September 2014

Alzheimer’s Disease Supportive Services Program:

Case Studies on Targeting and EngagingDiverse and Underserved Communities

Report

Prepared for

Erin Long, MSWAdministration on Aging

Administration for Community Living1 Massachusetts Avenue, NW

Washington, DC 20005

Prepared by

Sari B. Shuman, MPH, MSWPatricia Yuen

Alzheimer’s Association225 N. Michigan Avenue

17th FloorChicago, IL 60601

Kate Gordon, MSWJoshua 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......................................................................................................................................

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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 emphasizes providing 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 African American 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.

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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 a project 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

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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.

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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

1 The Alzheimer’s Disease Demonstration Grants to the States (ADDGS) was the program that preceded ADSSP.

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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-

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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.

Overcoming the stigma about Alzheimer’s disease and dementia among professionals and the target population was a major challenge and goal in establishing the Dementia Care Networks. A diagnosis of Alzheimer’s disease or dementia is seen as shameful to many API families and some feel as though they did something wrong to cause the disease. In many API communities, it is seen as disrespectful to “label” an elderly person as demented. Getting past the stigmatization to effectively reach and work with the families remained challenging throughout the project.

This project was a 3-year grant; it was challenging but not impossible for these small ethnically based community agencies to find funding to continue this work after the initial funding ended because these organizations must address the diverse and pressing needs of many age groups, recent immigrants, and others. The project partner agencies now use other funding sources to carry on some aspects of this dementia care project in their community. Care advocates provided training to staff at the project partner agencies, thereby instilling knowledge about Alzheimer’s disease and dementia care and services within their own organizations. This training has helped maintain core services such as case management, referrals to appropriate services, support groups, and provision of respite when funds are available.

Lessons learned about working in diverse and underserved communities as a result of work with the API Dementia Care Network include the following:

• Demonstrate genuine long-term commitment to the community and community partners. If the main organization, in this case the Alzheimer’s Association chapter, leaves after the project is completed, it will be difficult to start up services again. It is key to attend events in the target community, invest in the partners, and show them appreciation. Show reciprocity, mutuality, and trust.

• Rely on project partner agencies to help adapt services to suit the needs of the community. Partners can also be given the freedom to deliver services in a way that is culturally more acceptable to their community. For instance, the entire family may choose to attend a support group as opposed to just one main caregiver. In addition, among some groups, caregivers may not see the value in using respite funds to leave home and rest; they may find it more meaningful to use the funds so the caregiver and person living with the disease can spend time together with other similar dyads.

• Be transparent with project partner agencies, especially if funds are being exchanged through sub-contracts.

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Products That Other Organizations Might Use

• Dementia Care Network Replication Manual, December 2004. Manual can be requested by contacting Patty Yuen at pyuen@rti.org .

• Translations of materials into Chinese, Japanese, and Vietnamese. Available at http://www.alz.org/asian/overview.asp?nL=ZH&dL=ZH .

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GEORGIA

Project Background

From 2008 to 2012, the Rosalynn Carter Institute for Caregiving (RCI) implemented the Resources to Enhance Alzheimer’s Caregiver Health (REACH II, known as Georgia REACH, through 11 counties in rural Georgia. RCI is located in one of the rural areas of Georgia. Rural caregivers can have difficulties accessing support because of lack of transportation, cost of traveling from their often isolated homes into town, and reluctance to leave their care recipient unattended at home. Additional challenges for rural caregivers include limited access to physicians to diagnose dementia and Alzheimer’s disease and widely varying levels of education. Georgia REACH helped address some of these barriers by providing in-home and telephone-based sessions.

The Georgia REACH model used was based on REACH as implemented in the Department of Veterans Administration (REACH VA). This model closely replicated the original study and had manuals and training and certification processes that could be used to support the implementation in rural Georgia. Georgia REACH addressed areas of concern for family caregivers: (1) safety, (2) isolation, (3) caregiving burden and depression, (4) managing problem behaviors of care recipients, (5) stress management, and (6) health self-care. Georgia REACH consisted of 12 sessions delivered to caregivers by a certified interventionist. Additional support was provided by a certified Telephone Support Group Leader during five monthly teleconferences, each 1 hour in length.

The key objectives of the project were to (1) develop a working team (steering committee) representing key stakeholders and procedures to facilitate the adoption, (2) implement and evaluate Georgia REACH, (3) successfully install the program in a provider agency of the Aging Network in rural Georgia, (4) fully implement the program and serve a minimum of 150 families, (5) adapt the program as necessary based on evaluation and real-world experience, (6) ensure the long-term maintenance and continued effectiveness of the program, and (7) develop materials and information that support successful adoption by others.

The target population for the project was family caregivers of people with ADRD who lived in 11 rural counties in central and west-south Georgia and who provided at least 4 hours of care each day and self-reported high levels of stress.

Community partners assisted with the project either as members of the steering committee or members of the implementation team. The steering committee community partners were management-level representatives from the Georgia Division of Aging Services, Alzheimer’s Association–Georgia Chapter and regional offices, the Area Agency on Aging (AAA) in the region, the Mattie Marshall Center (a local residential Alzheimer’s Care Unit); and two of the original investigators for REACH II, Dr. Alan Stephens and Dr. Linda Nichols. The steering committee helped to plan and work through problems during the project’s implementation. The implementation team was involved in daily planning and operational issues of the project and included community partners from both RCI and the Middle Flint Council on Aging. In the second year of the program, the RCI Caregiver Support Program took full responsibility for implementing Georgia REACH.

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After the initial implementation of Georgia REACH, the steering committee was not needed as much as expected. Rather, issues with the project’s implementation were brought directly to the stakeholders. For example, when recruitment of caregivers became challenging, the grantee worked more closely with the Alzheimer’s Association. When safety issues arose for interventionists, the grantee used a safety protocol provided by the Georgia Division on Aging Services. When operational issues arose such as encountering dual primary caregivers or mental health issues coinciding with the dementia, the grantee sought the advice of the research investigators.

REACH is built on the premise that caregivers can be taught strategies and given tools that will empower them and thus instill the hope they will be able to meet their caregiving duties. This empowerment model requires that the interventionists assume a coaching role rather than the traditional case management role. In interviewing candidates for interventionists, RCI found that people with strong case management experience tended to focus on identifying available resources and arranging for services. The interventionists needed to be able to work with the caregivers to help them learn to access services on their own and build a skill set for managing the changing needs of the person with dementia.

Having candidates conduct a mock session with a staff member acting as a caregiver during the selection process proved to be a very effective way to identify those with the appropriate coaching skills. The most successful staff were those who had life experiences with dementia or Alzheimer’s disease or were trained social workers or nurses.

Identifying Community Needs and Outreach

As part of a needs assessment from 2007 to 2008, RCI conducted a telephone survey of counties surrounding its office to determine needs as they relate to caregiving for people with Alzheimer’s disease and caregiving for people with other conditions requiring support. Data from that survey were used to focus attention on areas of need for caregivers of people with ADRD.

Early project recruitment efforts, such as having a part-time staff person attend community events with steering committee members to gain referrals to the program, did not yield a high enough number of participants. Project staff emphasized that these early efforts and low numbers of participants taught them the importance of trying as many outreach and recruitment efforts as possible when working to reach diverse and underserved communities. For this project, many referral sources were identified, contacted, and followed up with via e-mail and phone, and in person. At the beginning of the project, a part-time outreach coordinator held community events with local steering committees and outreach groups. These events were geared toward making local service providers aware of the program with the goal of having those providers refer clients to the program. Community leaders attended the events and shared their suggestions on how to promote the program, but they never participated in actual outreach activities. The community leaders generally declined to distribute materials or make presentations at their church or club. The grantee indicated that the community leaders possibly only felt comfortable advising on ways to conduct outreach but felt they were not responsible for promoting the program. In addition, the grantee indicated that it was clear that those in attendance were not comfortable talking about dementia during the community events and

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therefore would most likely be uncomfortable promoting the project as well. Therefore, despite the good turnout at these events and the efforts of the part-time outreach coordinator, the community events did not bring enough referrals to the project. As a result, the part-time outreach coordinator position was phased out and the job of outreach and recruitment was given to Georgia REACH care coaches. Outreach and recruitment became the top agenda item on the weekly Georgia REACH care coaches call.

The project grantee explained that caregivers’ failure to self-identify and a reluctance to admit the need for assistance is a barrier to service use. In addition, most people need to receive the same information a few times before they will act on it. To accomplish this, RCI launched a large marketing campaign. The project used a variety of techniques to reach people in the 11-county area served by the project. An example of a large-scale effort conducted by all project staff was a full-day outreach blitz. This activity, started in the second year of the grant, brought the care coach and RCI staff into a county for a day to establish relationships with potential local referral sources, including banks, beauty salons, grocery stores, and pharmacies. In these locations, the RCI team would leave program brochures with permission of the business. In locations such as doctor’s offices, clinics, hospitals, and senior centers, where there was the option of promoting Georgia REACH with direct interaction, RCI staff would provide training at staff meetings, present information about Georgia REACH at staff meetings, and seek out opportunities to talk directly with those who had contact with caregivers.

The project director reported that there was no single outreach technique that brought an abundance of referrals to the program. The best source of referrals came from people the care coaches identified as champions within local social service agencies. Interventionists regularly contacted organizations where caregivers were often found, such as senior centers. Champions identified themselves by voicing their interest in Georgia REACH. They were the people who understood the value of Georgia REACH and were motivated to connect their clients or acquaintances with the program.

The staff also recognized that to gain buy-in from potential participants, they needed to leave something with the caregivers to assist them between program sessions and once the program was over. To fill this need, the project interventionists taught skills to caregivers to access appropriate services and provided participants with a caregiver notebook that included information about Alzheimer’s disease and dementia and common caregiving and behavioral issues.

Project Results

The majority of Georgia REACH participants were from rural areas. The project served 138 people with dementia and 138 caregivers, of which 59 percent of each were from rural areas. The Georgia REACH evaluation showed similar results to those of the REACH VA, which was the model that the staff were replicating for this project. A formal evaluation was conducted using a Risk Appraisal Assessment, adapted from REACH II (Czaja et al., 2009), the Zarit Burden Scale (Zarit et al., 1980), the Center for Epidemiologic Studies Depression Scale (Andresen et al., 1994), the Revised Memory and Behavior Problem Checklist (Teri et al., 1992), the Caregiver Self-Efficacy (Steffen et al., 2002), and Desire to Institutionalize (Morycz, 1985). Caregivers showed significant improvements in decreasing burden and depression and reported

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improvements in their health self-report ratings. On the overall program evaluation, caregivers (100 percent) reported a better understanding of Alzheimer’s disease, the caregiving role, and increased confidence in dealing with behavioral problems of the care recipient. Most caregivers (89.1 percent) reported an improvement in the quality of care for the care recipient.

The main success of Georgia REACH is that it demonstrated that the model could be replicated in other rural and nonrural communities with minor adjustments. In a subsequent ADSSP grant, RCI implemented the Georgia REACH model into areas of Coastal Georgia. Coastal Georgia REACH serves a large area of the state, which is primarily rural although it does include urban areas as well. RCI served caregivers in both rural and urban settings in Coastal Georgia REACH, with outcomes that are consistent with REACH findings from randomized control trials.

A major challenge of Georgia REACH was recruiting clients. Because RCI is not primarily a provider, it does not have direct access to caregivers, so had to rely on service agencies and others with direct contact to recruit caregivers into the project. The grantee believes that embedding the project within an organization that has the capacity to adopt an evidence-based project and monitor the program’s fidelity throughout the course of the project offers the best chance for successful sustainability. Because of this challenge, the project staff moved to a different model when they applied for the Coastal Georgia REACH grant. In that model, the Coastal Georgia Regional Commission AAA was the central organization involved in Coastal REACH and referrals to caregivers were plentiful. Georgia REACH is not being sustained, because the project was not embedded into an organization that could continue the program. However, Coastal REACH will be partially sustained using federal funds from the National Family Caregiver Support program and will continue to be housed in the Coastal Georgia Regional AAA.

The experiences of Georgia REACH led to a number of lessons that can be applied when implementing projects to reach persons with dementia and their caregivers in underserved communities:

• During caregiver sessions, interventionists should focus on building skills that a caregiver needs to be successful when accessing services for a person with dementia after the program is completed.

• Travel is a major expense for serving rural caregivers because of the geographical distance to rural homes. Interventionists had to be very diligent to ensure that the caregiver would be available for the session before driving to their home. In addition, mapping client addresses to ensure that sessions are scheduled in a manner that minimizes travel costs and time is important but not always possible. Session cancellations and rescheduling may happen; to prevent finding no one at home, interventionists called to confirm the day before a visit.

• Do not underestimate the isolation experienced by rural caregivers. Rural caregivers prefer face-to-face versus telephone meetings. Georgia REACH offered participants the option for telephone meetings, but face-to-face meetings were largely preferred. These face-to-face meetings can be costly because of the need to travel long distances

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to rural caregivers. Costs can be minimized by hiring interventionists who live within the rural communities they serve.

• It is essential to locate a champion at each agency that is partnered with the project and to establish a trusting working relationship. Champions identified themselves to the RCI staff by demonstrating their interest in Georgia REACH, learning as much as possible about the program, and referring all caregivers who were appropriate for the program.

• Embedding the project within an organization that has the capacity to adopt an evidence-based project and monitor the program’s fidelity throughout the course of the project offers the best chance for successful sustainability.

• Prepare to make marketing and recruitment one of the program’s top priorities. Through Georgia REACH, staff learned that using a part-time outreach coordinator was not as successful as multiple staff, including interventionists, taking on the tasks of outreach and participant enrollment, in addition to their other duties. This model of using interventionists to conduct outreach and recruitment can work if the interventionists have the skill set for these tasks and the willingness to interact with potential referral sources directly. This skill set should be considered during the hiring process if this outreach model is to be replicated.

• Participant waiting lists are not a reliable source for referrals because when people wait a long time to enroll in the program, they may lose interest and self-select into other programs.

• Caregivers expressed a strong appreciation for the education they received regarding dementia. Having someone to answer their specific questions over time is considered substantially more effective than receiving written information or even brief conversations with their medical professionals.

Products That Other Organizations Might Use

(Products can be requested by contacting Patty Yuen at pyuen@rti.org . )

• Materials for hiring interventionists included job description, role plays, and scoring sheet

• Risk priority inventory, caregiver needs assessment

• Outreach workplan and fliers.

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NEW MEXICO

Project Background

From 2010 to 2013, the New Mexico Aging & Long-Term Services Department (ALTSD) was awarded an ADSSP grant to improve the capacity of the state’s home and community-based long-term care delivery system to address the needs and issues of caregivers of veterans with ADRD. The grant activities targeted Hispanic and American Indian families. ALTSD supported the provision of Savvy Caregiver Training statewide and its adaptation to meet the needs of the target populations. Savvy Caregiver is an evidence-based caregiver educational program that provides caregivers with the basic knowledge and skills needed to care for loved ones with ADRD. Savvy Caregiver is a 12-hour training program, usually delivered in 2-hour sessions over a 6-week period. The adaptations included providing Cuidando con Respeto (Caring with Respect), a culturally relevant adaptation of the Savvy Caregiver curriculum for Spanish-speaking caregivers, veteran-specific content, and Navajo-specific content.

The key objectives of the project were to (1) educate and train New Mexico home and community based long-term care services system employees and volunteers regarding the provision of outreach and supportive services to caregivers of veterans with ADRD; (2) expand partnerships with the staff of New Mexico’s primary veteran service agencies to educate them regarding the availability of evidence-based caregiver intervention opportunities, resources, and supports; and (3) implement Savvy Caregiver, an evidence-based caregiver intervention for caregivers of veterans with Alzheimer’s disease and other dementias.

ALTSD partnered with the Alzheimer’s Association, New Mexico Chapter, to implement the Savvy Caregiver program—to train and educate veterans and their caregivers; to develop culturally and linguistically appropriate training, educational, and outreach materials; and to provide training to staff and volunteers of New Mexico organizations working with elders. More than 36 organizations were contacted over the course of the project to assist with promotion, recruitment, and coordination of the Savvy Caregiver intervention.

The Alzheimer’s Association, New Mexico Chapter, engaged both lay volunteers and staff with advanced degrees to implement Savvy Caregiver, to train/educate veterans, and to train staff and volunteers of the other New Mexico organizations participating in the project. The original staffing plan was a centralized model, with staff travelling around the state. This more traditional outreach model with centralized staff did not produce the expected results (e.g., large numbers of referrals). In addition, although caregivers were informed of the availability of travel reimbursement to attend the course in the larger (more centralized) communities, the travel reimbursements were rarely used. After conferring with the partners and subcontractors, and holding a special meeting to discuss outreach and implementation of the program to culturally diverse caregivers, it was determined that outreach and implementation methods needed to be more local and individualized. Hiring or contracting with local outreach staff produced better and more effective enrollment and project results. Ultimately, the outreach staff were located in the regional offices of the Alzheimer’s Association throughout the state.

In providing Savvy Caregiver training, it was important within each of these target populations that staff were aware of and mindful to use proper idioms, avoid cultural taboo,

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recognize differing educational levels, and understand other specialized needs of the target population.

The Navajo Nation and seven Pueblos (communities of American Indians in the Southwestern United States) participated in implementing the project. The Savvy Caregiver curriculum was adapted for Indian Country to include additional content in the form of “cultural guides” on Indian Country Culture and Caregiving. The content on Culture and Caregiving was designed to assist a Savvy Caregiver trainer in Indian Country to adapt the Savvy program for any American Indian/Alaska Native culture. This additional content allowed the trainer to (1) recognize cultural factors occurring in family caregiving that may help or detract from quality care, (2) help caregivers to strengthen useful cultural factors, and (3) adapt the manual and teaching style to best fit each locale. In addition, it highlighted the importance of family and community in Indian Country. For example, the project staff was taught by the community that American Indians have a strong tradition of extended family caregiving. This required adaptation of the Savvy Caregiver model to allow participation of more than one specified “primary” caregiver in the training program.

In addition, New Mexico’s primary veterans’ services agencies were involved throughout the project (the Veterans Affairs Hospital, the New Mexico Department of Veterans Services, and the Navajo Department of Veterans Affairs). Staff from New Mexico’s primary veteran service agencies participating in the project included veteran service officers who are, themselves, veterans living in the communities they serve. The services of a commander of a Navajo veteran organization and a Navajo consultant were used to design and present Navajo-specialized Savvy Caregiver presentations to members of the Navajo Nation. They provided guidance that community members would not attend a standalone class where their attendance would single them out as different but community members would remain at an established meeting to learn more about a subject of interest. These contacts helped secure community participation by linking Savvy Caregiver classes with existing meetings of their respective Navajo veteran organizations. Both were trained in Savvy Caregiver and were in attendance at all of the classes in their communities. They were available to assist during classes with translation and cultural clarifications of the curriculum. In addition, they were viewed as trusted members of the community and appeared to provide a sense of comfort to the caregivers while legitimizing the training with locals.

ALTSD also partnered with the Southern Area Health Education Center (SoAHEC) who trained its community health workers—Promotoras—to provide Cuidando con Respeto. Promotoras are lay Hispanic/Latino community members who receive specialized training to provide basic health education in the community, although they are not professional health care workers (Elder et al., 2009). Promotoras are liaisons between their community, health professionals, and human and social service organizations. The Spanish-speaking population also considers the family as a unit of caregivers, rather than one specified primary caregiver.

Identifying Community Needs and Outreach

In 2010, the VA Caregiver Support Program was expanding nationally. Through efforts of the VA, a large portion of New Mexico’s Hispanic and American Indian veterans were found

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to not be accessing caregiver services for which they were eligible. The Aging Network was in the early stages of developing a partnership with the VA in New Mexico.

To reach the targeted diverse and underserved communities, the project focused on the development of an outreach plan, engaging partners to assume supportive roles, such as translating materials and using culturally competent key community members to assist with outreach and publicity. The component of the project outreach that was different from recruiting Savvy Caregiver participants from the mainstream community was the type of outreach and education that had to take place within the target communities prior referrals and participation in the Savvy course. There was greater participation of the target populations after a trusted community member or organization was involved in the outreach and the training. Courses held in a location that was familiar to the caregivers, or as part of a trusted organization’s regular meeting agendas, also seemed to make a difference in attendance (as opposed to holding a Savvy course at the Alzheimer’s Association offices). Although the project’s collaborative partners remained engaged and informed of grant activities by attending regularly scheduled outreach planning meetings, planning efforts did not bring adequate referrals to the project. The project director reported that higher rates of recruitment success were found when working directly with local staff from the partner organizations. ALTSD continued to localize outreach efforts throughout the project.

The best source of referrals came from identified, trusted local community members, who became champions for the project. These included community leaders, religious leaders, tribal leaders, tribal social services personnel, senior center/meal site directors, and others providing services to the target populations. Specifically, within the Navajo community, to gain buy-in from potential participants, the champion needed to attend the training, even if the champion did not need the caregiver services. The champion’s presence provided assurance that the trainer could be trusted by the community.

The strong tradition of extended family caregiving in Tribal communities often compensates for the decreasing function of the elder with dementia. Families may use traditional and cultural views of aging to explain the changes associated with dementia, thus normalizing the changes rather than seeing them as a disease in need of treatment (Finke, 2014).

Project Results

A total of 395 participants were trained through Savvy Caregiver and 420 were trained through Cuidando con Respeto. Pre- and post-tests were designed by the project staff and partners to evaluate improvements in the awareness and understanding of ADRD for Savvy Caregiver and Cuidando con Respeto training participants.

Pre- and post-test data collected from Savvy Caregiver participants showed that the vast majority of respondents participating in the training reported increases in their knowledge of ADRD and in the importance of caregiver self-care as a result of the training. An additional follow-up survey was mailed to approximately 200 individuals who participated in the Savvy Caregiver training. The results of this follow-up survey showed that 68 percent of the respondents would be able to care for their loved ones for a longer period of time as a result of the training.

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Similar results were found in the feedback from participants in Cuidando con Respeto. Results comparing pre- and post-tests indicated that participants increased their knowledge of the effects of dementia and the progression of the disease, and the importance of self-care. The Zarit Caregiver Burden Scale was used to evaluate changes in how caregivers feel when taking care of loved ones with ADRD (Zarit et al., 1980). Data collected using the scale showed that, after participating in a Cuidando training, caregivers felt less stress, sadness, and anger toward loved ones in their care, developed strategies that helped them better provide care for loved ones, and felt better able to manage their own personal relationships and needs.

In addition, the use of support services and consumer-directed respite services by New Mexican veterans with ADRD and their caregivers increased following participation in Savvy Caregiver and Cuidando con Respeto, as measured by pre- and post-intervention surveys of caregivers. In a follow-up survey of Savvy Caregiver participants, 59 percent indicated they had used respite care since participating in training and, of these, 67 percent said they intended to continue to do so. Support services accessed by caregivers included those that were not dementia-specific, such as the disease management program “Managing Your Chronic Disease.” Project evaluation data indicated that the 20 New Mexico Department of Veterans Services veteran services officers trained increased their knowledge in the following areas: (1) Resources, Services, and Supports for Veterans; (2) Savvy Caregiver Training Components; (3) Resources for Caregivers; (4) Challenges of Caregiving; (5) Need for Caregiver Self-Care; (6) Progression of Alzheimer’s Disease; (7) Warning Signs of Alzheimer’s Disease; and (8) Diagnostic Process of Alzheimer’s Disease. Training was conducted for 26 New Mexico Aging Network providers. Their post-training survey results demonstrated an increase in knowledge about the Aging and Disability Resource Center (ADRC) and resources available for caregivers.

The main success of the project was that the Savvy Caregiver model was successfully replicated and adapted to meet the needs of the target populations, statewide, and the use of support services and consumer-directed respite services by veterans and their caregivers increased following participation in Savvy Caregiver. A major challenge in implementing the New Mexico project was navigating and working with the veteran system. ALTSD staff experienced initial difficulty in establishing relationships with veterans’ service organizations and agencies. Federal Department of Veterans Affairs offices were contacted by ALTSD staff but never responded to the request to participate in the program development, implementation, and evaluation. Without participation from the federal agency, the project staff felt that it was more challenging to engage the local VA system and could impede long-term project sustainability. Project staff found that it was important to actively identify and use individuals from the VA system who expressed interest in referring and recruiting participants for the project, rather than rely on individuals designated by the VA system to participate in meetings.

In general, veterans identified by the project in New Mexico communities had similar issues as did older nonveterans with Alzheimer’s disease in the general population. However, caregivers of veterans face additional challenges related to maneuvering their way through complex systems to obtain veterans’ benefits. In addition, project staff developed an understanding that many veterans are oriented to a military culture, and can be reticent to seek help or participate in groups or workshops, which may be viewed as weakness.

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ALTSD has increased access to Savvy Caregiver training throughout the state using state funds for a train-the-trainer project. The Savvy Caregiver training is being sustained by the Alzheimer’s Association, New Mexico Chapter, through state and local funding and targets a combined audience that includes veterans and the general population. SoAHEC continues to provide Cuidando con Respeto through its Promotoras. Within American Indian communities, the New Mexico Indian AAA director and the National Indian Council on Aging are exploring further implementation of Savvy Caregiver training and adjustment of the model to be culturally appropriate for American Indians outside of the Navajo population. The ALTSD veterans’ liaison continues to meet on a regular basis with the New Mexico Department of Veterans’ Services to coordinate outreach and referral of veterans and their caregivers to the Alzheimer’s Association, the ADRC, and other supportive services available throughout the aging network.

The Alzheimer’s Disease Task Force was convened by ALTSD in response the passage of a state legislative mandate in 2012. This Task Force worked throughout 2012 and 2013 to create the New Mexico State Plan for Alzheimer’s Disease and Related Dementias. As a result of the success of this project, this State Plan includes activities to (1) increase access to culturally competent support services, including respite care, care coordination, and case management in a timely manner and in locations that meet family needs; and (2) expand evidence-based caregiver training in a manner that is effective across New Mexico cultures and locations.

The experiences of the New Mexico project resulted in a number of lessons that can be applied when implementing other projects to reach persons with dementia and their caregivers in underserved communities.

• Use local and regional structures and local community gatekeepers, both formal and informal, to plan and implement the project, because they are more familiar with local community issues, contacts, and culture.

• Use translators who are mindful of proper idioms, cultural taboos, educational levels, and specialized needs of the target population(s).

• Design the project using a proactive, flexible approach that recognizes and addresses cultural issues and barriers in real time, such as co-location of a training during another community event or being open to accepting multiple caregivers who feel they are providing equally for the person with dementia.

• Provide medical and health care professionals serving the target populations with specific materials designed for diversity outreach. Physicians and social workers in local communities made the most referrals, disseminated information, and practiced informal word-of-mouth recruitment when they understood the purpose and benefits of the project.

• Veterans’ service systems often operate in silos and do not reach outside their systems. Identify others who have successfully partnered with veterans’ organizations and build on their established relationships. In addition, using existing informal gatherings and formal meetings attended by veterans and their caregivers to both recruit and provide training.

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• Recognize that some cultures do not support a norm that encourages open discussion of dementia-related issues. To address this, include general dementia education as part of the initial project roll-out to heighten awareness and open community discussion. Additionally, present the intervention as an educational program versus training for caregivers of persons with dementia.

• Recognize that some cultures consider the family as a caregiving unit, rather than one specified caregiver.

Products Other Organizations Might Use

(Products can be requested by contacting Patty Yuen at pyuen@rti.org . )

• Veterans Savvy Caregiver Replication Manual, November 2013

• Savvy Caregiver in Indian Country–Training Manual. Available at http://nicoa.org/resources/savvy-caregiver/

• Outreach work plan and brochures

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SOUTH CAROLINA

Project Background

From 2008 to 2013, the South Carolina Lieutenant Governor’s Office on Aging was awarded two grants through the ADSSP to implement services targeted to underserved minority and rural communities.1 The three counties for these grant projects have a higher than average minority population: Charleston (28.8 percent), Berkeley (25.6 percent), and Dorchester (22.8 percent).

The impetus for the grant projects was the prevalence of Alzheimer’s disease among the African American population in conjunction with the tendency for the disease to go undiagnosed or for individuals to receive care late in the course of the disease process. The higher prevalence of Alzheimer’s disease among African Americans has been documented in a number of studies estimating the rates of Alzheimer’s disease to range from 14 percent to 100 percent higher for African Americans than Caucasian non-Hispanics (Boston University Alzheimer’s Disease Center, 2007). According to the South Carolina Alzheimer’s Disease Registry, the prevalence rates for Alzheimer’s disease among African Americans are also substantially higher in South Carolina.

In addition, findings from a survey conducted by the Alzheimer’s Foundation of America (2007) showed African American caregivers (46 percent) were more likely to express that they could have used more support from their religious leaders, compared to Hispanic (36 percent) and other caregivers (23 percent). Unlike more populated urban areas, services are often unavailable in rural communities.

Through South Carolina’s two ADSSP innovation grants, the Office on Aging, along with community partners, conducted outreach and screening through a mobile van of the ADRC in the rural Trident Region of South Carolina, and provided education through family consultants who were primarily African American congregants from local churches. The use of the faith communities to provide information was a key component of the project. The project also offered memory screenings, provided vouchers for respite services through community organizations, and established self-help clubs for caregivers of people with dementia. Community partners for the project included Alzheimer’s Association- South Carolina Chapter, Trident AAA/ADRC, Medical University of South Carolina Alzheimer’s Research and Clinical Programs (MUSC-ARCP); and the University of South Carolina, Arnold School of Public Health, Office for the Study of Aging.

The target population for the project was primarily the underserved African American rural populations within the three-county Trident Area in South Carolina’s Lowcountry—Charleston, Dorchester, and Berkeley Counties. These counties are in the southeastern part of the state and have some areas of extreme poverty where businesses are closing and transportation to needed services is difficult. Bringing services to this community was an essential aspect of the project. When entering these rural communities to offer project services, staff experienced

1 Prior to 2008, South Carolina also was awarded a grant through ADDGS, the program that preceded ADSSP. This case study focuses on the work conducted during the ADSSP grants.

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distrust from some residents. This distrust was partially the result of prior efforts from local research groups, who would come to the community to collect data and then leave without any follow-up to residents on the results of the study and without offering any assistance or services to community members.

Identifying Community Needs and Outreach

Outreach strategies varied depending on the project activity. For example, for the memory screens conducted by MUSC-ARCP, outreach was conducted through newspapers, newsletters, the Internet, and e-mail. Family consultants were recruited from community churches through the pastors, parish nurses, and other leaders in the communities. Self-help clubs gained members through word of mouth, referrals from physicians, social workers, and newspaper articles.

The Trident AAA/ADRC led the self-help club portion of the project. Prior to conducting their work, the Trident AAA/ADRC conducted a survey of older adults in the community to help identify the needs of the community. In addition, when entering any of the communities, the project staff learned about the area. Staff determined whom to introduce the program, and while originally it was thought that they should speak to the town council, mayor, or religious leader, the reality was different. The staff asked the question of community residents, “Who do you go to see when you want to get something done in your community?” Many community residents responded with the name of one person. This person was seen as a local champion. The staff also learned that when they introduced their programs into the community, the potential participants would not commit to the project immediately. Rather, they often waited until after a few visits. Trust had to be established before community members became fully invested in the project. In some cases, it was easier to have someone already established in the community as a resource to act as a liaison to the target population.

After the project staff learned about the areas where they were working, staff recognized that they could not always use the same outreach approach for each community. Rather, they adapted their approach to focus efforts on what each community responded to most positively. For example, the self-help club concept was tailored to each individual community in that location; agenda, topics, and schedule were all based on preference of participants. Club members decided what topics they wanted to learn about and suggested speakers.

The Alzheimer’s Association–South Carolina Chapter was primarily responsible for the family consultant portion of the project. The staff member from the Alzheimer’s Association was a member of the community, so trust had been established prior to her work in the field to recruit family consultants. The staff person began work in the churches by identifying the health care ministry, which is a group of people, typically nurses and other health care professionals who are church members. Health care ministries serve congregants of their church by sharing health information with them. The members of each health care ministry were the target group to become volunteer family consultants. As family consultants, the volunteers were trained on the basics of Alzheimer’s disease by the Alzheimer’s Association–South Carolina Chapter. Some of the consultants also completed the Dementia Dialogues training. Because of stigma in the community surrounding an Alzheimer’s disease diagnosis, ways were established where people could seek help confidentially. Posters with business cards were placed within the churches and

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in the community so those seeking assistance for a family member with memory concerns could contact a family consultant for more information about Alzheimer’s disease without others knowing. If the family consultant found that questions were more technical or that families needed resources he or she could not provide, families were referred to the Alzheimer’s Association staff person responsible for the family consultant program.

The grant project also included a component where families could apply for vouchers to pay for respite care. Respite was provided through adult day care, companion services, home health care, personal care, in-home respite, or short-term care in a health facility. These services were available on a minimal basis prior to the grant project. Because respite services were new to many in the Lowcountry area, a Trident AAA/ADRC staff member assisted consumers when completing the application for respite vouchers, and the Lowcountry office of the Alzheimer’s Association–South Carolina chapter coordinated dementia-specific training for respite providers in the community

Project Results

For the two ADSSP grants that were conducted from 2008 through 2013, a total of 519 people with dementia and 519 caregivers were served. Of the 519 persons with dementia, 70 percent were from rural areas and 50 percent were African American. Of the 519 caregivers, 69 percent were from rural areas and 68 percent were African American.

Surveys of participants were conducted to evaluate the effectiveness of the interventions conducted during the two ADSSP projects. For the project that ran from 2008 to 2010, 95 percent of respondents to the survey indicated that they felt they had control over what services were provided and how those services were used. In addition, 100 percent of respite care recipients reported that using respite care reduced their stress level, and 99 percent reported that using respite care helped make their caregiving situation manageable. For the self-help group portion of the project, caregivers were involved in the Dementia Dialogues course. After taking the course, caregivers reported that they were more confident in the dementia care skills. Caregiver skills training programs such as Dementia Dialogues had never been available in the area previously. For the ADSSP project from 2010 to 2013, all participants agreed that the services received matched their needs. In addition, 93 percent of participants cited the program as “Very Important” to their ability to remain in the home/keep a loved one in the home.

Aspects of the program that were believed to be especially helpful included the respite vouchers. Because the respite vouchers were only available up to a finite amount, other community resources were used after grant funds were depleted to assist with providing respite services.

The stigma associated with Alzheimer’s disease, distrust of government programs, and the high rate of poverty created challenges for the project. Communities have become accustomed to government programs only serving them for a short time until grant funds expire. Many grant-funded programs were never available long enough for community members and leaders to develop any meaningful relationships or rapport with those who implemented the grant programs. In addition, the large medical university near the Lowcountry area is perceived to visit the community only when it needs data. Several community members indicated to Trident AAA

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staff that the university seeks research subjects but does not share the results of the research with the community. This reluctance to talk about Alzheimer’s disease and work with government programs emphasized the need for education of caregivers about Alzheimer’s disease and dementia and building trust within these communities. During the course of the grant, the economy suffered and some people had difficulty meeting their everyday needs of acceptable housing, food, and transportation, which made thinking about being involved in a special project to focus on respite and behavioral techniques more complicated. To help work through the many issues families were facing, the program’s coordinator obtained certification as an Information and Referral Specialist in Aging, which allowed the project coordinator to better assist project participants with their everyday needs, in addition to their caregiver needs, and get them involved in the ADSSP project.

Parts of the project are being sustained at various levels after the end of the grant. The self-help clubs have continued after the completion of the ADSSP grants. The clubs were developed to help build leaders for each group and to train volunteers using the Dementia Dialogues curriculum. In addition, costs to run the self-help clubs are minimal and ongoing resources to support the club members exist to some extent within the rural communities, such as through the Trident AAA and Alzheimer’s Association–South Carolina Chapter. Although the family consultant portion of the project is not currently active, the Alzheimer’s Association–South Carolina Chapter included the project in its strategic plan and is examining ways to replicate the project in churches throughout the state of South Carolina. Unlike during the ADSSP grant, it will be unable to have a person on staff to conduct one-on-one home visits. The Alzheimer’s Association–South Carolina Chapter will fund the project. The ADRC Mobile Van is still being used for health fairs and occasionally for memory screenings. In addition, MUSC-ARCP continues memory screenings. Respite vouchers are no longer available, but when the project ended in 2013, respite vouchers were available through other programs, such as the Family Caregiver Support Program and the Alzheimer’s Association–South Carolina Chapter.

The experiences with these ADSSP projects led to lessons related to communication and outreach that are applicable to others working with people with dementia and caregivers in underserved communities.

• The project staff learned that it is difficult to reach rural church leaders during the week because many rural churches are small and cannot afford full-time staff. To address this issue, the staff worked with others during the week, such as senior groups at churches, the Missionary Baptist Association, and rural church health ministry leaders. In addition, staff who worked with the family consultant portion of the project made an effort to meet with church leaders on Sundays or during church events, such as health fairs.

• Education about dementia and Alzheimer’s disease was essential because of the limited knowledge and understanding of the disease within the church membership. The project staff learned that when communicating with potential participants, they had to stress what the project would give back to the community. The community was more receptive to the project when they understood the benefit to them, such as receiving support from other caregivers in self-help clubs and gaining information about dementia and Alzheimer’s disease through the family consultant program.

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• The staff also learned that each community has its own politics. Often there was a gatekeeper who wanted to help people in his or her community. However, gatekeepers were nervous about allowing others to provide services to their community because they did not want their own efforts undermined or the perception of their power within their community lessened. This barrier impeded the project’s progress to some degree until rapport was built and the value of the programs was clear.

Products That Other Organizations Might Use

• There are no products available at this time.

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REFERENCES

Alzheimer’s Foundation of America. (2007, February 9). ICAN 2 : Investigating caregiver’s attitudes and needs. Retrieved September 2, 2014, from http://www.alzfdn.org/Publications/surveys.html.

Andresen, E. M., Malmgren, J. A., Carter, W. B., & Patrick, D. L. (1994). Screening for depression in well older adults: Evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). American Journal of Preventive Medicine, 10(2), 77–84.

Boston University Alzheimer’s Disease Center. (2007). African Americans and AD. Boston, MA.

Czaja, S. J., Gitlin, L. N., Schulz, R., Zhang, S., Burgio, L., Stevens, A., et al. (2009). Development of the risk appraisal measure: A brief screen to identify risk areas and guide interventions for dementia caregivers. Journal of the American Geriatrics Society, 57(6), 1064–1072.

Elder, J. P., Ayala, G. X., Parra-Medina, D., Talavera, & G. A. (2009). Health communication in the Latino community: Issues and approaches. Annual Review of Public Health, 30(1), 227–251.

Finke, B. (2014, August 13). Statement to the U.S. Senate Special Committee on Aging. Alzheimer's disease: A big sky approach to a national challenge. Available at: http://www.aging.senate.gov/imo/media/doc/Finke_8_13_14%20%28update%29.pdf.

Morycz, R. K. (1985). Caregiving strain and the desire to institutionalize family members with Alzheimer’s disease. Possible predictors and model development. Research on Aging, 7(3), 329–361.

Steffen, A. M., McKibbin, C., Zeiss, A. M., Gallagher-Thompson, D., & Bandura, A. (2002). The revised scale for caregiving self-efficacy: Reliability and validity studies. Journals of Gerontology. Series B. Psychological Sciences and Social Sciences, 57(1), P74–86.

Teri, L., Traux, P., Logsdon, R., Uomoto, J., Zarit, S., & Vitaliano, P. P. (1992). Assessment of behavioral problems in dementia: The revised memory and behavior problems checklist. Psychology and Aging, 7(4), 622–631.

Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20(6), 649–655.

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