March 24, 2023
Treating patients with severe dementia is complex and challenging. The frustrating reality is that these individuals are usually unable to communicate basic needs. In turn, unmet needs contribute to the behavioral and psychological symptoms of dementia (BPSD) — in particular, agitation, aggression (verbal and/or physical), apathy, and depression.1,2 BPSD are disruptive and distressing to the individual living with dementia and those in their orbit.1,2 The vast majority (>95%) of patients with dementia will experience BPSD.1 Those who experience BPSD are more likely to have cognitive and functional decline, be institutionalized, have a lower quality of life, and be prescribed medications (e.g., antipsychotics) inappropriately.1,3 The precipitating causes of BPSD are a complex combination and usually a combination of altered neurotransmitter function, neurodegenerative changes, underlying conditions, and unmet needs.1,2
Unfortunately, untreated/undertreated pain in dementia often goes unrecognized and contributes to BPSD. Dementia usually affects older adults who are predisposed to painful conditions including arthritis, infections, cancer, fractures, and wounds.1,4 The numbers are staggering — it’s estimated that between 60 and 80% of nursing home patients with dementia routinely experience pain.4
An Australian study sought to clarify the prevalence and intensity of pain experienced by patients with different types of dementia and to see if there was a link between pain and BPSD.1 Investigators included 479 “aged care” residents with dementia and BPSD who were unable to reliably communicate the presence and intensity of pain.1 To account for this, the study utilized a cutting edge pain assessment tool, the PainChek application, that uses a smart device’s camera and the application’s artificial intelligence to analyze a patient’s face for facial expressions indicative of pain.1,5 The application is able to formulate a pain score based off of facial analysis and responses to a digital questionnaire answered by the application user, usually the clinician.1,5
The investigators found that two-thirds of all study participants experienced pain and almost half of those patients with pain experienced moderate to severe pain.1 They reported that patients with mixed dementia and dementia with Lewy bodies had the highest prevalence of pain (followed by Alzheimer disease, vascular dementia, and frontotemporal dementia).1 Patients with mixed dementia were also more likely to have severe pain.1 Interestingly, patients with frontotemporal dementia were more likely to experience no pain (or mild pain), possibly due to atrophy in the prefrontal cortex of the brain.1
Regardless of dementia type, the authors concluded that pain is very common in advanced dementia and strongly linked to behaviors like agitation and aggression.1 Patients who experienced pain had about 25% more BPSD and about 34% more severe BPSD compared to those patients with no pain.1 In other words, those with dementia and pain were more likely to have BPSD (and worse symptoms) than those without pain.
Pain assessment tools that rely only on verbal communication are poor indicators of the presence and severity of pain in these individuals, so observational pain scales like the Pain Assessment in Advanced Dementia (PAINAD) have been developed.1,6 Instead of these relatively subjective scales, objective tools like the PainChek application could represent a better way to identify and quantify pain in those with severe dementia and others who are unable to communicate.5
Pain is commonly experienced by patients with dementia, but often goes unrecognized. In patients with BPSD, conduct a thorough pain assessment to rule out pain as a contributing factor. If pain is suspected, a routine analgesic regimen should be trialed since patients may lack the cognitive ability to reliably request analgesics on an as needed basis.
In the future, objective tools like the PainChek application may improve clinicians’ abilities to detect and quantify pain in individuals with severe dementia.
John Corrigan, PharmD, BCGP
Clinical Pharmacist, OnePoint Patient Care
John’s primary responsibilities as a clinical pharmacist at OnePoint Patient Care are staff and partner education, medication utilization reviews, and assisting with formulary development and maintenance. He attended the University of Iowa for both undergraduate studies and pharmacy school. He earned a PharmD from the University of Iowa College of Pharmacy in 2013. He was first introduced to hospice and OnePoint Patient Care as a 4th year pharmacy student, completing a 5-week elective clinical hospice pharmacy rotation. He started his employment with OnePoint Patient Care as a staff pharmacist in 2014. He transitioned to his current role, as a clinical pharmacist, in the spring of 2019.