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Pain in residents who cannot tell you

For facility staff

A person in pain who cannot report pain will present as agitated. Agitation gets treated. The pain does not. This is the most consequential loop in long-term care, and it has been tested in a randomized trial.

Before you read on

Never stop or change a prescribed medication without speaking to your own prescriber. Several of the classes described on this site rebound, or cause a withdrawal syndrome, when they are stopped abruptly, and some have to be reduced gradually over weeks or months under supervision. Nothing here is advice about your own medication, and nothing here is a reason to change anything on your own.

The trial

60 units across 18 nursing homes in five municipalities. 352 residents with moderate to severe dementia and clinically significant behavioral disturbance. Half received a systematic stepwise pain-treatment protocol for eight weeks; half received usual treatment and care.

The protocol was ordinary. 69% of the treated residents received nothing stronger than paracetamol — acetaminophen — with a small number stepping up to a transdermal patch, oral morphine or pregabalin where that was appropriate.

Agitation fell by an average of 17% compared with usual care at eight weeks, and the overall severity of neuropsychiatric symptoms improved as well. Then the pain treatment was stopped, and over the following four weeks the agitation scores in the treated group rose again while the comparison group stayed flat.

Two further details worth knowing. Well over half the residents in both groups had clinically relevant pain at the start. And the improvement was not sedation: cognition and activities of daily living did not worsen, and only a quarter of the treated group received anything sedating at all.

What to look for

Pain in someone who cannot report it does not look like pain. It looks like behavior, and it is specific to the moment.

  • Distress that is tied to movement — during transfers, turning, washing, dressing, or being helped to stand. This is the single most useful pattern, because it points at a body part.
  • Guarding. Not using an arm, not weight-bearing on one side, holding a part of the body, resisting one specific direction of movement.
  • Facial expression on movement — grimacing, wincing, a furrowed brow that appears at the same moment every time.
  • Vocalizing that has a rhythm — calling out, moaning, or noise that comes with breathing or movement rather than continuously.
  • Resistance to care that is new, or resistance to one specific task rather than to care in general.
  • Restlessness, pacing, or being unable to settle in a chair or a bed.
  • Not eating — which may be dental or mouth pain rather than appetite.
  • Worse in the late afternoon and evening, when morning analgesia has worn off and the person is tired.

What to ask about the ordinary causes

Before anything else. Most of the answers here are things a shift can check.

  1. Constipation. When did they last open their bowels? Constipation is painful, extremely common, and frequently caused by medication.
  2. Urinary retention — an uncomfortable, distended bladder in someone who cannot say so. Also a common medication effect.
  3. Pressure areas. Look.
  4. The mouth. Dental pain, ill-fitting dentures, oral thrush. Rarely checked and a common cause of both distress and not eating.
  5. Positioning. A chair that does not fit, a limb hanging, a foot without support.
  6. A recent fall or near miss, including one nobody witnessed.
  7. Old problems. Arthritis does not go away because someone can no longer name it. A resident who had a painful shoulder for twenty years still has one.

Non-drug relief first

Positioning, warmth, gentle repositioning before rather than during care, a slower approach to a task that hurts, comfort items. These are tried first and they often work — and, as above, they leave no record when they do. Write them down: “less distressed during transfers if we warm the left shoulder first” is a clinical finding.

How to report it

The observation carries more weight when it names the moment rather than the mood.

  • Say when it happens. “During transfers” is far more useful than “in the afternoons.”
  • Say what part of the body, if the behavior points at one.
  • Say what helps. If distress settles when you support the left arm, that is diagnostic information.
  • Say when it started, and what else changed around then.

“She winces and guards her left side every time we turn her, and she has stopped using that arm to reach. It started after the fall on the 4th.” That sentence is hard to set aside. How to raise a concern.

Why this matters so much

Because the alternative to finding the pain is usually something sedating. A resident whose pain is treated as agitation ends up in pain and sedated, harder to assess, harder to rehabilitate — and the sedation itself will be recorded a few weeks later as decline. The trial above showed the loop runs in reverse too: treat the pain, and the behavior changes.

The structured approach used in dementia care makes this explicit — its investigation step names pain and undiagnosed medical conditions including urinary infection, constipation, dehydration and anemia, and its authors note that effective pain management “can lead to reducing unnecessary psychotropic prescriptions.”

Back to the staff track.

What the evidence does and does not show

Sedating medications impair gait, balance and reaction time, and their labels say so. That part is not in doubt. What has not been shown is that a deprescribing program reduces fall rates — the trials that tested it were small, short, and mostly measured a medication count rather than a fracture. Those are two different questions, and absence of evidence from underpowered trials is not evidence that the drugs do not cause falls. What the evidence actually shows about deprescribing and falls.

References

  1. Husebo BS, Ballard C, Sandvik R, Nilsen OB, 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. PMID 21765198 · DOI 10.1136/bmj.d4065.
  2. Kales HC, Gitlin LN, Lyketsos CG; Detroit Expert Panel. Management of neuropsychiatric symptoms of dementia in clinical settings: recommendations from a multidisciplinary expert panel. Journal of the American Geriatrics Society. 2014;62(4):762–769. PMID 24635665 · DOI 10.1111/jgs.12730.
  3. Reus VI, Fochtmann LJ, Eyler AE, et al. The American Psychiatric Association Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients With Dementia. The American Journal of Psychiatry. 2016;173(5):543–546. PMID 27133416 · DOI 10.1176/appi.ajp.2015.173501.
  4. Clegg A, Young JB. Which medications to avoid in people at risk of delirium: a systematic review. Age and Ageing. 2011;40(1):23–29. PMID 21068014 · DOI 10.1093/ageing/afq140.

Bibliographic records on this page were retrieved from PubMed. Every reference links to its DOI or PubMed record.

Written and medically reviewed by Dr. Gurpreet Singh Padda, MD, MBA, MHP, founder and medical director of DWARAA. Last reviewed . This page is educational. DWARAA does not prescribe, deprescribe, diagnose or treat.