Caring Collaborative| Volume 24, ISSUE 2, P5, March 2023

Assessing Pain Among Individuals Living With Dementia

      During the early days of the COVID-19 pandemic, I received a telephone call from a caregiver in an assisted living facility with a request to restart quetiapine for a male resident living with severe dementia and type 2 diabetes mellitus. This resident had been successfully tapered off quetiapine nine months earlier. Although he had a history of psychotic symptoms and physical aggression, he had been both medically and behaviorally stable.
      His ability to communicate verbally was limited. In the past week, he had become more verbally irritable with staff and peers and was resistive to care. In the past two days he moaned intermittently and would kick his shoe off and throw it at caregivers or other residents as they walked by him. He was spending more time in his wheelchair and was resisting walking even short distances to the dining room or bathroom.
      Each of these symptoms was new for the resident, and none were consistent with his past behavioral symptoms. Given this presentation of symptoms, I asked the staff to check a set of vital signs and to do a finger stick to check his blood sugar.
      The resident’s vital signs were normal, but he had an elevated glucose of 204 before lunch, which was high for him. He had no fever, chills, lethargy, cough, or change in his urination. I arranged a visit with him the next day and did not start the quetiapine.
      During this visit, a foot examination revealed an ingrown toenail on his large right toe with cellulitis of his foot. He was treated for the infection and acute pain. We kept his shoes off and used soft slippers or socks until his podiatrist could remedy the ingrown toenail.
      It would have been inappropriate to prescribe the quetiapine because his behavioral symptoms (shoe removal and throwing, irritability, and functional decline) reflected acute pain.
      I have used this case study with the adult gerontology primary care nurse practitioner students to teach the importance of completing a thorough history and physical examination, particularly with older adults with dementia who cannot reliably report their pain.

      The Prevalence and Impact of Physical Pain on Individuals Living With Dementia

      It is estimated that 50% of individuals living with dementia experience physical pain routinely (Alzheimers Dement 2018;4:661–668; BMC Geriatr 2015;15:29). In post-acute and long-term care settings, the prevalence of pain among patients with dementia is 60% to 80% (Nat Rev Neuro 2012;8:264–274).
      To make matters worse, pain is typically underrecognized and undertreated in this population. In a study among older adults with dementia receiving home care services, a diagnosis of dementia was associated with a lower likelihood of receiving any analgesic pain medication even though its use is associated with improved physical function (J Am Geriatr Soc 2021;69:3545–3556). Additionally, in a sample of hospitalized older adults with dementia who exhibited pain, 40% of the participants received no pain medication during their admission (Pain Manag Nurs 2021;22:158–163).
      The impact of pain on older adults with dementia is associated with several negative health outcomes. Individuals with dementia admitted to a skilled nursing facility and experiencing acute or worsening chronic pain were more likely to experience delirium, functional disability, long-term care placement, and death compared with patients who did not experience increased pain levels (J Am Med Dir Assoc 2015;16:37–40). Pain has also been associated with sleep disturbance and decreased quality of life among older adults with dementia living in the community (Geriatr Nurs 2014;35:394–398).
      Given the high likelihood of undertreated pain and the negative outcomes associated with pain among individuals with dementia, health care providers need to do better in the assessment of pain in this population.

      Pain Assessment for Individuals Living With Dementia

      Subjective report measures and observational measures of pain used with older adults with dementia are not consistently reliable, and they may either underestimate or overestimate pain (J Pain 2011;12:S3–S13). Individuals with mild and moderate dementia frequently can reliably report the presence or absence of pain in the moment, but their retrospective reports of pain and descriptions of pain intensity are less reliable.
      For patients with dementia who cannot self-report pain, there is no single best measure of pain; however, the use of observational measures that identify behavioral symptoms associated with pain is supported by AMDA – The Society for Post-Acute and Long-Term Care Medicine and the American Geriatrics Society for individuals with advanced dementia.
      Observational measures of pain designed for individuals with advanced dementia typically include behavioral indicators associated with pain, such as grimacing or strained facial expressions, repeated vocalizations/groaning, repetitive body movements, aggressive behaviors, sleep pattern disturbance, and changes in mental status (J Am Geriatr 2002;50:S205–S224). Unfortunately, these behavioral symptoms are also commonly associated with other geriatric syndromes, such as delirium, and behavioral and psychological symptoms of dementia. Therefore, observational measures of pain for individuals with dementia tend to have high sensitivity but lower levels of specificity.
      The included table describes the commonly used observational measures of pain designed for individuals with advanced dementia who cannot self-report pain. These instruments have evidence of validity and reliability, are available in multiple languages, assess similar pain behaviors, and have been tested in PALTC settings.
      The Pain Assessment Checklist for Seniors With Limited Ability to Communicate (PACSLAC) provides the most comprehensive assessment (60 items). The Pain Assessment in Advanced Dementia (PAINAD) and the Mobilization Observation Behavior Intensity Dementia Pain Scale 2 (MOBID 2) have been routinely integrated into clinical practice because they are brief, easy to administer, and can be used for pain screening.
      Scales and measures provide data that can help to guide, but not decide, our treatment decisions. Instruments designed to measure pain by assessing behavioral symptoms need to be used in addition to familiarity with the patient, clinical experience with the population, clinical appraisal, and knowledge of the differential diagnoses of pain (Geriatrics 2021;6[4]:101).
      Please share with us how you assess pain in your patients with dementia. In the April 2023 issue of Caring for the Ages, I will address nonpharmacological and pharmacological treatments of pain for older adults with dementia.
      Dr. Galik is editor in chief of Caring for the Ages. The views the editor expresses are her own and not necessarily those of the Society or any other entity. Dr. Galik is a nurse practitioner in LTC- and community-based settings through a clinical practice with Sheppard Pratt Health System. She is a professor at the University of Maryland School of Nursing, where she teaches and conducts research to improve care practices for older adults with dementia and their caregivers in long-term care. She may be reached at .

      Related Podcast

      March 3, 2023

      March 2023 - Pain Management

      In this episode, Dr. Karl Steinberg and Dr. Elizabeth Galik discuss our March issue, with includes a special section on pain in post-acute and long-term care settings. Learn about overall insights into pain management, how to assess pain among individuals with dementia, and the importance of connecting with patients' subjective experience of pain. Drs. Steinberg and Galik also discuss a provocative article arguing against universal supplementation of vitamin D in long-term are.

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