Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Family members provide the bulk of care to persons with dementia with some help from community-based services. Despite considerable strain, caregivers have low use of community services even when such services are available and affordable. Thus, developing a better understanding into why and under what circumstances caregivers use services is crucial for designing effective outreach strategies that enable caregivers to use services and maintain the person with dementia in the community for as long as possible.

How caregivers decide to use relevant services and what services they choose is not clearly understood. Equally unclear is the impact of culture (ethnicity and social class membership) on attitudes towards service use. Using a transcultural perspective this research examines similarities and differences in the ways in which social networks of ethnically and economically diverse caregivers influence awareness of and attitudes towards community services for persons with dementia.

DESIGN: The data for this study are derived from in-depth, semi-structured interviews with 15 caregivers of dementia patients receiving care at two geriatrics clinics in a large mid-western city. Caregivers were sampled purposively to reflect diversity in ethnicity (Caucasian & African-American) and socioeconomic status (SES). Respondents were asked to describe: 1) whether they perceived a need for specific community services; 2) how they obtained information for these services, and 3) what influenced their decision to use these services. Audio-taped data were transcribed, coded descriptively, and examined for underlying patterns. Using a method of comparative analysis across cases, data were then ordered on the basis of educational status of the caregiver.

RESULTS: 60% of the sample was African American and 40% Caucasian. 74% had a college education or more and 26% had a high school education or less. Thematic analyses suggest that: 1) Caregivers were generally aware of services. 2) Patterns of awareness of services included previous exposure to home care through Medicare home health and the experience of family, friends, and colleagues in their social network. 3) Caregivers talked to a variety of individuals in their formal and informal network about caregiving and services. 4) Caregivers with higher education tended to tap a wider social network for information about services 5) Respite was the most commonly used service but it was defined much more flexibly by those paying for it privately. 6) Both groups reported being influenced by their social network to use community services. Members of the formal network (social workers, physicians) provided information and referrals. Informal network members provided information, made linkages with specific caregiving resources and even offered financial assistance to purchase services.

The findings suggest that for many caregivers access to specific service information remains idiosyncratic and unsystematic, regardless of the standardized information provided by formal network sources. Social class appears to have a similar influence on caregivers' search for and use of services that transcends cultural (racial) differences. Service providers will need to consider different approaches on how to provide caregivers with needed information and assistance taking into account their experiences, perceptions, and backgrounds.