Imagine this scenario: The staff are assisting Mrs. Jones with her shower. They are worried because during the past several shower attempts, she has become upset and started striking out at them. She used to enjoy her shower experiences but now she immediately gets upset, and it gets worse when they attempt to raise her arms to clean under them.

The nurse on duty is worried that she will hurt herself, and the team is considering asking for a psych referral, so “they can do their jobs.”

Knowing the Signs

While people with dementia have experienced the same physical changes with aging—the presence of degenerative joint disease, other musculoskeletal problems, and the risk for diabetes with peripheral neuropathies—they are less likely to verbalize their pain. A growing number of studies show people with dementia receive less pain medication or nonpharmacological treatment.

Untreated pain may lead to behavioral expressions of discomfort and distress, which can lead to inappropriate psychotropic medication use. To recognize pain in those living with dementia, staff need to become fluent in the individual nonverbal signs residents offer so the team can provide appropriate pain-related interventions.

Undertreated Pain

People with dementia are exposed to the same injuries and illnesses across their lifespans as other older adults. According to a 2015 article published in Current Clinical Pharmacology on the prevalence of analgesic use and pain in people with dementia, because they may not verbalize pain when asked, residents with dementia are given less pain medication than other older adults, despite having the similar number of conditions.

While the challenges of providing good oral care practices and oral health for people with dementia is well known, they were less often recognized as having oral pain than their cognitively intact peers, according to a 2017 article published in Clinical Oral Investigations on oral health and orofacial pain in older people with dementia.

Similarly, it is a common understanding that hip and pelvic fractures are quite painful, yet people with dementia received 50 percent less pain medication after these events than others without dementia, according to a 2017 article published in BMC Geriatrics.

Dementia Neurologic Changes that Impact Pain

The limbic system consists of several brain structures that are impacted in Alzheimer’s disease and many other forms of dementia. Cognitive changes associated with memory storage are the most recognized; however, the limbic system also plays a large role in mood regulation. As dementia progresses, people lose the ability to inhibit responses. It can be described as losing the filter that, when healthy, modulates actions as a result of feelings.

Applying this to painful feelings, individuals may lose the ability to regulate their responses and be more inclined to seem distressed or strike out to try to remove the cause of the painful feeling.

Additionally, there may be other neurological factors that lead to behavioral responses to pain. In an article in Clinical Interventions in Aging in 2013, W. Achtreberg et al. noted that behavioral responses to pain may be more significant in early and moderate stages of dementia. Hyperalgesia, which occurs in people with chronic pain, is an increased sensitivity to painful stimuli.

When a care team member is providing assistance with activities of daily living and unknowingly moves the resident’s arm into a painful range, this increased sensitivity may create what appears as an over-reaction to the activity. 

Allodynia may also occur more often in people with dementia; it occurs when the person has a painful response to a nonpainful stimuli. An example may be someone who displays pain behaviors while being showered, despite care being provided in an attentive and appropriate manner. The feeling of the water on their skin may have caused a painful response, despite ordinarily not being a painful stimulus. This surprises caregivers when the resident becomes upset in the shower.

Assessing Pain in People with Dementia

The Centers for Medicare & Medicaid Services (CMS) has developed a Pain Recognition and Management Critical Element Pathway to aid survey teams in determining if pain is being addressed for all residents. It recognizes that nonverbal residents or residents with cognitive impairments may not be able to verbalize their pain and specifically directs surveyors to ask staff how they assess pain for this population.

The Minimum Data Set (MDS) Item J0600 asks for the resident to identify pain on the numeric rating scale (0-10, please rate your worst pain over the last five days) but for residents who are unable to answer, it directs staff to J0800 to assess for indications of possible pain (nonverbal sounds, vocal complaints, facial expressions, protective body movements). 

In the early stages of dementia, asking about pain should still be included in any assessment, but as the disease progresses, other assessments will need to take place. One caution to keep in mind even in early dementia is that cultural differences can exist in pain words. A 2015 article published in Pain Management Nursing on the ethnic differences in nonverbal pain behaviors found that African Americans were significantly less likely to use pain words when compared with Caucasians, but there is a deficit in research to fully understand this feature.

Tests Available

To best assess pain in people with dementia, the American Geriatrics Society (AGS) has identified six categories of behavioral expressions or actions that may indicate pain. The six categories are similar to the MDS description above but also include changes in interpersonal interactions, changes in activity patterns, and changes in mental status (see graphic). 

There are several tools that can be used to document pain expressions that are beyond the typical “pain words.” The Pain Assessment in Advanced Dementia Scale (PAINAD) has five categories that are scored on a 3 point scale (0-2): breathing independently of vocalization, negative vocalization, facial expression, body language, and ability to be consoled. 

These categories match well with the AGS guidelines, and the tool has been shown to be simple, valid, and reliable, according to a 2003 article published in The Journal of the American Medical Directors Association.

The Pain Assessment Checklist for Seniors with Limited Ability to Communicate-II (PACSLAC-II) is a 31-item checklist of various nonverbal and non-language-based communications. 

According to research such as a 2014 article published in The Clinical Journal of Pain, this pain assessment checklist also has demonstrated reliability and validity. It is important to remember, these observations and data should be collected not only at rest, but also when the resident is participating in or receiving care that may cause pain or discomfort.

Using these tools can help track pain levels over time by establishing repeated measures to determine a baseline for each individual. They can then be used to inform root-cause analysis when investigating behavioral responses that interfere with care delivery and resident well-being. Simply considering on first review “could the resident be in pain” and using a tool to compare staff observations to the resident’s baseline should be a first step in determining a comprehensive approach and addressing undertreated pain in people living with dementia.
Cathy Haines Ciolek, PT, DPT, FAPTA, is president of Living Well With Dementia®, providing education and consulting to improve well-being and create positive expectations for aging adults. She can be reached at or 302-753-9725.