What A Pain! A Study of the Treatment of Pain in Older Adults with Dementia

gilmore_bykovskyi_storypageAndrea Gilmore-Bykovskyi, a PhD candidate at the University of Wisconsin-Madison and a John A. Hartford Foundation Building Academic Geriatric Nursing Capacity Predoctoral Scholar, researches a topic that hits close to home: pain. That is, Gilmore-Bykovskyi studies the decisions and strategies used by health care providers to manage the physical pain experienced by nursing home residents with dementia. Treating pain can be a complex problem for health care professionals, as illustrated by one of Gilmore-Bykovskyi’s recent articles published in Research in Gerontological Nursing, “Understanding Nurses’ Decisions to Treat Pain in Nursing Home Residents with Dementia.”[i]

Older adults often deal with daily pain, which can be the result of normal age-related changes, the development of chronic conditions, or medical  interventions such as surgical procedures.[ii] Untreated or poorly-managed pain contributes to a variety of negative health conditions for older adults, such as depression and physical or cognitive deterioration. Effective pain treatment is key to reducing these negative outcomes and giving these patients the best possible quality of life. Older adults with dementia who live in nursing homes are particularly vulnerable to having under-treated pain, largely as a result of their limited ability to communicate their needs.

Part of the undertreatment of pain in this vulnerable group may be related to how care providers, particularly nurses, recognize and treat pain.  Previous research shows that even when nurses recognize signs of pain in people with dementia, they do not always provide the same type of treatment (such as pain medication) as they would to someone without dementia.

In recent years, scientists have made noteworthy advancements in developing tools to help nurses and other health professionals recognize pain in people who have a limited ability to communicate (including those with dementia) [iii]. However, the development of these tools has not yet led to improvements in pain treatment for nursing home residents with dementia.

Gilmore-Bykovskyi’s research is the first to investigate how nurses make decisions to actually treat pain in residents with dementia. The study, which involved interviews with nurses, also explored factors that influenced nurses’ decision-making about treating pain in residents with dementia. Gilmore-Bykovskyi and her colleagues found that nurses made treatment decisions primarily based on how certain they were that a resident was suffering pain. More certainty led to faster administration of pain medication, while less certainty led to further assessments and delayed treatment, or no treatment at all.[iv]  Overall, nurses’ certainty about pain was most strongly influenced by whether or not a resident had dementia or had what they thought was an “obvious or visible” type of pain. Nurses felt uncertain about pain in residents with dementia because they were not confident that these individuals could accurately provide information about their pain. Gilmore-Bykovskyi points out that this is a serious problem because past research has already demonstrated that most people with mild-moderate dementia can accurately report their pain.

Additionally, nurses often categorized any indication of pain (such as grimacing or saying ‘ouch’) as a “general behavior change.”  Persons with dementia commonly express physical or social needs through behavioral changes as their communicative ability diminishes. One consequence of this interpretation was that nurses were less certain that these patients were actually in pain.[v] Rather than deciding to treat pain initially, nurses described a process of trial-and-error to try to relieve the underlying causes of the behavior change, which in their view may have had numerous causes. The descriptions offered by nurses did not consistently include pain treatment.

Gilmore-Bykovskyi’s findings expose the urgent need for additional interventions to support decision-making about behavior changes and pain indicators with nursing home residents. Although nurses who were interviewed in the study described very dedicated and caring approaches to trying to resolve the discomfort of nursing home residents, the decisions they made in response to pain indicators were not evidence-based. Gilmore-Bykovskyi’s article suggests that this is likely because of how complex and challenging it can be to interpret the underlying cause of behaviors and pain indicators.  She also suggested that nurses ‘trial and error’ process is reasonable provided their interpretation of the complexity of behavior changes, but emphasized the importance of clinical decision making that more consistently included pain treatment.

This study brings to light the urgent need to improve the quality of pain management for this vulnerable population and suggests that the development of a standardized clinical decision-support interventions could help nurses respond to the needs of patients with dementia more effectively, thus reducing uncertainty-related treatment delays.[vi] Furthermore, Gilmore-Bykovskyi suggests that nurses be more familiar with the association between aging and chronic or persistent pain [vii]; a better understanding of conditions that could cause pain in dementia patients is the first step in improving pain management.




Jennifer Morgan and Andrea Gilmore-Bykovskyi

[i] Andrea L. Gilmore-Bykovskyi and Barbara J. Bowers. (2013)  “Understanding Nurses’ Decisions to Treat Pain in Nursing Home Residents with Dementia.” Research in Gerontological Nursing.  6(2), 127-38.


[iii] Keela Herr, P. J. Coyne, M. McCaffery, R. Manworren, and S. Merkel. “Pain assessment in the patient unable to self-report: Position statement with clinical practice recommendations” Pain Management Nursing 12.4 (2011): 230-250.

[iv] 130.

[v] 132.

[vi] 135-36.