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Developing Interventions for Ethnically and Culturally Diverse Family Caregivers of Elders with Alzheimer’s Disease Developing Interventions for Ethnically and Culturally Diverse Family Caregivers of Elders with Alzheimer’s Disease or Other Forms of Dementing Illness Dolores Gallagher-Thompson, Ph. D/Stanford Univ/Palo Alto/VA • Collaborators and Consultants: • Patricia Arean, Ph. D, UCSF • Darrick Lam, LCSW, SF Commission on Aging • De. Lois Guy, DSN, Univ Alabama, Birmingham • Angela Heath, MGS, N 4 A • Gayle Iwamasa, Ph. D, formerly UCLA, now Univ of Indianapolis, IN

Developing Interventions For the past 7 years, we have worked extensively with Hispanic/Latino and Developing Interventions For the past 7 years, we have worked extensively with Hispanic/Latino and Anglo/Caucasian caregivers and in the past 3 years we have begun working with Chinese and Japanese families Conduct telephone and written surveys, but most important: conduct Focus Groups in the Caregivers’ Preferred Language to learn their needs & discuss how to meet them Based on these inputs, next, plan to work closely with community based service providers and Advisory Committees to translate the caregivers’ wants & needs into programs that are do-able in the community

Different Ethnic and Cultural Groups have Different Needs for Intervention But some general principles Different Ethnic and Cultural Groups have Different Needs for Intervention But some general principles apply: Interventions should be aimed at the FAMILY not just the primary caregiver (INCLUSIVE) They should be delivered by staff who are not only bilingual but bicultural as well (whenever possible) and who have received training in cultural competence as needed Be respectful of language preferences & use multi-validated translations of materials Be aware of practical concerns, such as cost, time commitment, location, transportation, elder sitting needs, etc. and work creatively with participants to resolve these concerns

Resources for Enhancing Alzheimer’s Caregiver Health (REACH) • 6 site, 5 year study by Resources for Enhancing Alzheimer’s Caregiver Health (REACH) • 6 site, 5 year study by NIA/NINR • Evaluate support interventions for family dementia caregivers • Interventions tailored for specific ethnic groups

African-American Interventions Informational workshops offered first, in local churches & senior centers, conducted by African-American Interventions Informational workshops offered first, in local churches & senior centers, conducted by African American staff, to teach about dementia and to encourage further participation In-home skills-training program followed, to teach techniques for management of troublesome behavior at home & to increase engagement in pleasant events for CG & care-receiver Home visits addressed family issues, eased practical barriers, and allowed interventionists to adapt materials to diverse education levels

Hispanic/Latino Interventions Cuban-Americans/Florida Used a family-systems approach (several CGs) Emphasized cultural values: familismo Addressed Hispanic/Latino Interventions Cuban-Americans/Florida Used a family-systems approach (several CGs) Emphasized cultural values: familismo Addressed different acculturation levels w/in family Highly personalized inhome delivery Mexican-Americans/CA Non-stigmatizing psychoeducational format Taught cognitive & behavioral skills to help CGs cope with less stress, personalismo Small groups increased social support Community locations; CGs reimbursed for sitters & travel

Recruitment & Retention Issues A total of 400 African American CGs participated in REACH Recruitment & Retention Issues A total of 400 African American CGs participated in REACH at Memphis, Philadelphia, Boston, and Birmingham A total of 250 Hispanic/Latina CGs were enrolled at Miami & Palo Alto (about 125 at each site) Overall, the retention rate was excellent: about 15% discontinued in REACH over 18 months; this did not differ across groups. Placement rates were higher among the Anglos/Caucasians (about 25% overall) compared to the African Americans and Hispanics/Latinos (about 10%) across sites

REACH Preliminary Results Data are just now being analyzed across sites A “first look” REACH Preliminary Results Data are just now being analyzed across sites A “first look” indicates that African Americans benefited more from the in-home skills training used at Birmingham (vs Whites at that site). Similarly, Mexican Americans benefited more from the “Coping with Caregiving” Small Group approach used at Palo Alto (vs. Anglos there) and at Miami, Cuban Americans showed most improvement with an approach using both Family Systems Therapy and video teleconferencing. REACH is the first multi-site study of its kind that specifically targeted African American and Hispanic/Latino CGs for inclusion, using interventions that were specifically developed or tailored to meet at least some of their specific needs. Overall results are eagerly anticipated.

Limitations of REACH Addressed only African-Americans and Hispanics/Latinos; culturally appropriate programs needed for Asians Limitations of REACH Addressed only African-Americans and Hispanics/Latinos; culturally appropriate programs needed for Asians & Native Americans Limited number of approaches were evaluated: skills-training, family systems, cognitive behavioral groups, etc. Other modalities may be more effective &/or appropriate for particular groups. Additional data-gathering is needed!!!

http: //www. edc. gsph. pitt. edu/REACH/ African-American (Birmingham) program: Louis Burgio, Ph. D. : http: //www. edc. gsph. pitt. edu/REACH/ African-American (Birmingham) program: Louis Burgio, Ph. D. : [email protected] ua. edu Cuban-American (Miami) program: Sara Czaja, Ph. D. : [email protected] eng. miami. edu Mexican-American (Palo Alto) program: Dolores Gallagher-Thompson, Ph. D. : [email protected] edu Coordinating Center: Richard Schulz, Ph. D: [email protected] cis. pitt. edu

Development of Interventions for Chinese & Japanese Dementia Family Caregivers Cultural traditions, language, historical Development of Interventions for Chinese & Japanese Dementia Family Caregivers Cultural traditions, language, historical experiences, immigration patterns, and family values are very distinct; Asian groups CANNOT be combined! Chinese CGs express preference for in-home interventions (vs. small groups or support groups) that help them learn to bring more harmony into the home & that promote family cohesion Japanese CGs express preference for educational programs focusing on Wellness Promotion and Health Benefits – not on dementia per se Chinese CGs also are interested in programs that promote physical health and reduce stress, such as those using Tai Chi & other contemplative means

Available Intervention Materials REACH programs are all available in manualized forms: contact each site Available Intervention Materials REACH programs are all available in manualized forms: contact each site to receive their materials. At Palo Alto, we have the following available and are happy to send them to interested persons: “Coping with Caregiving” psychoeducational program in both English and Spanish “Coping with Frustration” in both English & Spanish “Caregiving Assistance Project” in both Chinese & Eng PLUS a new, brief screening measure for detection of dementia in Chinese & Japanese elders (in 3 languages)