Pain and Dementia: What is Your Role as a Leader?

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Jeannine Forrest

Jeannine Forrest, Ph.D. R.N.
Dementia Educator and Consultant

Identifying and managing pain in persons with dementia is complex and difficult work. As a leader, how do you support, give recognition and sustain this important clinical responsibility?

Support Through Education and Competency:
Support starts when accurate pain assessment and management is held as a high priority by the leadership and clinical team alike. Effective pain management is viewed as a key component of quality of life measures. In contrast, poorly controlled pain is highly correlated with distress and agitation. The resident is often mistakenly mislabeled as resistive, uncooperative and combative; sent for a psychiatric exam; placed on anti-anxiety and antipsychotic medications. Unfortunately, the underlying problem, i.e., arthritis, sciatica, diabetic neuropathy, sitting for prolonged periods of time -remains in place.  When the sedative effect dissipates – the behavior returns, and the vicious cycle continues.

Are your clinical staff educated and competent to identify pain as a major underlying trigger for distress and agitation? Not only nursing, but it is essential that any staff member, nursing assistant, social work, maintenance, housekeeping, marketing be able to identify pain related behaviors and bring them to the attention of the nurse to conduct an assessment.

In addition, it is interesting to note that a study by Aasmul, I, Husebo, B.S., Flo, E. (2016) found that agitation and aggression in residents with poorly controlled pain were correlated with high levels of staff stress. This in turn resulted in staff absences and turnover.

Participants within this study, said that more training in pain assessment and management is necessary to gain a sense of proficiency and control. Your role as a leader is to ensure that pain related education is made available to all departments. Competencies will vary based upon discipline.

Support Through Accurate Documentation:
Residents can experience pain from early through final stages of dementia. What changes is the ability to use words to describe and/or remember the underlying cause or injury. In this respect, it is incumbent within the leadership team to ensure that a variety of pain assessment tools are made available for documentation, both hard copy and electronic form.   Numeric pain scales (0-10) become too abstract to use during early stage. Verbal descriptor scales (no pain, mild, moderate, severe) are more reliable for middle stage. In the late and final stages – pain is primarily communicated through changes in behavior and function. A behavioral scale such as the Pain AD Scale (Pain for Advanced Dementia) Scale is valid, reliable with clinical utility.

Support Through Consistent Communication:
Accurately identifying pain is critical before effective management can take place. How and where and to whom is this information communicated? Are there expectations in terms of time frames? How long do your residents typically experience pain? What analgesic and non-drug strategies are used to provide pain relief? How long does it take the pharmacy to fill and deliver new analgesic orders during the week and weekends? Is this acceptable? How is this information consistently documented and communicated? Are the specific details of what provides relief translated into care plans? Your role as a leader is to answer these questions and find the gaps in documentation and communication. Make sure that the process runs smoothly.

In the same study by Aasmul, I, Husebo, B.S., Flo, E. (2016), nurse participants stated that recognition of the work and stress involved with pain would help in relieving their stress. As a leader, how do you recognize the stress involved? Are there formal and informal ways in which staff truly feel recognized? Consider one step further, as a leader, in what ways do you offer strategies for stress relief? On site meditation, yoga, massage? Others?

Are there policies, procedures, and continuing education programs in place that sustain effective pain management? These practices will form a foundation in order to maintain good practice regardless of changes/absences in your leadership team.

As a leader, your role regarding pain in dementia is complex, hard work and absolutely necessary.  It takes a leadership team to provide the underlying network of support for your clinical staff to provide competent and effective pain relief.


1 Aasmul, I., Husebo, B.S. , Flo, E (2016). Staff Distress Improves by Treating Pain in Nursing Home Patients With Dementia: Results From a Cluster-Randomized Controlled Trial. Journal of Pain & Symptom Management (2016). 52(6) 795-805.