title: The Meanings African American Caregivers Ascribe to Dementia-Related Changes: The Paradox of Hanging on to Loss.
abstract: Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients.
  
  
  
  Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session.
  
  
  
  Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings.
  
  
  
  The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping.
authors.affiliation: Layton Aging and Alzheimer's Disease Center, Portland, Oregon. lindauer@ohsu.edu.
authors.forename: Allison
authors.initials: A
authors.lastname: Lindauer
authors.affiliation: Betty Irene Moore School of Nursing, University of California, Davis, Sacramento.
authors.forename: Theresa A
authors.initials: TA
authors.lastname: Harvath
authors.affiliation: Hartford Center of Gerontological Nursing Excellence at Oregon Health and Science University, School of Nursing, Oregon Health and Science University, Portland.
authors.forename: Patricia H
authors.initials: PH
authors.lastname: Berry
authors.affiliation: School of Nursing, Oregon Health and Science University, Portland.
authors.forename: Peggy
authors.initials: P
authors.lastname: Wros
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health / Q000208:ethnology*; D017028:Caregivers; D003657:Decision Making; D003704:Dementia / Q000451:nursing*; D005260:Female; D066297:Hermeneutics; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research
keywords: African American older adults; Caregiving—informal; Dementia; Humanities; Qualitative research methods