Calming Dementia Patients

Massage is one approach to pain relief that shows promise for patients with dementia. (Ernst Peters, The Ledger/Associated Press)

Chronic pain is common among people with dementia but often goes undetected and needs to be better managed, a Canadian medical journal editor says.

Pain in older people is often due to degenerative disease of the joints and spine, fractures and cancer. The pain is associated with impaired function, disturbed sleep, poor appetite and increased use of the health-care system, said Dr. Ken Flegel, senior editor of the Canadian Medical Association Journal.

Flegel said up to half of people with dementia have chronic pain.

But people with dementia are less able to tolerate opioids and other pain relievers and a dose and frequency that will relieve pain, in part because of atrophy to the body, brain and less efficient liver and kidney function.

"It seems clear that meeting the need for pain relief in people with dementia will require more than skilled care at the bedside," Flegel concludes.

"A person with dementia may be losing cognitive ability, but some aspects of personhood must still be respected — namely dignity, life-story and family connection. To this list we should add perception of pain and suffering."

Earlier this month, CMAJ published a review of studies involving more than 1,800 people with dementia and their caregivers in countries such as the United Kingdom, United States, Canada and Australia.

Dr. Dallas Seitz of the psychiatry department at Queen's University in Kingston, Ont. and his co-authors said they found five themes:

  • Seeking a diagnosis. For example a patient said "I couldn't even draw the house … even a child could do that. It is embarrassing. Maybe I would have done better at home … if I wasn't so nervous."
  • Accessing supports and services. For example a caregiver said they were told to "'look it up on the internet,' which wasn't a very helpful remark - I wanted support, human support."
  • Addressing information needs. A patient requested "I would like it in layman's language."
  • Disease management. A caregiver reported "The doctors with whom our mother consulted knew very little about dementia. They simply told us that her presentations were a form of senility."
  • Communication and attitudes of health care providers. For example, caregivers reported feeling that their concerns weren't taken seriously, as reflected in this comment: "The doctor was not even aware of the memory loss - even though I mentioned it to him many times."

Seitz's team made several suggestions to improve the health care experience of patients and their caregivers, such as introducing dementia care managers in primary care teams and offering pschoeducation for caregivers such as through Alzheimer's societies to try to reduce caregiver burden and depression and delay admission to long-term care facilities.

The editorial notes that the very elderly, residents of long-term care homes and people with dementia are usually excluded from randomized trials testing medications. Other approaches such as physical and behavioural therapy, massage and nerve blocks show promise and need more study, Flegel said.