title: Caregiving for a loved one with dementia at the end of life: an emergent theory of rediscovering.
abstract: Millions face the challenges of caregiving for a loved one with dementia. A classic Glaserian grounded theory methodology was used to discover the problem that caregivers of individuals with dementia face at the end of life and how they attempt to resolve that problem. Data were collected from a theoretical sample of 101 participants through in-person interviews, online interviews, book and blog memoirs of caregivers, and participant observation. Constant comparative method revealed a basic social psychological problem of role entrapment. Caregivers attempt to resolve this problem through a 5-stage basic social psychological process of rediscovering including missing the past, sacrificing self, yearning for escape, reclaiming identity, and finding joy. Health care professionals can support caregivers through this journey by validating, preparing caregivers for future stages, and encouraging natural coping strategies identified in this process. This study provides a substantive theory that may serve as a framework for future studies.
authors.affiliation: College of Nursing and Health Sciences, University of Vermont, Burlington, VT 05405, USA lforanlewis@gmail.com.
authors.forename: Laura Foran
authors.initials: LF
authors.lastname: Lewis
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000451:nursing; D005260:Female; D057180:Frontotemporal Dementia / Q000451:nursing*; D066296:Grounded Theory; D006801:Humans; D020961:Lewy Body Disease / Q000451:nursing*; D008297:Male; D008875:Middle Aged; D011582:Psychological Theory; D036301:Qualitative Research; D012380:Role; D013727:Terminal Care / Q000523:psychology*
keywords: Alzheimer’s disease; caregiver; dementia; end of life; grounded theory; qualitative research