Coping with Pain in End-Stage Alzheimer's Patients

Pain Management for 

Late-Stage Alzheimer’s & 
Frontotemporal Dementia Patients 

 Evelyn Smith

M. S. in Library Science, University of North Texas (2012)

A couple of weeks ago Mother started physical therapy treatment for the contractures in her hands since they have started to curve in like claws, and it is difficult to straighten them.  Her Passive Range of Movement exercises also required the therapist to gently move her arms.  Since Mother had not spoken in several years, she surprised everyone when she not only resisted one of her arms being moved, but she firmly responded with a very easily understood “No!”  However, it was also obvious that Mother felt some relief when the therapist applied heating pads to her shoulders. This episode thus summarizes some of the problems and solutions that can occur when caregivers try to manage pain in late-stage Alzheimer’s and Frontotemporal Dementia:

• Patients ordinarily cannot verbalize their pain unless the caregiver is touching the afflicted part. Usually, they respond to pain through behavioral symptoms;

• Late-stage dementia patients are more often in pain than their cognitively-intact contemporaries since they don’t conventionally express their discomfort or pain;

• The best way to control pain is to keep it from occurring in the first place; for example, starting Passive Range of Movement exercises as soon as an observant caregiver or family member notices the patient’s inability to straighten out or move a body part; 

• The goal of pain management in late-stage dementia is to make the patient comfortable rather than to eliminate it entirely.

___________

Web Sources on Pain Management for 
Late- & Hospice-stage Alzheimer’s & Frontotemporal Dementia Patients

Alzheimer’s dementia and pain management. (2011, Sep. 29).  Support for Home In-Home Care.  Reprinted from Alzheimer’s dementia and pain management. (2011, Sep. 29).  Retrieved from http://supportforhome.wordpress.com/2011/09/29/alzheimers-dementia-and-pain-management/

Reviewing Verna Benner Carson’s “Pain: The Hidden Culprit Behind Challenging Behaviors of Those with Alzheimer’s” as found in the September 2011 issue of Caring, this article notes that caregivers often misinterpret patient behavior and so withhold it or give inappropriate medication (Alzheimer’s dementia, 2011, para. 1-3). The article then summarizes the three protocols for determining the intensity of pain—the Wong-Baker FACES Pain-Rating Scale, the PAINAD five-item observational tool, observing breathing, negative vocalization, facial expressions, body language, and  the Abbey Scale used with very late-stage dementia patients (para. 4-8). 

Alzheimer’s disease and end-of-life issues. (2003, Aug. 1).  Alzheimer’s Disease Education and Referral Center. http://www.nia.nih.gov/alzheimers/features/alzheimers-disease-and-end-life-issues

The advanced stage of Alzheimer’s ordinarily lasts from 1.5 to 2 years; however, 20 to 30 percent of end-stage Alzheimer's patients live between four to six years or in rare cases even as long as ten years (Alzheimer’s disease, 2003, para. 4).  While the purpose of palliative care at this point is to relieve symptoms and give comfort, aggressive treatment (tube-feeding, mechanical respiration, kidney dialysis, and cardio-pulmonary resuscitation) doesn’t benefit the patient (Alzheimer’s disease, 2003, para. 5 & 6).  Refusing to eat or drink is part of the dying process, which releases endorphins that reduce pain while artificial feeding deprives the patient of much needed personal contact (Alzheimer’s disease, 2003, para. 7-11).

Arenella, C. (2013).  Alzheimer’s disease (and other brain diseases) and hospice care.  American Hospice Foundation.  Retrieved from http://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/17-alzheimers-disease-and-other-brain-diseases-and-hospice-care

End-stage Alzheimer’s patients often suffer from moderate or severe pain, extreme weakness, muscle spasms and contractures, choking and difficulty swallowing, incontinence, inability to empty the bladder and bowels, weight loss, severe agitation and the breakdown of the skin (Arenella, 2013, para. 6).  Thus, hospice care needs to focus on pain and symptom control and to not prolong the dying process (Arenella, 2013, para. 7).

Buckley, J. B. (2013).  People with end-stage Alzheimer’s need more palliative care.  Alzheimer’s. Today’s Caregiver, Retrieved from http://caregiver.com/channels/alz/articles/alzheimers_palliative_care.htm

A study that comparing mortality rates for end-stage Alzheimer’s patients and their cognitively alert peers being treated for either pneumonia or a fractured hip found that Alzheimer’s patients are much more likely to die within six months than their mentally unimpaired counterparts whereupon treatment needs to focus on palliative care rather than attempting invasive testing and treatment (Buckley, 2013, p. 1).   End-stage dementia may be defined as the inability to recognize loved ones, perform activities of daily living, or talk while  repeatedly suffering from infections and complications (Buckley, 2013, p. 1).   Painful diagnostic and therapeutic procedures can be extremely frightening to those who don’t know what is happening to them, although dementia patients received less pain medication than rational geriatric patients.  Consequently, the patient’s comfort should be valued over any life-prolonging measures (Buckley, 2013, p. 2). 

Dementia care practice: Recommendations for professionals working in a home setting. Phase 4. (2009). Alzheimer’s Association.  http://www.alz.org/national/documents/phase_4_home_care_recs.pdf

While dementia patients may not be able to tell caregivers that they are in pain, they may verbalize [or in very late-stage Alzheimer’s] vocalize when a caregiver moves or touches the part of the body part that is in pain.  Since dementia patients have trouble telling others that they are in pain, it becomes increasingly difficult to assess its severity and to treat it.  However, as a patient’s verbal ability declines, he or she is more likely to show suffering through behavioral symptoms (Dementia, 2009, p. 22).

 

Caregivers should assess pain as "the fifth-vital sign", controlling the patient’s quality of life by fitting its relief to the patient’s individual needs, asking where the pain occurs, if it moves to other locations, the type of pain, the cause of pain, its severity, whether it interferes with activities of daily living, and the positive and negative effects of its treatment (Dementia, 2009, p. 23). For non-verbal patients, caregivers should note signs of painful movement—slowness of motion, holding or touching a body part, favoring a particular side of the body, behavioral symptoms, and the patient’s history of dealing with pain (Dementia, 2009, p. 23).  

Patients suffering from pain need to be seen by a professional who can manage its treatment, decreasing discomfort while improving functioning, mood, appetite, sleep patterns, and quality of life.  This requires physicians, nurses, psychiatric social workers, and physical and occupational therapists to work together to come up with solutions that don't require a prescription—positioning, heat and cold treatments, music therapy, and distractions--while considering the side effects of any medications given (Dementia, 2009, p. 23). 

Caregivers can prevent pain through regularly scheduled medication, but they can also ease it by relaxation physical activities, heating pads and ice packs, repositioning, assistive devices, and diversions.  Caregivers should also take note that some pain medications can cause constipation, that they can react with any over-the counter medications that the patient might be taking, and that controlled substances require hard-copy prescriptions for each refill.  While some caregivers worry that opioids hasten death, they ease pain during the dying process (Dementia, 2009, p. 24). 

DeNoon, D. J. (2006, Sep. 22).  Pain as a problem in Alzheimer’s disease:  Undertreated pain plagues patients who hurt but can’t tell.  Alzheimer’s Disease Center. WebMD.  Retrieved from http://www.webmd.com/alzheimers/news/20060922/pain-problem-in-alzheimers-disease

Alzheimer’s patients feel just as much pain as other patients do, or maybe even more, but since it is hard for them to share this information, they receive less pain-killing drugs than their still cognitively intact peers do, according to an Australian study that performed brain scans on Alzheimer’s patients and healthy volunteers (DeNoon, 2006, para. 1-5). These brain scans looked a pain centers in the brain and determined the activity there was just as strong as it was in their healthy contemporaries; moreover, it lasted longer perhaps because these disoriented patients were less able to turn their attention to anything else (DeNoon, 2006, para. 7-9). 

Medical science has often assumed that advanced-stage Alzheimer’s patients don’t feel the same pain other patients do since the Pain and Discomfort Scale (PADS) imperfectly measures it (DeNoon, 2006, para. 12 & 13) so caregivers need to watch their facial expressions and body movements while both waking and sleeping.  Then upon noticing pain, they can attempt to give comfort (DeNoon, 2006, para. 15-18).

Eastman, P. (n. d.).  Protocol pinpoints discomfort in late-stage dementia patients.  AMDA.  Reproduced from Caring for the Ages. (2001, Oct). 2(10). Retrieved from  
 http://www.amda.com/publications/caring/october2001/protocol.cfm?printPage=1&

Because many long-term care patients cannot describe their pain or discomfort, a systematic protocol is necessary to determine first of all whether basic needs are met, checking for such mundane things as rough, itchy clothing, the need for the incontinent to be changed, and wrinkled sheets before deciding to administer a pain medication (Eastman, 2001, para. 1-2, 13).

Hill, C. (2008, May 23). Recognizing pain in late-stage Alzheimer’s disease.  About.com.  Alzheimer’s/Dementia.  Retrieved from http://alzheimers.about.com/od/caregiving/qt/latestagepain.htm

Caregivers have a difficulty determining whether an Alzheimer’s patient is in pain because the disease affects the ability of the patient to explain he or she is uncomfortable.  Accordingly, caregivers come to this conclusion by 1) looking for physical signs--dry or pale gums, mouth sores, pale or flushed skin, vomiting, swelling of any body parts all indicate infection; 2) observing sudden changes in behavior, and 3) observing certain non-verbal behaviors--grimacing, gesturing, and groaning.  All of which call for medical treatment (Hill, 2008, para. 1-5).

Recognizing pain in the Alzheimer’s patient. (2012, Nov. 7). Pain.com.  Retrieved from http://pain.com/library/2012/11/07-recognizing-pain-alzheimers-patient/

Problems result because pain is subjective enough that diagnostic tests cannot truly measure it (Recognizing pain, 2012, para. 2), but behavioral changes, body language, and sounds of moaning and groaning may show the patient is in pain.  Alzheimer’s patients feel as much pain as anybody else, so if medical personnel or family members notice that a patient is in pain, it should be treated (Recognizing pain, 2012, para. 2 & 3).

Sandy. (2011, Feb. 9). Can the person with late-stage Alzheimer’s  or dementia feel pain.  Alzheimer’s Support.  Retrieved from

http://free-alzheimers-support.com/wordpress/2011/02/can-the-person-with-late-stage-alzheimers-or-dementia-feel-pain/

Since late-stage Alzheimer’s and dementia patients lose their ability to talk and have a very short short-term memory, caregivers turn to non-verbal cues to tell if they are in pain.  Thus, the caregiver needs to investigate if the Alzheimer’s patient displays the following symptoms--moaning or groaning, clenched teeth or clamped jaws, and agitated or more irritable than usual behavior (Sandy, 2011, para. 1-4).

Smith, B. (2011, March 27).  Symptoms of late-stage dementia. Livestrong.com. Retrieved from http://www.livestrong.com/article/83233-symptoms-late-stage-dementia/

Losing the ability to talk characterizes late-stage dementia while infections, range-of-motion limitations, skin breakdowns caused by a lack of mobility, incontinence, and the inability to swallow also typify advanced dementia (Smith, 2011, para. 1). As these patients lose the ability to speak, they relate to their environment on the sensory level, responding in music, hugs, massage, and friendly voices while they spend much of the time with their eyes closed (Smith, 2011, para. 2).  Dementia patients who have difficulty chewing and swallowing, need to be fed since swallowing difficulties result in choking, aspiration, and pneumonia (Smith, 2011, para. 3).  Eventually, their gradual loss of skills result in a retro-genesis or back to birth stage where they function much like an infant does.

___________

Pain Management Research  for 
Late-Stage Alzheimer’s
& Frontotemporal Dementia Patients

Gogia, P. P. & Rastogi, N. (2009).  Clinical Alzheimer’s Rehabilitation. New York: Springer Publishing Co., LLC. (Google Books).

Late-stage Alzheimer’s patients cannot determine where their pain fits on a sliding pain-management scale that places the degree of discomfort between one and ten, so health professionals and family members must decide if they are expressing the pain they feel in less obvious ways; for example, disruptive behavior may indicate pain.  

Medical science can control pain not only through analgesic drugs but also through non-pharmacological strategies, using physical therapy and passive range-of-motion exercises in very late-stage dementia patients.  Those patients who can still understand instructions may also benefit from mental imagery, hypnosis and relaxation techniques, stress anxiety counseling, and spiritual support.  Although older patients are more likely to suffer from the side effects of pain medication, that does not mean anyone should die—or live with—pain (Gogia, 2009, pp. 304-305).

Scherder, E. Costerman, J., & Swaab, D. et al. (2005, Feb. 26).  Recent developments in pain in dementia. BMJ. 330(7489), 461–464. doi:  10.1136/bmj.330.7489.461.  Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC549660/

 

Inadequacy of pain assessment leads to under treatment of pain in severe dementia since pain assessment usually depends upon the patient’s ability to communicate the sensory discriminative and motivational/affective aspects of pain—the last of which is most particularly necessary to detect it (Scherder, 2005, para. 1 & 2). 

Summary Points: 

• Under treatment of pain increases as dementia becomes more severe;

• Clinical studies should distinguish between the sensory-discriminatory and motivational aspects of pain;

• While self-reporting scales focus on a pain’s intensity, observational scales asses its affective aspects;

• Observational measurement of pain should become a permanent part of pain management in dementia patients regardless of the patient’s cognitive status.

(Scherder, 2004, para. 4)

Under Treatment of Pain in Dementia:

Advanced dementia patients with hip fractures received significantly less opioid analgesics than patients with their memories intact (Scherder, 2004, para. 5).

Assessment of the Sensory-discriminative and Motivational-effective Aspects of Pain:

Some researchers have added prerequisites for using pain scales that require patients to describe the degree of their own discomfort when evaluating dementia patients, for example, drawing a clock face (Scherder, 2004, para. 6).

The task of assessing patients who cannot communicate means caregivers must observe physiological  and physical signs, such as breathing frequency and facial expressions, while it places medical personnel at a disadvantage since patients suffering from end-stage dementia sometimes do not show pain in the same way other patients do (Scherder, 2004, para. 7).

Snow, T. (2012, Dec. 12).  Late stage Alzheimer’s dementia care: How to recognize pain.  [Video]. Part I (3:37 minutes) and Part II (3:37 minutes). Retrieved from http://www.youtube.com/watch?v=9kSjHtHSJCw

Snow describes an ingenuous method of determining whether a late-stage Alzheimer’s patient is in pain.  The caregiver needs to hold the patient’s dominate hand while examining the body.  The hand will jerk a little as an automatic movement if that part of the patient’s body is in pain.

Stori, M., Dal Santo, P., & Zanolin, M. E. (2008, Oct.-Dec.).  [A comparison study between two pain assessment scales for hospitalized and cognitively-impaired patients with advanced dementia]. Professioni infermieristiche. 61(4), 210-215. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/19250617 [Abstract only].

Results from a comparison of the PAINAD and ABBEY pain-assessment scales in 30 residential geriatric patients with vascular dementia or late-stage Alzheimer’s confirmed that both assessment techniques give equivalent results. 

 Postscript: A Personal Note

Although Mother had trouble swallowing the last week of her life, she wasn't given any morphine until around noon of her dying day, March 19, 2014.  She might not have received any medication at this time if I didn’t make a hurried trip to the nurse’s station, announcing that her facial expressions showed that she was in great pain. That’s not to say that Mother was so doped up that she was unconscious, for she stayed awake and alert to the end.  Thus, if this story has any moral, it should be that family members need to be there to ask for medications when needed.  

Yes, dementia patients need loving care, but in the end, they also need the help of professionals well-versed in pain management skills as well as attentive family members.

The medial links furnished on this Web page represent the opinions of their authors, so they complement—not substitute—for a physician's advice.