Dementia Family Caregivers’ Pain Assessments and Characteristics of the Person with Dementia and Caregivers
Boon, Jeffrey
0009-0003-7790-7153
:
2023-03-17
Abstract
Background: Like other older adults, people living with dementia (PLWD) experience pain. However, due to changes associated with dementia, reporting on their own pain becomes more difficult, and PLWD rely more on family caregivers to assess their pain. Further description of caregivers’ pain assessments for PLWD in a community setting is needed to build a foundation for future research and intervention.
Purpose: To describe how frequently family caregivers of PLWD use different elements of pain assessment. To describe associations of characteristics of the family caregivers and PLWD with how frequently family caregivers use these elements of pain assessment.
Methods: A Dementia Family Caregiver Pain Assessment Survey (DFCPAS) was developed and validated. A sample of family caregivers of PLWD was recruited online. Caregivers reported demographics about themselves and the PWLD for whom they care and completed the DFCPAS. Caregiver characteristics were measured using the Revised Scale for Caregiving Self-Efficacy, Center for Epidemiologic Studies Depression Scale, and Health Literacy Skills Instrument-Short Form. Characteristics of PLWD were measured using the Cohen-Mansfield Agitation Inventory, Short Form of the Informant Questionnaire on Cognitive Decline in the Elderly, and Quick Dementia Rating System. Univariate statistics were used to determine associations of characteristics of the family caregivers and PLWD with DFCPAS items.
Results: A sample of family caregivers (N=48) reported high median percent use of observing pain behaviors (98.0%), rechecking after intervention (96.0%), seeking self-report (91.0%), and seeking causes of pain (83.5%). Self-efficacy for obtaining respite was most associated with asking others if they have noticed behavior change (rho=.41, p=.007), asking others if PLWD is in pain (rho=.39, p=.010), rechecking (rho=.38, p=.013). Self-efficacy for responding to disruptive patient behaviors was most associated with rechecking after intervention (rho=.56, p<.001), asking others if they noticed behavior change (rho=.54, p<.001), and seeking causes of pain (rho=.50, p<.001). Worse cognitive function was associated with rechecking after intervention (rho=.36, p=.013).
Conclusion: Family caregivers of PLWD use multiple elements of pain assessment with high frequency. Caregiving self-efficacy is associated with higher use of these pain assessment elements. Further description of pain assessments by family caregivers of PLWD is needed.