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Severe Pain Going Unrecognized In Seniors With Dementia

Severe Pain Going Unrecognized in Seniors with Dementia

Do nearly a third of severe pain cases go unrecognized when seniors have Alzheimer’s disease and related dementia? A first-of-its-kind study out of the University of Rochester recently reported data strongly suggesting this.1

Pain in Dementia

Pain contributes to the psychiatric symptoms of dementia. Research connects it with aggression, agitation, hallucinations, delusions, and depression.2,3 Additionally, studies show negative physical effects from pain: increased hospitalization risk, impaired physical function, and increased mortality.4-6 

Relevance of Dementia to Home Health

The ability to identify and manage pain among patients with dementia bears particular importance in home health. For instance, nearly two thirds of Americans age 65+ and with moderately severe dementia receive care at home.7 Resultantly, one third of Medicare beneficiaries who receive home health have cognitive impairment and Alzheimer’s disease & related dementia (ADRD).8   

Severe Pain Going Unrecognized in Home Health Patients with Dementia

In the current study, Jinjiao Wang, PhD, RN and colleagues examined the records of over 6,000 home health patients from a large home health agency in New York. All home health agencies complete Medicare’s Outcome and Assessment Information Set (OASIS) at admission and discharge. One question asks how frequently pain interferes with activity or movement. When patients answered, “all of the time,” the researchers categorized that as severe pain. The questionnaires proved less likely to report severe pain for patients with ADRD than for others (16.4% vs 26.6%, p < .001). Given that the numbers were adjusted for health status, caregiver support levels, and home health intensity, Wang et al. cited under-recognition of pain as the likely cause for the difference in reporting.

Severe Pain Going Unrecognized in Hospital and Nursing Home Patients with Dementia

This apparent problem is not unique to home health. Similar studies in nursing homes and hospitals find similar outcomes.9,10 It is likely that for our seniors with dementia, pain goes unrecognized in family caregiving settings and throughout the healthcare spectrum.

Improving the Recognition of Severe Pain Among Patients with Dementia

Authors suggest that there is room for improvement through simple modifications to exam procedures. Exams for patients with dementia often involve largely speaking with the family caregiver. Clinicians should try to obtain self-report and direct-assessment data of pain at initial assessment and periodically throughout care.11 Moreover, tools such as the Pain Assessment in Advanced Dementia (PAINAD) scale can be used to standardize, quantify, and rate pain assessments. Importantly, tools such as these can guide clinicians in observation techniques that can improve the detection of pain among patients with dementia. Family caregivers can try free tools such as these themselves. Moreover, they can prompt their clinicians to use a pain assessment scale specifically designed for patients with dementia.


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