September 2026 A Guide to Compassionate Pain Management in Dementia

A Guide to Compassionate
Pain Management in Dementia

Recognize pain. Respond with dignity. Reassess what matters.

Pain is whatever the person says it is—and when words are limited, behavior and function become part of the story.

For caregivers, families, and health professionals

Evidence-informed guide • Updated August 2026

IMPORTANT This guide supports—but does not replace—assessment and treatment by a licensed clinician. Never start, stop, or change a medication without the ordering clinician or pharmacist.

Why pain is easy to miss

Dementia does not make a person immune to pain. It can make pain harder to describe, remember, locate, or report consistently. As language and reasoning change, pain may appear as a change in mood, movement, sleep, appetite, participation, or response to care. Under-recognition remains a clinical problem, and caregiver knowledge of the person’s usual patterns is essential.

COMPASSIONATE PRINCIPLE Believe the person’s report whenever possible. A calm denial does not always exclude pain, and a new “behavior” deserves a search for pain and other unmet needs.

Common sources of pain

Arthritis, back pain, osteoporosis, fractures, or recent falls

Pressure injury, skin tears, rashes, infection, or poorly fitting footwear

Dental disease, mouth sores, dry mouth, or ill-fitting dentures

Constipation, urinary retention or infection, reflux, or abdominal illness

Headache, neuropathy, shingles, muscle spasm, or positioning-related pain

Pain related to procedures, transfers, bathing, dressing, or wound care

Possible pain signals

What you may notice	Examples
Face & voice	Grimacing, frowning, clenched jaw, moaning, calling out, unusual silence
Body & movement	Guarding, rubbing, rigidity, limping, reduced movement, resisting touch or care
Routine & function	Less walking, eating, sleeping, toileting, dressing, or joining activities
Emotion & interaction	Irritability, fear, tearfulness, withdrawal, restlessness, aggression, sudden confusion
Physiology	Sweating, pallor, rapid breathing or pulse—nonspecific and may be absent

A five-step compassionate response

Connect before you assess. Approach from the front, use the person’s name, reduce noise, speak slowly, and ask permission before touch or movement.
Ask simply. Use one question at a time: “Are you hurting?” “Show me where.” Offer a familiar 0–10, verbal, or faces scale only if the person understands it. Do not require perfect recall.
Observe at rest and with movement. Compare the person with their usual baseline. Watch during transfers, walking, dressing, toileting, eating, and other tasks that may uncover pain.
Look for a cause. Check recent falls, skin, mouth, bowel and bladder pattern, positioning, equipment, infection symptoms, and medication changes. A focused physical assessment belongs to a qualified clinician.
Treat, document, and reassess. Use the agreed plan, note the response, and reassess at a clinically appropriate interval—especially after medication or a care activity.

Choosing a pain-assessment method

Self-report remains the preferred starting point when it is usable. When communication is limited, combine observation, caregiver knowledge, a validated tool, examination, and response to treatment. No observational score proves the cause of pain or replaces clinical judgment.

Situation	Practical approach	Helpful tools / cautions
Able to self-report (Lily/Daisy)	Ask about location, quality, intensity, timing, triggers, and effect on function.	Numeric, verbal descriptor, or faces scale if understood; use the same scale over time.
Limited speech (Daisy/Violet/Rose/Bouquet)	Use short questions, gestures, body map, and observation during movement.	Include a familiar caregiver; allow time to answer.
Advanced dementia / nonverbal (Violet/Rose/Bouquet)	Observe breathing, vocalization, facial expression, body language, and consolability.	PAINAD may structure observation; MOBID-2 uses guided movement and internal-organ indicators. Training and consistent use matters.
Sudden change	Assess urgently for injury, infection, retention, constipation, medication effects, delirium, or another acute illness.	Do not assume the change is “just dementia.”

Non-drug comfort measures

Match the strategy to the likely cause, the person’s preferences, and safety needs. Use non-drug measures with—not as a forced substitute for—appropriate medical treatment.

Position & protect: Reposition gently; support painful joints; relieve pressure; check seating, mattress, footwear, and mobility equipment.

Move with meaning: Use gentle, clinician-recommended movement, pacing, and rest. Stop if distress increases.

Soothe the senses: Offer a quiet setting, familiar music, comforting touch if welcomed, breathing cues, warmth or cold only when clinically appropriate and skin sensation is intact.

Support daily rhythms: Address hydration, meals, sleep, toileting, constipation prevention, and predictable routines.

Adapt the task: Break care into steps, offer choices, schedule painful activities after the pain plan has had time to work, and use equipment or occupational/physical therapy strategies.

Protect connection: Validate distress. Avoid arguing, rushing, restraint, or interpreting resistance as deliberate noncompliance.

Medication: safety before simplicity

Medication selection depends on the pain type, severity, goals of care, prior response, swallowing ability, kidney and liver function, frailty, fall risk, and all other medicines. Use the lowest effective dose for the shortest appropriate time, with a clear monitoring and reassessment plan.

Option	Key clinical considerations
Acetaminophen	Often considered for mild-to-moderate pain. Confirm other medications and interactions, and use extra caution with liver disease, low body weight, frailty, or alcohol use.
Topical treatments	May reduce systemic exposure to chemicals. Check skin integrity, correct placement, interactions, and whether the person may remove or ingest a patch or product.
NSAIDs	Can help select inflammatory pain but raise gastrointestinal bleeding, kidney injury, fluid retention, blood pressure, and cardiovascular risks. Avoid routine long-term use unless a clinician judge benefits to outweigh risks.
Opioids	May be appropriate for moderate-to-severe pain or palliative goals. Start cautiously and monitor sedation, breathing, delirium, falls, nausea, and constipation. Opioids should not be used merely to suppress agitation.
Neuropathic agents	Some antidepressants or antiseizure medicines may be considered for neuropathic pain, but dizziness, sedation, falls, interactions, and cognitive effects require close review.
Avoid duplication	Ask a pharmacist to review prescriptions, OTC products, supplements, patches, and “as needed” medicines. Anticholinergic and sedative burden can worsen confusion and falls.
SAFETY NOTE Never crush, split, or alter a medicine unless a pharmacist confirms it is safe. Never apply heat over a medicated patch. Keep medicines secure and record every dose.

When to seek urgent help

CALL 911 / EMERGENCY SERVICES for severe chest pressure; difficulty breathing; signs of stroke; unresponsiveness; uncontrolled bleeding; a serious fall or suspected fracture; or sudden, severe pain with collapse.

Reassessment: Did it help?

Use the same pain measure or observation method when possible.

Look beyond a score: Is the person moving, sleeping, eating, accepting care, or engaging more comfortably?

Watch for adverse effects such as new sleepiness, confusion, hallucinations, unsteadiness, constipation, nausea, reduced intake, or slowed breathing.

If a trial does not improve comfort or function, contact the clinician rather than continuing indefinitely.

Share results across family, homecare, facility, pharmacy, and medical teams.

Seek same-day clinical advice for new or rapidly worsening pain, sudden confusion or marked behavior change, fever or suspected infection, inability to bear weight, repeated vomiting, a rigid or swollen abdomen, urinary retention, black/bloody stool, new weakness, uncontrolled pain, or concerning medicine effects. When unsure, err on the side of evaluation.

Caregiver pain observation record

Bring this information to the clinician. Record what changed from the person’s usual baseline.

Date / time:

________________________________________________________________________________

What was happening just before the change?

________________________________________________________________________________

What did the person say or show?

________________________________________________________________________________

Where might it hurt?

________________________________________________________________________________

Pain score / observation tool and result:

________________________________________________________________________________

What comfort measures or medications were used?

________________________________________________________________________________

Time given / started:

________________________________________________________________________________

Response after reassessment:

________________________________________________________________________________

Side effects or new concerns:

________________________________________________________________________________

Who was notified and what was advised?

________________________________________________________________________________

Questions for the care team

What is the most likely cause and type of pain?

Which goal matters most: comfort, sleep, walking, transfers, self-care, or participation?

How and when should we reassess? What counts as success?

Which side effects or interactions should we watch for?

Is a pharmacist, dentist, occupational therapist, physical therapist, palliative-care clinician, or pain specialist needed?

What should trigger an urgent call or emergency evaluation?

Clinical evidence and key references

This guide prioritizes current guidance and reviews, supported by landmark validation and intervention studies. Evidence specific to people living with dementia remains limited in several medication areas; individualization and repeated reassessment are therefore essential.

NICE. Dementia: assessment, management and support for people living with dementia and their carers (NG97). Updated guideline.

American Geriatrics Society. 2023 updated AGS Beers Criteria® for potentially inappropriate medication use in older adults. J Am Geriatr Soc. 2023;71:2052–2081. doi:10.1111/jgs.18372.

Pergolizzi JV Jr, et al. Pharmacological Pain Treatment in Older Persons. Drugs Aging. 2024. doi:10.1007/s40266-024-01151-8.

Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the PAINAD scale. J Am Med Dir Assoc. 2003;4:9–15. doi:10.1097/01.JAM.0000043422.31640.F7.

Husebo BS, et al. Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ. 2011;343:d4065. doi:10.1136/bmj.d4065.

Manietta C, et al. Algorithm-based pain management for people with dementia in nursing homes. Cochrane Database Syst Rev. 2022;4:CD013339. doi:10.1002/14651858.CD013339.pub2.

Gardner P, et al. Registered nurses’ knowledge, attitudes and practices of pain management for aged care residents with dementia: an integrative review. Contemp Nurse. 2024;60:496–515. doi:10.1080/10376178.2024.2362290.

Brown R, et al. Opioids for agitation in dementia. Cochrane Database Syst Rev. 2015;CD009705. doi:10.1002/14651858.CD009705.pub2.

Lichtner V, et al. Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools. BMC Geriatr. 2014;14:138. doi:10.1186/1471-2318-14-138.

ABOUT THIS GUIDE Prepared for Botes Memory Method. It is intended for education and care-team communication, not diagnosis or individualized prescribing. Clinical decisions should reflect the person’s goals, diagnosis, comorbidities, allergies, organ function, and full medication list.