Moving to New Settings: Pilot Study of Families' Perceptions of Professional Caregivers' Pain Management in Persons with Dementia

Buffum, Martha D., Haberfelde, Mimi, Journal of Rehabilitation Research & Development

INTRODUCTION

Persons with advanced or severe dementia often have pain that is underrecognized and undertreated [1-2]. While these patients' pain management issues are multifaceted and complex, one major problem is that these patients cannot clearly communicate their needs and, consequently, they receive fewer analgesics than cognitively intact persons with the same conditions [3-4]. Several assessment methods have been developed in the past decade, yet pain assessment and management problems persist in all care settings [5-6]. With the establishment of pain as the fifth vital sign, Department of Veterans Affairs (VA) providers have attempted to incorporate measures for evaluating pain in patients who cannot communicate [7-8]. Despite tool development and VA National Pain Strategy concept articles, no standard or consistent measurement exists across facilities within or outside the VA.

Pain assessment in this vulnerable population is further complicated when patients are admitted to, moved from, or transferred between levels of care, such as from the home or nursing home to the hospital. Qualitative data suggest that the family caregivers who are most familiar with the patient with dementia are in a position to inform healthcare providers about the patient's history, idiosyncratic expressions, and specific needs [9]. To date, the use of informal caregivers as resources for pain management information when patients move between care settings has not been explored. Hence, the purpose of the current study was to learn family caregivers' perspectives on pain management after their family members with dementia were admitted to unfamiliar healthcare environments.

BACKGROUND

Pain management includes assessment; development, implementation, and evaluation of a treatment plan; and ongoing reassessment of pain. Pain in patients with advanced dementia is defined as manifestations of discomfort that may be expressed in displays of behavior, verbal and nonverbal expressions, motor movements, and changes in the individual's usual behavior. While discomfort can be caused by other states, such as thirst, hunger, frustration, loneliness, boredom, constipation, infection, or other conditions and situations, it may be considered pain when a known painful condition exists or a known painful procedure has been performed. That is, what causes pain in cognitively intact persons is likely to cause pain in cognitively impaired persons; hence, the pain could be acute or chronic or both. Information exchange among staff about pain in patients with dementia is often overshadowed by more evident or visible problems. When patients move to new care settings, communicating about pain management poses additional challenges to the continuity of care.

Past research has focused on pain assessment and treatment issues in different types of dementia (and is mentioned in a review article in this issue [10]). Prior studies have noted differences in pain ratings between patients and their family caregivers. Krulewitch and colleagues noted that of 104 patient-caregiver dyads, onethird gave pain ratings that did not correlate [11]. Specifically, 16 patients reported moderate pain but their caregivers rated them as having minimal or no pain and 18 patients reported minimal or no pain but their caregivers rated them as having severe pain. Another one-third of patients were unable to rate their pain because of severe cognitive impairments. These investigators highlight the need for training of family caregivers in standardized pain assessment with observational measures [11].

Other authors have discussed the need to teach both formal (healthcare) and informal (family or nontrained) caregivers about pain assessment in their patients with cognitive and communication impairments. Snow and colleagues described distinct strategies that care providers can use to elicit pain assessment information from all important persons (e.g., nursing staff, family caregivers). Their method includes the saying "No BODIES in Pain!," where B asks for pain-related behaviors, O asks for how often the behaviors occur, D asks for duration of pain as indicated by the behaviors, I asks for intensity of pain as indicated by the behaviors, E asks for effectiveness of pain treatment, and S asks what stops the behaviors [6].

Literature specifically for informal caregivers discusses pain management in persons with dementia and emphasizes the importance of sharing information with healthcare professionals. For example, one newsletter provides descriptors from a pain assessment tool to help caregivers learn to identify and describe possible pain [12]. These descriptors are from Feldt's Checklist of Nonverbal Pain Indicators [13] and include vocal complaints that express pain, such as moaning, groaning, grunting, crying, gasping; facial grimacing or wincing; bracing and holding onto nearby equipment; restlessness; rubbing; and verbal remarks such as "ouch" or "stop, that hurts." Another publication for informal caregivers, The Family Caregiver Alliance newsletter, documents one family caregiver's experience interacting with professionals. This particular caregiver describes insisting on pain management after recognizing and describing signs of pain in the family member with dementia [14].

Communicating information about pain management between family caregivers and professional staff at receiving facilities is a major research gap. No studies to date have examined the role that family caregivers play when patients with dementia move to new and …

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Publication information: Article title: Moving to New Settings: Pilot Study of Families' Perceptions of Professional Caregivers' Pain Management in Persons with Dementia. Contributors: Buffum, Martha D. - Author, Haberfelde, Mimi - Author. Journal title: Journal of Rehabilitation Research & Development. Volume: 44. Issue: 2 Publication date: March-April 2007. Page number: 295+. © 2006 Department of Veterans Affairs. COPYRIGHT 2007 Gale Group.

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