The combination of chronic pain and dementia is difficult to manage. While advancing dementia can render an elder heartbreakingly vulnerable, chronic pain that can’t be expressed in words by the person with dementia multiplies the difficulty of compassionate care.
Since dementia can leave people unable to verbally express the fact that they are in pain, they may scream, kick or hit. They may act out aggressively because they don’t understand why they are in pain. They just want it gone. If caregivers misinterpret the reason for this "acting out," there is a chance that the elder will not receive proper pain management for his or her chronic or acute pain.
Over a period of 15 years, I visited several of my loved ones nearly daily in a nearby nursing home. Throughout those years, I occasionally heard residents with dementia cry out in what could be either pain or mental terror. The staff of this nursing home was excellent and they always did their best to calm the person and determine whether some physical ailment needed treating or if hallucinations or psychological fear was causing the terrified screams.
Detecting the source of the resident’s distress was no easy task. However, if the person suffered not only from dementia but from known chronic pain, the staff would attempt to relieve with medication any pain the person may feel as well as provide the soothing hands care required for relieving emotional stress.
We absolutely do not want to over medicate our elders who have dementia. Between the possibly dangerous side effects of many medications and the fact that some medications can put the elder in a drugged fog, good nursing homes are cautious about medications. Yet, we don’t want people to suffer from unrelieved physical pain simply because they have dementia and are unable to tell their caregivers that they are in pain. If relief is needed, caregivers - whether professionals or family members - are responsible to provide that relief when possible.
A caregiver’s helplessness
My dad lived in the same facility for a decade after brain surgery meant to correct problems resulting from a World War II brain injury left him with severe dementia. Along with his dementia, he had painful arthritic spurs that dug into his spinal cord as well as unrelated neurological pain for which he wore a skin patch to deliver a prescription pain medication.
Even though he was medicated for pain, Dad would occasionally cry out in agony for long periods of time. Since he also suffered from specific anxieties and generalized fear, we weren’t always sure what was causing his distress. When Dad experienced these episodes, the attentive staff would work hard to comfort him. I’d often beg them from the sidelines to relieve his suffering with additional pain and/or anti-anxiety medication. I just couldn’t stand his suffering.
Eventually, of course, the episodes would be brought under control, generally by administering a combination of soothing, hands-on care with appropriate medication. However, those hard times with dad remain strong in my memory.
Sometimes we have to live with the unknown. As the daughter of a man who occasionally suffered from these baffling episodes, I preferred the risk of medicating him for his chronic pain as well as his acute anxiety to knowing he was in agony, whether from physical or mental suffering. I wanted to stop his pain, as well as my own suffering and feeling of helplessness. For all reasons, I wanted Dad treated.
People who cannot verbalize their pain need to be watched closely and treated appropriately. Sometimes, "appropriate" is a challenging judgment call. When a person with dementia is suffering, we need to cover all of the bases. If treating them for physical pain while we handle their psychic issues is what needs to be done, then we need to double up and treat both potential problems. If we must risk erring on the side of overtreatment, I would take that risk.
A researcher is looking for people to participate in a study about the mental and emotional effects of chronic pain. The link above will take you to the study information if you’d like to investigate the opportunity.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.