A comprehensive, stage-sensitive model of grief in dementia caregiving

Gerontologist. 2001 Oct;41(5):658-70. doi: 10.1093/geront/41.5.658.


Purpose: Grief is an overlooked but important element of the caregiver experience. This study defines a model of caregiver grief to aid in clinical intervention and to support further research.

Design and methods: This study addressed the grief responses of 87 spouse and adult-child caregivers of patients with progressive dementia representing mild, moderate, severe, and postdeath. Questionnaire data and qualitative findings from 16 semistructured focus group interviews provide the basis for a descriptive model of anticipatory grief in dementia caregiving.

Results: Significant differences emerged between spouse and adult-child caregiver groups as a whole and as a function of Clinical Dementia Rating impairment level. Caregiver grief was found to fluctuate between intellectual, affective, and existential poles depending upon current care demands and expectations.

Implications: These findings suggest that anticipatory grief in dementia caregiving is "real" grief, equivalent in intensity and breadth to death-related grief.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Alzheimer Disease / therapy*
  • Analysis of Variance
  • Caregivers / psychology*
  • Disease Progression
  • Female
  • Grief*
  • Humans
  • Male
  • Middle Aged
  • Parent-Child Relations
  • Personality Inventory
  • Psychometrics
  • Spouses
  • Stress, Psychological / etiology
  • Surveys and Questionnaires