Caregiver Perspectives on Cancer Screening for Persons with Dementia: “Why Put Them Through It?”

Abstract

Objectives: To describe the perspectives of family caregivers toward stopping cancer screening tests for their relatives with dementia and identify opportunities to reduce harmful or unnecessary screening. Design: Focus group study. Setting: Alzheimer's Association support groups for family members of individuals with dementia. Participants: Four focus groups including 32 caregivers (25 female; 24 white, 7 African American, one American/Indian; mean age 65.5, range 49-85). Measurements: Focus group transcripts were transcribed and analyzed using methods of grounded theory. Results: Caregivers considered decisions to stop cancer screening in terms of quality of life and burden on the patient and caregiver. Many described having to intervene in the patient's care to stop unnecessary or harmful screening, and others met resistance when they advocated for stopping. Physicians varied widely in their knowledge of dementia care and willingness to consider cessation of screening. Conclusion: Many family caregivers wish to stop cancer screening tests as dementia progresses and are relieved when physicians bring it up. Caregivers are open to discussions of screening cessation that focus on quality of life, burdens, and benefits. Interventions are needed to increase caregiver and clinician discussion of screening cessation and to increase clinician awareness of the need to reconsider cancer screening in individuals with dementia.