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 Assessing Pain in Loved Ones with Dementia 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Assessing Pain in Loved Ones with Dementia
Local LBD support group member Lisa forwarded me a link to this short article on assessing pain in loved ones with dementia.

The article is on the The Foundation for Health in Aging website. The website has other information useful for older adults and their caregivers. Some of the educational resources on pain were developed in collaboration with the American Geriatrics Society.


Excerpts from:

Pain in Dementia: Family and Caregivers Guide to Assessment and Treatment
A brochure developed by The Foundation for Health in Aging and The American Geriatrics Society

Persistent pain is common among older persons, because they often suffer from problems such as arthritis and other chronic medical conditions. Older persons commonly have many medical problems which, when combined with dementia, can make it difficult to locate the source of the pain. Determining if your loved one is experiencing pain may be up to you.

Even if dementia makes it impossible for your loved one to respond, your careful observation can reveal important clues letting you know that he or she is experiencing pain.

What Are The Clues?

* Facial Expressions. Does your loved one frown, look frightened, grimace, wrinkle his or her brow, keep eyes closed tightly, blink rapidly, or show any distorted expression?

* Verbalizations/Vocalizations. Does he or she moan, groan, sigh, grunt, chant, call out, breathe noisily, ask for help, or become verbally abusive?

* Body Movements. Is your loved one’s body posture rigid and/or tense? Does he or she fidget, pace or rock back and forth, have limited movement, gait or mobility changes?

* Behavioral Changes. Does he or she refuse food or have an appetite change? Is there any change in sleep/rest periods? Has he or she suddenly stopped common routines or begun to wander?

* Mental Status Changes. Does he or she cry, become more confused, irritable or distressed?

When Does The Pain Occur?

* During movement? Does your loved one grimace or groan or resist movement during personal care (such as bathing), walking, or transferring (from bed to chair, for example)?

* When there is no movement involved? Does your loved one appear agitated or have other behavioral changes, such as trouble sleeping, loss of appetite, or reclusiveness?

The Pain Assessment

If you see any of these symptoms, talk to your health care provider right away. If your loved one has mild-to-moderate dementia and is able to communicate adequately, your health care provider will question him or her directly.

The health care provider may ask the patient to give pain a number from 1 to 10, or use pictures of faces or a “pain thermometer” to help measure the pain.

If your loved one is not able to communicate satisfactorily, you must describe your loved one’s signs of pain with as much detail as possible. Tell the health care provider what you have noticed and give examples. Focus on when the pain occurs. You can describe how it seems to be experienced (for example, whether the pain occurs with or without movement). Tell what—if anything—relieves the pain. The health care provider will make a diagnosis and offer a plan to help relieve the pain.

An important part of the pain assessment is a history of all medicines, both prescription and over-the-counter medicines that your loved one now takes and has taken in the past. Write down all medications and dosages that are being taken and give it to the health care provider.

The health care provider should also perform a physical exam that will focus on the site(s) of pain.The health care provider will evaluate the patient’s physical function (walking, range of motion of joints, etc). Laboratory tests and/or x-rays may be performed.


Medicine is the most common way of controlling pain in older persons. Acetaminophen (the active ingredient in brand name products such as Tylenol) is effective for most persons with mild-to-moderate muscle/bone pain, such as arthritis. Non-steroidal anti-inflammatory drugs, such as aspirin and ibuprofen, can be effective but may have more side effects in older persons. They should not be used by persons with a history of gastrointestinal bleeding, heart disease, high risk of stroke, bleeding disorders, or kidney disease. Because non-steroidal anti-inflammatory drugs have to be taken every day, over a long period of time, they may cause such problems as bleeding ulcers.

For more severe pain, there are the opioid drugs, such as Vicodin or Roxicet to name just a few of the many different products that are now available for moderate to severe pain. These drugs can be very successful in controlling pain, but they need to be watched very closely for problematic side effects such as constipation.

For pain that is due to nerve damage, a variety of drugs used for controlling depression and/or epilepsy have been found to be helpful.

If movement causes pain, the health care provider can prescribe medicines that are to be taken before the movement or activity begins. He or she may suggest ways to change the movement or activity that causes pain. If the pain is caused by something other than movement, the health care provider will investigate other causes.

Pain is a serious problem for many older persons. Alleviating pain in patients with dementia often depends on the observations of the family/caregiver. You and your health care provider can work together to stop the pain and get a better quality of life for your loved one in his/her later years.

Fri Mar 11, 2011 1:31 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Assessing Pain in Loved Ones with Dementia
Interesting. Thanks for posting.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Fri Mar 11, 2011 2:12 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Assessing Pain in Loved Ones with Dementia
great thanks for that - very interesting

cared for Dad who passed away on January 28th 2013 R.I.P.

Fri Mar 11, 2011 8:10 am

Joined: Mon Sep 19, 2011 4:17 pm
Posts: 1
Post Re: Assessing Pain in Loved Ones with Dementia
While I'm aware that this is a bit of an older thread, I am SO glad to have found this resource. It's pretty obvious that people with dementia have immense difficulty expressing their symptoms. We want to help our loved ones, but we can only do so much with the info we already have. If the patient is unable to describe the non-visual pains they have, action needs to be taken by a doctor whose expertise is in geriatrics or dementia cases.
I'm currently researching iu health for any geriatric services or mental health facilities. Anyone have thoughts about this facility or experiences there that they would like to share? Thanks! :)

Bitty Kitteh

Last edited by BittyKitteh on Fri Sep 30, 2011 9:21 am, edited 1 time in total.

Tue Sep 27, 2011 9:51 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Assessing Pain in Loved Ones with Dementia
Not sure what "iu health" is. Can you clarify please? thanks, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Sep 28, 2011 1:54 pm

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Assessing Pain in Loved Ones with Dementia
thanks for article.. never realized how difficult that portion was going to be...
until hubby had leg pain.. and we talked about it and a few hours later i asked how it was...silly me!! he looked at me like i just lost my marbles.. and i thought ut oh,, this is not going to be easy one.. we spent many days like that and i finally decided we need to talk to the doc, as he was falling also... we talked about it all the way there, got there and the doc asked about his leg pain.. and he said what leg pain???..LOL yep another thing to learn to work around and figure out!!
thanks again, robin...

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Wed Sep 28, 2011 2:41 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Assessing Pain in Loved Ones with Dementia
IU is probably Indiana University.

Wed Sep 28, 2011 3:38 pm
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