Anyone who has ever visited or worked in a residential facility for the elderly with dementia is likely to have heard some pitiful expressions of distress in the form of moaning, shouting or screaming out. Even with the most careful and consistent observation, it is often unclear whether the person is in emotional and/or physical pain or whether some other process is at work. Sometimes there appears to be a reason, as for example when patients need to be moved, but even then it can be difficult to know whether the person is shouting as a result of confusion, irritation, frustration or whether being moved is causing pain, or something else entirely.
Pain & Professional Pitfalls
When no reason can be found for the sounds of distress the cause is put down to the symptoms of dementia. Making assumptions about dementia is one of the biggest pitfalls for any caregiver and is something that needs continual appraisal. Even when people can communicate effectively there is evidence to suggest that observers tend to assume that people over-report pain either verbally or in their facial expressions. Worse still, there is evidence to suggest that people with cognitive disabilities may have an even higher risk of being under-medicated for pain. Moreover, some people do not react verbally to pain and may withdraw into themselves rather than moan or shout. So whilst noise may be the most obvious indicator of distress it does not necessarily signify that the person is in pain.
Because the experience of pain is both personal and subjective the most we can do is get the person to report that experience and for us to respond in a trusting and non-judgemental fashion. It can be helpful to ask the person how they feel, whether they are in pain or discomfort and even to point out things you have previously been aware of e.g. "and how's that old ankle injury, does it ever get painful"? People also describe pain according to their experience of it. Pains may range from a twinge, to piercing, throbbing, stabbing, crushing or any other term the person feels will help to convey their level of distress. There are other assessment devices that can be used for people who have problems communicating verbally. These vary from pictures of facial expressions in various levels of distress, to scales from 0-10 or 0-100, where zero is no pain and the worst possible pain is at the other end of the scale.
It is entirely possible that the stage of dementia has moved to a point where communication is at its most problematic and the patient can neither respond to questions nor understand what is being said to them. Sometimes a loved one can spot the signs of pain in a particular expression or the way the person moves or even the way they breath. This can be tremendously helful information to health professionals who then know what to look out for. If no such help is available but pain is suspected then there is really no harm in assuming pain exists. In such circumstances analgesics should be given and the patient observed for signs of becoming more settled. If such signs are given then you have relieved pain - if no signs are given then either the amount of analgesia is insufficient or there is no pain. Either way, no harm is done.
Drayer, R.A., Henderson, J., & Reidenberg, M (1999). Barriers to better pain control in hospitalized patients. Journal of Pain and Symptom Management, 17, 434-440.
Fraser, W.I., & Ozols, D. (1981). Detecting pain and distress in the profoundly retarded. In P.Mittler (Ed). Frontiers of knowledge in mental retardation, Vol. 1.(pp.25-33). Baltimore, MD: University Park Press.
Harrison, A. (1991) Assessing patients' pain: identifying reasons for error. Journal of Advanced Nursing, 16, 1018-1025.