Thank you so much kdawn32! It's nice to know someone else has the same problem with their loved one. I am her primary care giver. We have a physical scheduled for later this month. I thought it might be me. It is probably a problem between the pain source and their brains. Thank you for replying. You have encouraged me to keep working with our communication.

Hi @sallysue and @kdawn32,
I was intrigued by your question regarding pain perception in people with dementia. I have seen this same inconsistent reaction to pain in my uncle. I set out to research for information about it. The research literature revealed a couple articles of note:
- Altered pain processing in patients with cognitive impairment https://www.sciencedaily.com/releases/2015/05/150529131509.htm
- Pain and temperature processing in dementia: a clinical and neuroanatomical analysis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620514/

What caught my attention is that my Google search returned several results for online forums where exactly this topic was discussed among other caregivers who witnessed the same phenomenon. It is obviously a topic that requires further study.

PS: Sallysue - here is how you can start a new discussion on a new topic in the Caregivers group (for future reference):
1. Go to the Caregivers homepage https://connect.mayoclinic.org/group/caregivers/
2. Click START A DISCUSSION.
3. Write a title.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

Thank you SO much. The articles are so helpful. Thank you too for the info on how to start a discussion. You are very very helpful!

Thank you Colleen. I look forward to reading these articles. She also has issues with temperature,

Hi @IndianaScott, @sallysue and @kdawn32,
Because my search returned so few evidence-based research studies and so many caregiver-reported cases, we took the question to a couple of Mayo Clinic neurology experts who specialize in dementia. Drs Nilufer Taner and James Watson wrote:
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"Increased sensitivity or tolerance to pain are not symptoms typically associated with neurodegenerative dementias. Indeed, these dementias (e.g. Alzheimer’s disease, dementia with Lewy bodies etc.) do not involve the peripheral nervous system nor the brain regions involved in pain perception.

That said, people with dementia, particularly those in advanced stages can suffer from a variety of problems that can lead to pain (such as bed sores, musculoskeletal pain due to reduced mobility etc.). Furthermore, their behavioral responses to certain situations can become enhanced or distorted which can conceivably influence their responses to adverse sensations or situations such as pain.

Having said all this, to the best of my knowledge there are no concerted studies investigating pain perception in dementia patients (ideally in the mild stages), so it is possible that we, as physicians and researchers, do not yet know all aspects of a potential pain-dementia relationship."

"I agree with what my colleague said and add that people with dementia can sometimes perseverate [repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased] on things as well which can influence this sense of those around them that there are periods of more pain issues. The pain issue may not have changed, the patient with dementia’s focus on the pain issue may have changed. Pain medications are challenging in their usage in people with dementia as the medications can further cloud cognition or slow cognitive processing. Distraction and things that keep a patient actively engaged in other things is often useful in these situations."

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Hope this helps.
Colleen

Thank you @colleenyoung Wonderful to get this information. All in all, a very tough issue for patients, caregivers, and even the medical professionals. Always good to know we are not alone when we are flummoxed by something in caregiving!

Peace