Pain in persons with dementia and the direct and indirect impacts on caregiver burden

Natalie G. Regier, Janiece L. Taylor, Sarah L. Szanton, Patricia A. Parmelee, Nancy Perrin, Minhui Liu, Emerald Jenkins, Nancy A. Hodgson, Laura N. Gitlin

Research output: Contribution to journalArticlepeer-review


Objectives: Unresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship. Method: We examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM). Results: Model fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden. Conclusion: Caregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.

Original languageEnglish (US)
Pages (from-to)366-371
Number of pages6
JournalGeriatric Nursing
Issue number2
StatePublished - Mar 1 2021


  • Caregiver burden
  • Caregiver upset
  • Dementia
  • Neuropsychiatric symptoms
  • Pain

ASJC Scopus subject areas

  • Gerontology


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