September 2014
Alzheimer’s Disease Supportive Services Program:
Case Studies on Targeting and Engaging
Diverse and Underserved Communities
Report
Prepared for
Erin Long, MSW
Administration on Aging
Administration for Community Living
1 Massachusetts Avenue, NW
Washington, DC 20005
Prepared by
Sari B. Shuman, MPH, MSW
Patricia Yuen
Alzheimer’s Association
225 N. Michigan Avenue
17th Floor
Chicago, IL 60601
Kate Gordon, MSW
Joshua M. Wiener, PhD
RTI International
701 13th Street, NW, Suite 750
Washington, DC 20005
RTI Project Number 0212050.035.000.001.001
Acknowledgments
The authors would like to thank the state officials, community service organization staff members, and others who gave generously of their time to provide information about ADSSP Grant activities. The views expressed in this paper are those of the authors and do not necessarily express the opinions of the Administration for Community Living, RTI International, or the Alzheimer’s Association.
CONTENTS
Introduction
Common Themes
California
Project Background
Identifying Community Needs and Outreach
Project Results
Products That Other Organizations Might Use
Georgia
Project Background
Identifying Community Needs and Outreach
Project Results
Products That Other Organizations Might Use
New Mexico
Project Background
Identifying Community Needs and Outreach
Project Results
Products Other Organizations Might Use
South Carolina
Project Background
Identifying Community Needs and Outreach
Project Results
Products That Other Organizations Might Use
References
1
Introduction
The Alzheimer’s Disease Supportive Services Program (ADSSP) supports state efforts to expand the availability of community-level supportive services for persons with Alzheimer’s disease and related disorders (ADRD) and their caregivers.In particular, the ADSSP authorizing statute emphasizesproviding access to services for individuals “who are members of racial or ethnic minority groups, who have limited proficiency in speaking the English language, or who live in rural areas.” The four grant projects profiled in this report successfully met this goal of serving minority or underserved persons with ADRD and their caregivers.
The grant projects from California, Georgia, New Mexico, and South Carolina each focused on serving distinct target populations.The project in California worked to engage Chinese and Japanese communities in Southern California and Chinese and Vietnamese communities in Northern California. Georgia’s project included a target population from 11 rural counties in central and west-south Georgia. The project in New Mexico focused on reaching veterans with ADRD, with an emphasis on Hispanic and American Indian families.Finally, South Carolina’s project targeted primarily the AfricanAmerican rural population in the southeastern part of the state.
Information in this report was gathered from interviews conducted with program staff and staff at project partner agencies along with narrative reports and other project-related materials provided by state grantees.
Common Themes
Throughout interviews with the staff from each state grant and project partner agencies, some common themes emerged related to how the projects successfully engaged and recruited minority or underserved persons. These common themes include the following:
•Recognize cultural and community-specific norms—ADSSP grantees were not always members of the communities they targeted in their projects. Therefore, the grant staff needed time to identify and incorporate specific cultural and community-specific norms into the project. In some cases, staff from organizations participating in the grant provided assistance because they were of the same ethnicity and culture as the target population or they could explain cultural and community-specific norms of the target population. For instance, in California’s Dementia Care Network in Asian Pacific Islander (API) communities, care advocates, who worked directly with caregivers, were the same ethnicity and fluent in the language of the people they served. They were able to articulate the differences and similarities in the API culture with the majority culture. Similarly, for the New Mexico grant, Veteran Service Officers, who were veterans living in the communities the New Mexico program was serving, were able to provide information about the community of Veterans to project staff. In some instances, staff who worked on the grant project also had to identify gatekeepers within communities and determine how to best work with these individuals. For example, in New Mexico’s project, American Indian Tribal leaders served as gatekeepers to the community. They allowed the grant project to enter the community and provided consistent support.
•Build trusting relationships—Throughout the course of the project and after it concluded, it was essential for project staff to establish and maintain trusting relationships with local leaders and the target population.Having trusting relationships assisted project staff and the community in a number of ways. In California these relationships were built by demonstrating genuine commitment to the community and community-based organizations that the Dementia Care Network was being established to assist. This commitment was demonstrated by investing in the community partners, attending events in the community, and showing appreciation and respect. In South Carolina, project staff worked to build trust in the rural community they served by establishing a way for caregivers to seek help confidentially. This confidential method was essential for this project because of stigma surrounding Alzheimer’s disease in the community.
•Find a local champion—Project staff reported that there was often a local champion within the target community. Many times, the local advocate knew what was needed to get aproject into a certain community agency or knew resources that could assist the project staff.For instance, in New Mexico’s project in the Navajo community, the champion needed to attend the project’s caregiver training to gain “buy-in” from potential participants even if the champion did not need the caregiver services.The champion’s presence provided assurance to the community that the trainer could be trusted. In addition, the local champions were also a source of referrals for the projects. In the Georgia Resources to Enhance Alzheimer’s Caregiver Health (REACH) project, the best source of referrals came from champions within local social service agencies. These champions identified themselves by stating their interest in Georgia REACH when interventionists brought information about the program to organizations where caregivers frequented. Champions of Georgia REACH took time to learn about the program, understood the value of the program, and were motivated to refer people to Georgia REACH.
•Tailor services to suit the needs of the community—Project staff recognized that diverse and underserved communities may have different characteristics. Therefore, outreach strategies or services that are successful with one population might not be well suited for other groups. For the South Carolina grant, the self-help club concept was tailored to each individual community where the club location, agenda, topics, and schedule were based on participants’ preferences.In addition, when one of the self-help clubs did not have great results, the club was not shut down. Rather, the self-help club’s location was moved to be more visible to the community and the format was changed to better suit the needs of the community. In California, the Dementia Care Network project tailored services for the API community by having services provided by care advocates who were bicultural—they were the same ethnicity as the community they served but they understood the similarities and differences between the API and American cultures.
•Use outreach strategies that are meaningful to the community—When establishing relationships with leaders in the community from community-based organizations, religious institutions, or other locations, project staff learned about the characteristics of potential project participants. This allowed the grantee to develop outreach techniques that were relevant to particular communities and helped build the project’s credibility. For the Georgia REACH project, the initial outreach technique of having a part-time outreach coordinator attend community events to gain referrals to the program was not successful. The community leaders who attended the events shared suggestions for the project but never assisted in promoting the project. The grantee modified outreach for the project as a result and for the remainder of the grant used multiple methods to reach caregivers. One such method was to conduct a full day of outreach in a community by visiting potential referral sources to either leave brochures about Georgia REACH or set up meetings and training sessions with physicians, senior center staff, and others with direct access to caregivers to provide more in-depth information about the project.For California’s Dementia Care Network, project staff recognized that each ethnic community had different resources and levels of acculturation and learned which media outlets appealed to each population.Ethnic radio was the most trusted source of information in many instances. A successful outreach method was having care advocates and trusted professionals, who were part of the API community, participate in interviews on ethnic radio stations. These interviews raised awareness of and dispelled myths about ADRD.
California
Project Background
In 2000, the California Department on Aging was awarded an Alzheimer’s Disease Demonstration Grant to the States (the previous name for the ADSSP program) to implement the API Dementia Care Network in Chinese and Japanese communities in Southern California and in Chinese and Vietnamese communities in Northern California.[1] Over the prior three decades, these communities were growing rapidly. At the time the API Dementia Care Network was implemented, APIs were the fastest growing ethnic group over the age of 65 in the United States and the second largest ethnic group in Los Angeles County. The API population is composed of more than 45 distinct ethnic groups who speak more than 28 languages, according to the 2000 U.S. Census. Due to the large number of ethnic groups and languages, this posed unique challenges in meeting the needs of the API community.Community services were not frequently available in the many API languages. In addition, the needs often were different for the API communities based on whether they were first-, second-, and third-generation immigrants to the United States. Prior to the development of the Dementia Care Network, the API community had a perception that community-based agencies for caregivers and people with Alzheimer’s disease were not for use by their community. This perception and the language and cultural barriers experienced by the API communities resulted in them not using already established services available to caregivers.
To meet the challenges of reaching API communities and providing culturally appropriate services, the Dementia Care Network established a collaborative group of local community-based organizations and service providers. The collaborative group worked together to assess gaps and barriers in the continuum of care for people with dementia and their families, to develop a comprehensive awareness campaign for the targeted ethnic community, to facilitate the coordination of existing services in the target area, to identify agencies in the targeted communities that can provide families and caregivers with culturally appropriate and dementia-knowledgeable care and provide them with training so that gaps in delivery of service can be filled, and to evaluate existing translated information, develop linguistically and culturally appropriate materials, and disseminate them to the community.
The California Department on Aging partnered with the Alzheimer’s Association–California Southland Chapter and Northern California & Northern Nevada Chapter to implement the API Dementia Care Network. In addition, the project partnered with community-based organizations in Southern and Northern California. The project partners received subcontracts during the grant to provide services to program participants.
Key community-based project partners embedded in ethnic communities received funding to hire care advocates for the Dementia Care Network. Each care advocate was based within one of the community-based organizations and carried his or her own caseload of families needing assistance. The care advocates served as a point person for outreach, caregiver education, home visits, care planning, service purchase and coordination, monitoring, and follow-up for the families within their caseload. The care advocates were the same ethnicity and fluent in the language of the target population they served. They were bicultural; they could articulate the differences and similarities of the API culture they served and understood American culture. This made the care advocates well suited to explain how the use of services through community-based organizations could assist the API families with whom they worked. Furthermore, the care advocates provided insight to the mainstream agencies about tailoring traditional social supports to be more culturally appropriate to the different API communities in the project. Care advocates received training on dementia from the Alzheimer’s Association.In addition, an API social worker with many years of dementia care experience served as a mentor to the care advocates assisting to build their clinical skills.Alzheimer’s Association staff also received training on the culture of the API communities.
Identifying Community Needs and Outreach
To determine the needs of the various target populations, the project staff conducted a needs assessment that examined gaps in each community’s continuum of care.The continuum included public awareness about Alzheimer’s disease, diagnostic services, community and caregiver education programs about Alzheimer’s disease and dementia, adult day care centers, support groups, respite care, legal services, residential and nursing care, and end-of-life care.The API communities shared a great resistance to labeling a person as having dementia or disclosing to others that a person had dementia.For example, in Northern California’s Vietnamese community, a Vietnamese-speaking doctor could not be located to conduct assessments and make diagnoses because doctors did not want to tell people they had dementia.
Outreach efforts were tailored to each community. The project staff recognized that each ethnic community had different resources and levels of acculturation. In working with collaborators in community-based organizations, the project staff learned about those differences and adopted outreach strategies suited to each community. For instance, the staff learned which media outlets appealed to each population and what organizations were highly respected in communities. In most instances, ethnic media, in particular the radio, was the most trusted source of information, and therefore was used to market Dementia Care Network services. One successful outreach method was to solicit the radio stations that broadcasted in the native language of the API community to conduct interviews with the care advocates and credible professionals such as Chinese or Japanese physicians or family caregivers.
Care advocates also made presentations on Dementia Care Network services at senior centers, churches, community clubs, and other sites. Through these presentations, the care advocates made Dementia Care Network services known in the community and began engaging caregiving families.Over time, the care advocates built relationships with the general public and family caregivers in the community. Once trust was established, the care advocates developed care plans, helped caregivers access support groups in their native language, provided caregiver education, found respite services, and connected the families to other needed services such as a diagnostic center or an elder law attorney.
Project Results
The Dementia Care Network resulted in culturally appropriate services, such as care planning, support groups, and caregiver education, being created for people with dementia and Alzheimer’s disease in areas that previously had few or no services available. The community-based organizations determined project success in three ways: (1)the ability of the project to achieve goals for outreach, caregiver education, respite, and direct services delivery; (2) consumer satisfaction with services; and (3) the Network’s ability to fill gaps in the continuum of care by providing or training others to provide a variety of services such as support groups, care management, caregiver education, legal planning, and diagnostic and treatment services. The availability of these services at the end of the 3-year project was compared to baseline availability to assess whether the project has succeeded in filling some of the identified gaps in service.