Impact of Pain and Discomfort on the Lives of Cognitively Impaired Older Adults and Their Informal Caregivers

This qualitative study explored the impact of pain and discomfort on the lives of cognitively impaired older adults and their caregivers from the caregiver perspective. Forty-three individuals of age 19+, who identified themselves as primary caregiver to a chronically or seriously ill older adult (age 50+) with cognitive impairment, such as Alzheimer’s Disease and Related Dementia, were recruited at various community settings. Individual, face-to-face interviews were conducted to ask participants how they thought their care-recipient’s pain and discomfort affected the care-recipient’s and the caregiver’s life respectively. Inductive, thematic analysis of interview transcripts revealed several key themes: compromised mobility, limited social interaction or activities, and depressive symptoms in both care-recipients and caregivers; aggravated cognitive decline in care-recipients; and poorer physical health in caregivers. Participants wanted more information on the disease trajectory and available services, particularly home-based therapies and social activities for care-recipients, which provides future program/practice implications.