Pain and Dementia

November 19, 2009

by Lisa Gualtieri, Ph.D., Adjunct Clinical Professor, Tufts University School of Medicine
Having had a grandfather who had dementia, I was struck by Tara Parker-Pope’s New York Times article, “Treating Dementia, but Overlooking Its Physical Toll” about the impact of the lack of understanding families have about the physical toll of dementia. The article referred to a NEJM study that found that lack of understanding of dementia colored the decisions made by families and, further, “that pain control was often inadequate. One in four subjects were clearly suffering from pain, but that number may understate the problem, because the patients were unable to talk about their pain.”
It is years ago now, but I don’t remember anyone ever wondering, or asking his doctor, if my grandfather was in pain. I came across a Web site about understanding pain and dementia ( ) developed to help family members to address the problem of undiagnosed and under-treated pain in the elderly. While it is too late for my grandfather, it is wonderful this issue is being specifically addressed by this and other resources.

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5 Comments Add your own

  • 1.    Libby Bradshaw  |  November 23rd, 2009 at 1:36 AM

    There is a recent novel, “Still Alice”, written by a PhD neuroscientist. It is a powerful read, a fictionalized first person account of experiencing early symptoms of early onset rapidly progressive Alzheimers Disease, of the process of diagnosis, and the impact on the person’s family. The pain here is existential, but it is exceptional and powerful.

  • 2.    Candy  |  January 19th, 2010 at 3:30 PM

    I have just begun a blog titled “Stop Pain in Dementia.” Please visit the site and comment. I need help getting this issue out in the open so there can be meaningful dialog re: required dementia care and pain assessment training for all who attend to our dementia victims, plus pain management training for those who write the orders, i.e. doctors, NP’s, and PA’s. My personal experience with this issue is emotionally crushing. Thank you for your help.

  • 3.    Candy  |  February 2nd, 2010 at 7:03 PM

    I have moved “Stop Pain in Dementia” to a new location. Please visit and comment. Thanks so much.

  • 4.    symptoms of dementia  |  March 10th, 2010 at 4:09 AM

    between dementia and Alzheimers? what is the difference? I think my father may be suffering one of these? does anyone know the warning signs? thanks

  • 5.    Oregon Assisted Living  |  October 13th, 2010 at 3:59 PM

    What a tough issue! But it’s a great thing that new research is bringing more to light. I’m also glad that the world of elderly care is now including memory care specialties, with caregivers that understand these challenges more than most of us would. Still, it’s a heartbreaking thing to go through.

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