Developing Interventions for Ethnically and Culturally Diverse Family Caregivers of Elders with Alzh

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Developing Interventions for Ethnically and
Culturally Diverse Family Caregivers of Elders
with Alzheimers Disease or Other Forms of
Dementing IllnessDolores Gallagher-Thompson,
PhD/Stanford Univ/Palo Alto/VA

• Collaborators and Consultants
• Patricia Arean, Ph.D, UCSF
• Darrick Lam, LCSW, SF Commission on Aging
• DeLois Guy, DSN, Univ Alabama, Birmingham
• Angela Heath, MGS, N4A
• Gayle Iwamasa, Ph.D, formerly UCLA, now Univ of
  Indianapolis, Indianapolis, IN

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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

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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

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Resources for Enhancing Alzheimers Caregiver
Health (REACH)

• 6 site, 5 year study by NIA/NINR
• Evaluate support interventions for family
  dementia caregivers
• Interventions tailored for specific ethnic groups

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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

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Hispanic/Latino Interventions

• Cuban-Americans/Florida
• Used a family-systems approach (several CGs)
• Emphasized cultural values familismo
• Addressed different accul-turation levels w/in
  family
• Highly personalized in-home 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

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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

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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.

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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!!!

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http//www.edc.gsph.pitt.edu/REACH/

• African-American (Birmingham) program Louis
  Burgio, Ph.D. Lburgio_at_sw.ua.edu
• Cuban-American (Miami) program
• Sara Czaja, Ph.D. sczaja_at_coeds.eng.miami.edu
• Mexican-American (Palo Alto) program
• Dolores Gallagher-Thompson, Ph.D.
  dolorest_at_stanford.edu
• Coordinating Center Richard Schulz, Ph.D
  schulz_at_vms.cis.pitt.edu

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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

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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)