Conceptions of Dementia in a Multiethnic Sample of Family Caregivers

Understanding variability in conceptions of dementia in multiethnic populations is important to improve care and guide research. The objectives of this study were to describe caregiver conceptions of dementia using a previously developed typology and to examine the correlates of conceptions of dementia in a multiethnic sample. This is a cross‐sectional study conducted in Boston and the San Francisco Bay area. Participants were a convenience sample of 92 family dementia caregivers from four ethnic/racial groups: African‐American, Anglo European‐American, Asian‐American, and Latino. In‐depth, qualitative interviews explored the caregivers' ideas about the nature and cause of dementia (i.e., explanatory models). Explanatory models of caregivers were categorized as biomedical, folk, or mixed (folk/biomedical). Quantitative analyses examined the association between ethnicity and other caregiver characteristics, and explanatory model type. Overall, 54% of caregivers, including 41% of Anglo European Americans, held explanatory models that combined folk and biomedical elements (i.e., mixed models). For example, many families attributed Alzheimer's disease and related dementias to psychosocial stress or normal aging. Ethnicity, lower education, and sex were associated with explanatory model type in bivariate analyses. In multiple logistic regression analysis, minority caregivers (P<.02) and those with less formal education (P<.02) were more likely to hold mixed or folk models of dementia. Although minority and nonminority caregivers often incorporated folk models into their understanding of dementia, this was more common in minority caregivers and those with less formal education. Further research on cross‐ethnic differences in a larger, more‐representative sample is needed.

[1]  J. Betancourt Cultural competence--marginal or mainstream movement? , 2004, The New England journal of medicine.

[2]  C. Franz,et al.  Pathways to Dementia Diagnosis: Evidence for Cross-Ethnic Differences , 2004, Alzheimer disease and associated disorders.

[3]  Liat Ayalon,et al.  Knowledge of Alzheimer's disease in four ethnic groups of older adults , 2004, International journal of geriatric psychiatry.

[4]  M. Wallhagen,et al.  Curricular Framework: Core Competencies in Multicultural Geriatric Care , 2004, Journal of the American Geriatrics Society.

[5]  R. Green,et al.  Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease , 2003, Alzheimer disease and associated disorders.

[6]  Peggye Dilworth-Anderson,et al.  Issues of race, ethnicity, and culture in caregiving research: a 20-year review (1980-2000). , 2002, The Gerontologist.

[7]  M. Janevic,et al.  Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. , 2001, The Gerontologist.

[8]  P. Werner Correlates of family caregivers' knowledge about Alzheimer's disease , 2001, International journal of geriatric psychiatry.

[9]  Sue E. Levkoff,et al.  Stress and Service Use Among Minority Caregivers to Elders with Dementia , 2000 .

[10]  S. Levkoff,et al.  Introduction: Exploring the Relationships Among Aging, Ethnicity, and Family Dementia Caregiving , 1999, Culture, medicine and psychiatry.

[11]  S. Levkoff,et al.  Constructing Alzheimer's: Narratives of Lost Identities, Confusion and Loneliness in Old Age , 1999, Culture, medicine and psychiatry.

[12]  K. Braun,et al.  Perceptions of dementia, caregiving, and help seeking among Asian and Pacific Islander Americans. , 1998, Health & social work.

[13]  Helen Cook Gait,et al.  Caregiving Across Cultures: Working With Dementing Illness And Ethnically Diverse Populations , 1997 .

[14]  R. Angel,et al.  Panel V: Adaptive Health Behaviors Among Ethnic Minorities , 1995 .

[15]  L. Pachter Culture and clinical care. Folk illness beliefs and behaviors and their implications for health care delivery. , 1994, JAMA.

[16]  J. Henderson,et al.  Ethnocultural Themes in Caregiving to Alzheimer's Disease Patients in Hispanic Families , 1992 .

[17]  H. Young,et al.  Predictors of burden in spouse caregivers of individuals with Alzheimer's disease. , 1991, Psychology and aging.

[18]  G. M. Miyashiro,et al.  [The illness narratives: suffering, healing and the human condition]. , 1991, Cadernos de saude publica.

[19]  A. Gaines Alzheimer's disease in the context of black (Southern) culture. , 1988, Health matrix (Cleveland, Ohio : 1991).

[20]  A. Kleinman,et al.  Culture and depression. , 1986, The New England journal of medicine.

[21]  B. Chenoweth,et al.  Dementia: the experience of family caregivers. , 1986, The Gerontologist.

[22]  D. gallagher-Thompson,et al.  Innovative interventions to reduce dementia caregiver distress : a clinical guide , 2003 .

[23]  L. Hinton Improving Care for Ethnic Minority Elderly and Their Family Caregivers Across the Spectrum of Dementia Severity , 2002, Alzheimer disease and associated disorders.

[24]  T. Radebaugh,et al.  Cultural diversity and Alzheimer disease: introduction. , 2002, Alzheimer Disease and Associated Disorders.

[25]  H. Hazuda Minority issues in Alzheimer disease outcomes research. , 1997, Alzheimer disease and associated disorders.