Dementia and Pain Reporting
The incidence of chronic pain in the elderly is reportedly 50% (Teater, 2017 and Van Kooten et al, 2016). The key word is ‘reportedly’ as it is known that elders (and those with dementia) do not always report pain. This is due to many factors individualized to those experiencing pain. A few will be presented here. Most common to dementia patients is the problem of communicating pain clearly due to an inability to describe, remember, and perhaps, recognize pain (Van Kooten et al, 2016). There may be fear of hospitalization, having to take more medications, the need for surgery or being sent to a long-term care facility (Untreated pain in dementia: Signs, causes, and treatments. June 17, 2019. Retrieved from https://www.dailycaring.com on June 26, 2019). Others may not report pain due to a desire to please physicians, pride, or belief that nothing can be done to provide treatment or relief. Others may be depressed due to frequent losses common to aging including loss of loved ones, independence, relationships, and enjoyed activities. Pain can be caused by a myriad of factors including illness, infection, injury (including falls); issues with digestion, absorption, and excretion; bed sores, weather changes, and comorbid conditions to name just a few. Likewise, the consequences of not addressing and managing pain are complex and entwined. Untreated pain can result in suffering, prescription of inappropriate treatments, behavioral changes, depression and withdrawal, increased risk of falls, worsening of dementia symptoms, loss of functional abilities, and poor quality of life (Pain and dementia. Dementia Australia, 2017. Retrieved from https://www.dementia.org.au on July 1, 2019.) I want to reiterate this in summary: untreated pain can cause the IWD’s condition to deteriorate behaviorally, emotionally, and physically to include the body’s autonomic responses affecting appetite, sleep, etc. (Gonzalez, 2015).
But pain in dementia is difficult to evaluate. Self-reports are considered the ‘gold standard’, but many elderlies find facial reporting charts or levels difficult to use. Communicating clearly what is felt can be a significant obstacle. Some measurements may not be useful for all types and stages of dementia (Zwakhalen et al, 2006). One study indicated there are more than 30 specific instruments to measure pain in dementia, but most studies utilize nonspecific assessment tools instead (Van Kooten et al, 2016). Nor do studies report comorbid conditions that could contribute to pain. In fact, there are very few studies specifically investigating pain in dementia (Van Kooten et al, 2016).
There are two main parts to pain assessment: if pain exists and its level or intensity. Characteristics of pain itself include the quality of pain, location, emotional burden, and functional response. Ways to assess pain vary and include self-report, behavioral observation, and physiological response (Zwakhalen et al, 2016). Brief assessment scales may be faster to apply but are less sensitive to detecting pain; more complex assessments take longer to administer and are less specific in results (Gonzalez, 2015). According to one review of the literature, no studies have tried to differentiate the intensity of pain (Husebo et al, 2016). For example, does a behavioral response such as screaming indicate more pain than cursing?
Pain assessment should occur both at rest and during functional activities/movement. This is because lack of movement (and level of cooperation during such activity) can be an avoidance of pain rather than resistance to care.
Even if one does find a way to assess pain, this does not necessarily improve pain management.
​
Sources:
Gonzalez LCA. The neurologist facing pain in dementia. Neuralgia, 2015;30:574-585.
Husebo B, Achterberg W, Flo E. Identifying and managing pain in people with Alzheimer’s disease and other types of dementia: A systematic review. CNS Drugs, 2016;30:481-497.
Teater M. “Behavioral Treatment of Chronic Pain”. PESI, San Antonio, Texas, August 7, 2017.
Van Kooten J, Binnekade T, van der Wouden J, Stek M, Scherder E, Husebo B, Smallbrugge M, Hertogh C. A review of pain prevalence in Alzheimer’s, vascular, frontotemporal and lewy body dementias, Dement Geriatr Cogn Disord, 2016;41:220-232.
Zwakhalen S, Hamers J, Abu-Saad H, Berger M. Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools. BMC Geriatrics, 2006;6:3.