|ADvancing Care Newsletter|
|Past Issues | Download PDF||March/April 2012|
The first step is learning about all the ways that people with dementia let us know when they have pain. Pain observation tools have been developed specifically to help us do this, and one example is the Pain Assessment in Advanced Dementia, or PAINAD. What makes the PAINAD different is that it identifies behaviors typical of many people with dementia that are often not associated with pain, such as:
Dr. Carol Long, PhD, RN, FPCN, a researcher in Phoenix, Arizona, has been studying pain in people with dementia for many years, and she offers the following typical example:
“Help me! Help me!” calls out Mrs. Green. For more than six months, these are the cries of an 85-year old woman with advanced dementia who is a typical nursing home resident. On any given day, her screams can be heard at regular intervals, echoing down the long hallways of the facility. She often strikes out at caregiving staff when attempting to put on her clothes. She is placed in her geri-chair in the morning and rhythmically slams her hands on the tray in apparent distress, often for hours at a time. Diagnosed with degenerative arthritis forty years ago, Mrs. Green had been receiving pain medications and other non-pharmacologic treatments in the past, but not recently because Mrs. Green has not been asked nor does she say she has pain. While caregivers attribute these actions to her usual self and the normal progression of dementia, one has to ask: What is Mrs. Green telling us through her behaviors? Would this scenario be expected for someone who did not have dementia?
In this example, Mrs. Green is telling the caregivers that she is in distress and uncomfortable. The medical team was called to take a look, once again, at her behaviors and consider an antipsychotic to calm her. Could they too be missing something? And more importantly, what can be done about it?
After a thorough medical record chart review, a complete physical, and careful analysis of her behaviors, the team decided to start Mrs. Green on a low dose of acetaminophen (for pain) every 6 hours around-the-clock for a three-day trial period. While Mrs. Green sometimes tells others about her pain, the staff has started to use the PAINAD to alert them to when her behavior suggests she is having pain. Now caregivers regularly reposition Mrs. Green in a more comfortable chair and she lies down each morning after breakfast. Daily grooming activities are staged and her clothes have been modified to assure that she is comfortable when dressing. She no longer calls out or strikes at staff and appears to be more attentive and engaged. With gentle massage to her hands and feet, she often smiles and is less restless. They document her self-report and any behaviors and the response to the interventions in the medical record on each shift. After five days of treatment and continuous evaluation by the caregiving and medical provider team, she is resting more comfortably and the pain medication is administered as prescribed. No antipsychotics were ordered or ever required. Mission accomplished? Probably for now, but caregivers will need to be vigilant in ongoing monitoring to determine if Mrs. Green’s comfort needs are still being met, now that staff recognize her behaviors were related to pain and nothing else.
Situations as described above demonstrate it is possible to meet the needs of persons with advanced dementia in a comfort-focused way. There are many reasons persons with dementia may demonstrate behaviors but often pain has not been assessed or addressed. Here are some recommendations to assess and address pain in a proactive way:
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|Resources & Events|
|Pain Assessment in Advanced Dementia
For more information about Pain Assessment in Advanced Dementia (PAINAD) go to:,
Carol O. Long, PhD, RN, FPCN
Geriatric and Palliative Care Consultant
Co-Director, Palliative Care for Advanced Dementia, Beatitudes Campus
Webinar: Geriatric Mental Health Alliance
“From Patienthood to Personhood”
May 3, 2012
2:00 - 3:30 PM
for more information, go to