Recognizing and managing pain in individuals with dementia can be challenging, as they may have difficulty expressing their discomfort. Caregivers need the right tools to assess pain effectively and ensure proper care. This page provides resources and guidance to help caregivers identify signs of pain, use evidence-based assessment tools, and implement strategies to improve comfort and quality of life for individuals living with dementia at home or in community-based settings.

Resources

Development and Psychometric Evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. (2003). Warden, V., Hurley, A. C., & Volicer, L. Journal of the American Medical Directors Association, 4(1), 9–15. Available at https://doi.org/10.1097/01.JAM.0000043422.31640.F7.

  • This article presents the development and testing of a tool called PAINAD (Pain Assessment in Advanced Dementia) to help caregivers recognize and measure pain in people with advanced dementia—especially when the person can no longer express discomfort verbally.

Pain Assessment in Advanced Dementia (PAINAD) Scale. (2003). Available at https://geriatrictoolkit.missouri.edu/cog/painad.pdf.

  • The PAINAD scale is a simple, evidence-based tool designed to help caregivers assess pain in individuals with advanced dementia who may not be able to communicate verbally. It scores five observable behaviors—breathing, negative vocalization (like moaning or groaning), facial expression, body language, and consolability—on a scale from 0 to 2, with a total score ranging from 0 (no pain) to 10 (severe pain). The higher the score, the more likely it is that the person is experiencing pain. The PAINAD scale is quick to use and helps ensure that people with dementia receive appropriate comfort and care, even when they can’t describe what they’re feeling.

Pain Assessment in Dementia: Evaluation of a Point-of-Care Technological Solution. (2017). Atee, M., Hoti, K., Parsons, R., & Hughes, J. D. Journal of Alzheimer’s Disease, 60(1), 137–150. Available at https://doi.org/10.3233/JAD-170375.

  • This study evaluated the electronic Pain Assessment Tool (ePAT), a point-of-care app using facial recognition and behavioral analysis to detect pain in non-communicative patients with moderate to severe dementia.

Pain Assessment in People with Dementia. (2008). Horgas, A., & Miller, L. American Journal of Nursing, 108(7), 63–65. Available at https://geriatrictoolkit.missouri.edu/cog/AJN-Pain-Assess-108.7.2008.pdf.

  • This article highlights how common—but under-recognized—pain is among individuals with dementia, and explains how caregivers and health care providers can better identify and respond to signs of pain. It also discusses simple pain assessment tools, like the PAINAD (Pain Assessment in Advanced Dementia) scale, which can help caregivers measure pain and ensure that those in their care are treated with comfort and dignity.

The Challenges of Pain Assessment in Geriatric Patients With Dementia: A Review. (2023). El-Tallawy, S. N., Ahmed, R. S., Shabi, S. M., Al-Zabidi, F. Z., Zaidi, A. R. Z., Varrassi, G., Pergolizzi, J. V., LeQuang, J. A. K., & Paladini, A. Cureus, 15(11), e49639. Available at https://doi.org/10.7759/cureus.49639.

  • This article discusses the challenges of assessing pain in geriatric patients with dementia, highlighting how cognitive and communication impairments often lead to underdiagnosed and undertreated pain. It evaluates existing pain assessment tools like PAINAD and PACSLAC and suggests that emerging technologies may offer more accurate and compassionate methods for pain evaluation in this vulnerable population.

The Highly Accurate PAINAD Scale: Pain Assessment in Advanced Dementia Scale. (2023). Nathan, K. GeriatricAcademy.com. Available at https://www.geriatricacademy.com/painad-scale/.

  • This article provides an overview of the PAINAD (Pain Assessment in Advanced Dementia) scale, a practical tool for identifying pain in individuals with advanced dementia who may no longer be able to speak or describe their discomfort. The author explains how to interpret the total score and emphasizes the importance of using the PAINAD scale as part of routine care.

The use of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) by caregivers in dementia care. (2008). Cheung, G., & Choi, P. New Zealand Medical Journal, 121(1286), 21–29. Available at https://pubmed.ncbi.nlm.nih.gov/19098945/.

  • This study evaluates the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC). Conducted in four dementia care facilities with 50 residents (average age ~83, mostly women), the study compared pain assessments made by caregiver staff and a trained observer. Results showed strong agreement between them—about 89% average agreement and a Pearson correlation of 0.83 (p < 0.01)—demonstrating that caregivers can reliably use PACSLAC after proper introduction. Though this was a pilot study with a relatively small sample, its findings support expanding the tool’s use across more diverse settings to improve pain recognition and management in people with advanced dementia.