Difficulty finding comfortable positions in bed or chairs

Eating: Refusing food if chewing is painful or swallowing becomes difficult

Medication: Resisting medications, particularly if swallowing causes discomfort

How Care Staff Assess Pain

Professional dementia care teams use systematic approaches to pain assessment rather than relying solely on observation:

Observational Pain Assessment Tools

Specialised tools help standardise pain recognition. Common examples include:

PAINAD (Pain Assessment in Advanced Dementia): Scores five areas (breathing, negative vocalisation, facial expression, body language, consolability) to create an overall pain score

Abbey Pain Scale: Evaluates six behaviours (vocalisation, facial expression, body language, behavioural change, physiological change, physical changes)

DOLOPLUS-2: A longer assessment covering ten pain indicators across somatic, psychomotor, and psychosocial domains

Care staff trained in these tools regularly assess residents, particularly those who cannot communicate verbally. Assessments occur during routine care, after any incident or injury and whenever behaviour changes occur.

Baseline Behaviour Knowledge

Effective pain recognition relies on knowing each person’s normal baseline. What’s typical for this individual? Are they usually chatty or quiet? Active or still? Content or anxious?

Care staff at homes with good person-centred care know residents well enough to spot subtle deviations from normal behaviour. A slight increase in restlessness or minor change in expression might signal pain in someone whose baseline staff understand thoroughly.

Trial Relief Approach

When pain is suspected but not certain, staff sometimes use a “trial relief” approach. Simple pain medication is given (with GP approval), and the person’s behaviour is monitored. If behaviour improves after pain relief, pain was likely the cause. This diagnostic approach helps identify pain that isn’t obvious through observation alone.

Regular Monitoring

Pain assessment isn’t a one-time activity. Staff monitor residents throughout the day:

• During personal care routines (morning wash, dressing, toileting)
• At mealtimes (watching for eating difficulties)
• During activities (noting participation levels)
• When mobilising (observing gait and movement)
• At rest (checking for comfort in chairs or bed)
• Overnight (monitoring sleep patterns)

Documentation of these observations creates a picture of pain patterns over time.

How Care Teams Respond to Pain

Once pain is identified, care staff take several approaches:

Immediate Comfort Measures

Before medication, staff try non-pharmacological approaches:

Repositioning: Adjusting posture, adding cushions or helping someone move to a more comfortable position

Heat or cold therapy: Warm blankets, heat pads or cold compresses as appropriate

Gentle massage: If the person finds touch comforting rather than distressing

Distraction: Engaging activities or music to shift focus from discomfort

Reassurance: Calm presence and soothing verbal comfort

Environmental adjustments: Checking room temperature, lighting or noise levels

Identifying the Source

Staff investigate potential pain causes:

• Checking for obvious injuries or skin problems
• Reviewing bowel and bladder patterns (constipation and urinary retention cause significant pain)
• Examining pressure areas for early skin damage
• Noting when pain occurs (with movement? At certain times? During specific activities?)
• Considering recent changes (new medications? Reduced mobility? Changes in routine?)

Medical Assessment

Registered nurses or care home managers contact GPs when:

• Pain indicators suggest something new or acute
• Usual comfort measures aren’t effective
• Pain seems severe or persistent
• Physical examination reveals potential problems
• Infection or illness is suspected

GPs may visit to examine the person, order tests or prescribe appropriate pain relief.

Medication Management

If non-drug approaches aren’t sufficient, appropriate pain medication is essential:

Regular pain relief: For chronic conditions like arthritis, regular paracetamol or other medications prevent pain rather than just responding to it

As-needed medication: Additional pain relief available for breakthrough pain or before activities that typically cause discomfort

Specialised pain medication: For more severe or neuropathic pain, medications like gabapentin or stronger analgesics under careful GP supervision

Medication review: Regular evaluation to ensure pain medication remains effective and appropriate

Importantly, pain medication in dementia care must be given even when someone cannot request it. This is where staff observation and regular assessment become crucial.

Ongoing Monitoring

After pain relief is given, staff monitor effectiveness:

• Has behaviour improved?
• Are facial expressions more relaxed?
• Is the person sleeping better or participating more in activities?
• Have aggressive or distressed behaviours reduced?

This feedback loop ensures pain management remains effective and is adjusted when needed.

What Families Can Do

When visiting your loved one with advanced dementia, you play a valuable role in pain recognition:

Share your knowledge: Tell staff about your family member’s typical pain expressions. Do they tend to go quiet when in pain? Become irritable? You know their patterns better than anyone.

Report changes: If behaviour seems different during your visit, mention it to staff. You might notice subtle changes they haven’t yet spotted.

Ask about pain: Don’t assume staff have assessed pain. It’s appropriate to ask: “Do you think Mum might be in pain?” This prompts a focused assessment.

Notice during your visit: Does your loved one wince when moving? Protect a particular body part? Seem unusually withdrawn or different compared to usual? These observations help staff.

Support comfort measures: If your family member enjoys a hand massage, has a favourite music artist or songs or feels more comfortable in a particular position, these non-drug approaches might help during painful episodes.

Advocate for assessment: If you suspect ongoing pain isn’t being addressed, it’s appropriate to ask that a GP reviews your family member or that formal pain assessment tools are used.

The Importance of Regular Dental Care

Dental pain is particularly easy to miss in those living with dementia but extremely common and distressing. Care homes should arrange regular dental checks, but families can also help by:

• Ensuring dentures fit properly and aren’t causing rubbing
• Watching for changes in eating behaviour that might indicate mouth pain
• Requesting dental reviews if there’s unexplained agitation or refusing food
• Checking that oral hygiene is maintained daily

Tooth decay, gum disease and mouth ulcers can cause severe pain that significantly impacts quality of life but remains hidden without specific attention to oral health.

Balancing Pain Relief and Quality of Life

There’s sometimes concern that pain medication, particularly stronger options could reduce alertness. Whilst this is a valid consideration, the alternative could provide a strenuous, damaging alternative. At Lowmoor Nursing Home, there is a skilled clinical team, who can help to support with any issues, including a Registered Manager, Deputy Manager, Clinical Lead Nurse and a team of Registered Nurses.

Good dementia care finds the balance:

• Using the lowest effective dose
• Starting with simple pain relief (paracetamol) and only progressing to stronger medication if needed
• Monitoring for side effects
• Recognising that being pain-free and slightly drowsy is preferable to being alert but suffering
• Understanding that untreated pain actually increases confusion and distress more than appropriate medication

Pain Management at Lidder Care

At our care homes in Mansfield and Kirkby-in-Ashfield, our nursing and care staff receive training to help with recognising pain in people who cannot communicate verbally. We use standardised pain assessment tools alongside our knowledge of each resident’s individual patterns and behaviours.

Our approach to dementia care includes regular monitoring for pain indicators, prompt response when pain is suspected and close working with GPs to ensure effective pain management. We understand that maintaining comfort and dignity in advanced dementia requires vigilance, knowledge and compassionate care.

If you’re concerned about pain recognition for a family member with dementia, whether at home or in residential care, our team can discuss how we monitor and respond to pain as part of person-centred dementia care. Call 0330 223 6600 or visit liddercare.com to learn more about our approach to dementia nursing care.