Transcript Resources for Enhancing Alzheimer’s Caregiver Health (REACH)

Developing Interventions for Ethnically
and Culturally Diverse Family Caregivers
of Elders with Alzheimer’s Disease or
Other Forms of Dementing Illness
Dolores 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
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 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 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 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 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 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” 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 & 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.: [email protected]
Cuban-American (Miami) program:
Sara Czaja, Ph.D.: [email protected]
Mexican-American (Palo Alto) program:
Dolores Gallagher-Thompson, Ph.D.:
[email protected]
Coordinating Center: Richard Schulz, Ph.D:
[email protected]
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 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)