**ADDGS Lessons Learned in Cultural Outreach**

**Overview**

The primary goal of the Alzheimer's Disease Demonstration Grants to
States (ADDGS) program is to improve access to home and community-based
long-term care services for people with dementia. The program has a
strong emphasis on providing services to individuals who are members of
racial or ethnic minority groups, people with limited proficiency in
speaking English, and individuals living in rural areas. Within many
minority communities, Alzheimer's disease and dementia carry stigmas.
This issue brief examines approaches ADDGS grantees have taken to
overcome cultural barriers to providing community-based dementia
services.

In March 2007, the Alzheimer's Disease Demonstration Grants to States
(ADDGS) Technical Assistance Center hosted a web-based teleconference to
discuss successful cultural outreach strategies for dementia programs.
All the teleconference participants have used ADDGS funds to develop
innovative methods of communicating with culturally diverse populations.
Individuals participating in the web-based meeting included:

-   ***Beth O'Grady,*** Director, Coalition for Limited English Speaking
    Elderly. Located in Chicago, the Coalition for Limited Speaking
    Elderly educates a wide range of limited English speaking
    populations about Alzheimer's disease and dementia

-   ***Kenneth Hepburn, PhD***, Emory University, is the developer of
    the evidence-based caregiver training program *Savvy Caregiver.*
    Currently*,* Dr. Hepburn is in the process of translating the Savvy
    Caregiver program into a product that is effective in Spanish
    speaking Latino communities

-   ***Susan Howland, MSG***, Director of Education, Alzheimer's
    Association California Southland Chapter. The Southland Chapter
    works with Asian, Latino, and African American communities to
    provide information and resources about Alzheimer's disease

-   ***Deborah Danner, PhD,*** University of Kentucky, Sanders-Brown
    Center on Aging and Alzheimer's Disease Center. The Sanders-Brown
    Center on Aging hosts the African American Dementia Outreach
    Partnership

**Grantee Recommendations**

Although each of these programs serves distinct minority populations and
the foci of their projects vary widely, the ADDGS web conference
participants agreed upon the following principles for conducting
cultural outreach. In their view, successful cultural outreach programs
must:

1.  Identify, acknowledge and address cultural and organizational
    obstacles early

2.  Develop partnerships within the community to be served

3.  Sustain relationships beyond the grant cycle

    **1. Identify, acknowledge, and address cultural and organizational
    obstacles early**

Everyone has preconceptions about individuals, organizations, and
Alzheimer's disease and dementia. To overcome these preconceptions,
dementia care organizations need to work with partners to identify
cultural preconceptions and acknowledge their own biases up front.
Organizations engaged in a cultural outreach dementia care partnership
need to take the opportunity to learn from one another.

***Understand the current practices of partner organizations and respect
their other obligations***

Cultural outreach partner organizations and community leaders often
serve a multitude of community needs, from assistance with language
issues to provision of counseling services to financial planning
information. Alzheimer's disease is just one of many issues these
organizations will encounter. A request to establish a dementia care
partnership is likely to be only one of numerous and similar requests
being considered by the cultural outreach organization. This factor
needs to be taken into account when determining a role for the cultural
outreach organization.

***Be Flexible***

Organizations with dementia care expertise should be prepared to have
some their typical educational techniques and cultural preconceptions
challenged. Also, it is important to keep in mind that the community's
needs and the needs of cultural outreach partner organizations are
fluid. Dementia care entities should be prepared to adjust their plans
or partnership arrangements when necessary.

**2. Develop partnerships within the community to be served**

Individuals from underserved communities are more likely to respond to
existing community leaders than they are to respond to an unfamiliar
organization. Similarly, community members likely have a better
understanding of how to reach out to their peers. Developing
partnerships with community agencies and leaders is key to the success
of a dementia outreach program.

***Be open, honest, and trusting with your partners***

Minority community leaders are often approached by social services or
health care organizations to assist with their outreach efforts.
Dementia experts need to be open about the limitations and
specifications of the program being proposed. If from the beginning,
dementia care experts share with minority leaders their expectations
about what they hope will be gained through partnership activities,
community leaders will be more inclined engage in those activities.

***Do not be afraid to mentor and be mentored by your partner**s*

Sometimes, it is necessary to educate community outreach organizations
about how to navigate the systems that can provide quality dementia
services to their customers. At other times, dementia care organizations
will need help in learning how to work within the framework of a given
community's traditions. Partners on both sides of the equation should
expect and not fear changing roles.

**3. Sustain relationships beyond the grant cycle**

Relationships developed with partner organizations and community leaders
can last for years. While the grant funding which served as a catalyst
to establish the partnership will inevitably end, that does not mean the
partnership has to end. Organizations engaged in a dementia care
cultural outreach partnerships can benefit from considering alternative
means of keeping collaborative projects alive and keeping the door open
for future collaboration.

**Background on ADDGS Grant Programs Discussed**

**Coalition of Limited English Speaking Elderly (CLESE)**

CLESE serves the older population in the Chicago metropolitan area. The
Coalition is comprised of 45 member organizations serving immigrant,
refugee, or migrant older adults. CLESE connects older adults with
social service organizations designed to serve people from similar
linguistic and cultural backgrounds.

As part of the Illinois ADDGS grant, CLESE partners with the Cognitive
Neurology and Alzheimer's Disease Center at Northwestern University
Feinberg School of Medicine. Another partner is the Alzheimer's
Association Greater Illinois Chapter which works with existing social
services organizations serving persons with limited English speaking
ability.

CLESE originally received a three-year ADDGS grant to reach out to
Chinese, Korean, Polish, Russian, and Spanish language organizations
about Alzheimer's and dementia. After the conclusion of that grant, they
received a subsequent three-year ADDGS grant to work within the Arabic,
Assyrian, Bosnian, Hindi, and Urdu speaking communities.

In working with community organizations serving culturally diverse
populations, CLEASE undertakes the following actions:

-   When beginning to work with the organizations serving culturally
    diverse populations, CLESE convenes a meeting to discuss the
    definition of Alzheimer's disease, how it might translate into the
    languages spoken by those served by the community organizations, and
    how persons with dementia are treated in the "home country."

-   Next, CLESE works with the organizations to translate four power
    point presentations, a medical history form, the Safe Return
    enrollment form and a short story emphasizing the need for
    diagnosis.

-   Subsequently, CLESE organizes visits to bi-lingual physicians to
    provide them with a manual on the assessment protocol for diagnosis
    of dementia and refers persons with memory problems to the
    bi-lingual physicians that speak the language in which they are most
    confident.

-   Finally, CLESE assists persons with dementia with enrollment in the
    Alzheimer's Association Safe Return program.

    **Kenneth Hepburn, Ph.D.**

Ken Hepburn is the principal designer of the *Savvy Caregiver* program,
a transportable dementia family caregiver training tool. *Savvy
Caregiver* was developed, in part, through funding from an ADDGS grant.
Additionally, using ADDGS funding the program has been implemented in
several states. The program's success led to the desire of some
researchers to translate the program into Spanish.

After a somewhat unsuccessful attempt at directly translating *Savvy
Caregiver* into Spanish, Dr. Hepburn recruited a group of researchers
from the University of Texas Health Sciences University to collaborate
on a project to transform the *Savvy Caregive*r into a program that is
not only translated into Spanish but is also culturally appropriate for
Latinos. The result will be an evidence based dementia family caregiver
training program presented in the style of a *telenovela*.

A *telenovela* is a short, Spanish-language soap opera. To make the
program culturally relevant for Latinos, key elements of *Cuidando con
Carino* will include:

-   Presentation of materials in an informative and entertaining format,
    rather than a traditional classroom setting

-   Consideration of the family as student, rather than one specified
    caregiver

-   Use of narrative to teach caregiving principles

    **Alzheimer's Association California Southland Chapter**

The Alzheimer's Association California Southland Chapter serves Los
Angeles, Riverside, and San Bernadino counties. The chapter has
developed programs to reach out to the Latino, African American,
Japanese, Chinese, and Korean communities to provide information and
services for Alzheimer's families. The Chapter currently receives ADDGS
funding to work with the Chinese and Korean communities.

When initiating a relationship with a cultural community, the chapter
takes the following steps.

-   First, it develops relationships within the communities, working
    with members of the community to identify caregivers, provide
    education, and start support groups.

-   Next, in each community, the chapter implements the Dementia Care
    Network model which is a framework to provide dementia services to
    ethnically diverse communities through a collaborative network of
    partners (from African American churches to Asian markets).

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-   The Dementia Care Network replication manual (available on AoA's
    website) describes what a dementia care network is, and provides
    step-by-step information on how to develop and sustain a network.
    The manual provides insights about and examples of how to properly
    assess the environment for implementing a dementia care network. Key
    topics addressed include:

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-   Community outreach, networking and awareness

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-   Coordination of services and service delivery

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-   Program expansion and development

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-   Evaluation of existing materials and further dissemination

    **University of Kentucky Sanders-Brown Center on Aging and
    Alzheimer's Disease**

Deborah Danner developed and manages the African American Dementia
Outreach Project (AADOP) through her work with the Sanders-Brown Center
on Aging. The AADOP is funded, in part, through ADDGS grant funds.
Project objectives are to:

-   Increase awareness of Alzheimer's disease through community
    education.

-   Provide culturally sensitive clinical care and family support at a
    memory care clinic located in an area where many African Americans
    live.

-   Establish and monitor support groups and free memory check ups.

To achieve these goals, the program took the following actions.

-   Educational outreach efforts were implemented by creating advisory
    councils comprised of community and church leaders.

-   Next, the program worked with the local Alzheimer's Association
    chapter to develop community presentations and to plan and deliver
    conferences.

-   The ADDOP hired an African American nurse to provide in-home
    assessments to potential Alzheimer's patients prior to the clinic
    visit.

-   In developing support groups, program staff found that the phrase
    "support group" did not encourage African Americans participation.
    Instead, they redesigned the groups into the more culturally
    appropriate "fellowship groups."

-   At the request of partner ministers and with their input, AADOP
    developed a resource manual "The Book of Alzheimer's" with
    comprehensive information under one cover and a chapter on
    maintaining the spirit of the individual with Alzheimer's disease.
    This resource guide was provided to African American churches for
    their libraries.

    **Obstacles to Culturally Based Dementia Outreach Programs**

    **Cultural Preconceptions**

Upon embarking on each of their distinct culturally based outreach
efforts, our experienced teleconference participants quickly came to
understand that there are cultural preconceptions of Alzheimer's and
dementia. One key recommendation from multiple participants was not to
assume that the community to which you are reaching out has the same
understanding of Alzheimer's disease as you have.

**Misconceptions about Alzheimer's disease and dementia**

There are many misconceptions about Alzheimer's within the general U.S.
population. Some believe dementia is a natural process of aging; others
believe that dementia is a 'mild form' of Alzheimer's. The communities
with which ADDGS grantees worked are no different.

-   ***Language Barriers:*** According to Beth O'Grady of CLESE, "In
    most other languages, there is no equivalent translation of
    'Alzheimer's disease.' It may translate as 'crazy' or 'dumb' or
    otherwise have connotations of negative mental illness." In order to
    overcome this initial stigma, CLESE has adopted the use of the
    phrase 'memory problems' to describe Alzheimer's and dementia.
    O'Grady does not believe that the use of this term entrenches the
    misconception that Alzheimer's is a normal part of aging. Susan
    Howland seconds O'Grady's concern, citing "preconceived ideas from
    the community about the disease" as a major obstacle to overcome.

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-   ***Cultural Stigma:*** Language is not the only barrier to
    understanding Alzheimer's disease. Deborah Danner of the AADOP
    notes, "The stigma associated with Alzheimer's disease was a major
    obstacle that kept individuals from seeking help" in the African
    American community. The stigma among African Americans in Lexington,
    KY is similar to those noticed by O'Grady---that people with
    dementia are "crazy" or insufficiently cared for by their families.

    **Defining the role of family caregiver**

Perceptions of the term 'family caregiver' also vary among cultural
communities.

-   ***Caregivers have Broader Meaning:*** Ken Hepburn notes that one of
    the reasons simply translating *Savvy Caregiver* into Spanish was
    not suitable for the Latino community is that the concept of a
    primary caregiver is not prevalent in Latino families. Instead, the
    entire family takes part in supporting the person with the disease.
    As a result, the entire format of *Savvy* needed to be redesigned
    for families rather than individual caregivers.

-   ***Reluctance to Ask For Support:*** Danner found similar ideas
    about caregiving in the African American community. One of the AADOP
    advisory groups suggested that the reason the term "support group"
    was not well-received in Lexington's African American community is
    that "African Americans are unlikely to acknowledge that they need
    support" because they are culturally inclined to "take care of their
    own." Providing care for one's aging parent is considered a natural
    role and not a burden.

    **Organizational Barriers**

In addition to facing cultural barriers to providing dementia care, each
of our ADDGS grantee participants also encountered organizational
obstacles. Most of these obstacles involved misconceptions about the
communities to which the organizations were attempting to reach out.

**Fear of Collaboration**

All four advisors recommended avoiding assumptions and keeping an open
mind about those with whom you are working. It can be difficult to
recognize existing misunderstandings and to adjust one's own view of his
or her work in order to understand outside perspectives. For example,
ADDGS teleconference participants cited the following examples.

-   ***Misconceptions About Who You Are:*** Susan Howland cited a
    distrust of the Alzheimer's Association in the communities she
    serves as an obstacle. Many members of the African American and
    Asian communities in the Los Angeles area thought of the Association
    as a white, Jewish organization.

-   ***Impact of Past History:*** Danner faced similar barriers to
    reaching the African American community in Lexington. She writes,
    "An often unspoken yet enduring barrier was related to the
    historical treatment of African Americans in Kentucky, Many African
    Americans currently suffering from Alzheimer's disease remember when
    they had to file a lawsuit to attend the University of Kentucky. At
    the beginning of this grant, these older African Americans did not
    want to have anything to do with the University of Kentucky." She
    goes on to discuss the mistrust of health care providers and the
    community ministers' fears of their congregations being used as
    'guinea pigs'.

-   ***Sharing Ownership to Achieve Goals:*** Hepburn encountered
    unexpected difficulty in his own ability to share ownership of a
    product that he had designed and allow it to become something
    culturally relevant for Latinos. He describes it this way, "It's
    been a great learning experience for me, watching something I feel
    great ownership for (Savvy Caregiver) get turned over in a way that
    some new entity (Cuidando con Carino) was produced for which I feel
    considerably less ownership. These issues remain somewhat unresolved
    but not contentious." While he quickly learned that he would need to
    collaborate in order to develop an appropriate product, he learned
    that he needed to share ownership of the new project in order to
    redesign his model for a Latino audience.

    **Logistics of Collaboration**

Determining what one agency or organization can offer another in terms
of time, resources, and financial support for a project can be
cumbersome. In some of our participant's situations, the size of the
organizations involved and their major foci varied. Below are
descriptions of some key lessons learned in partnership.

-   ***Respect Other Priorities:*** For O'Grady, based in Chicago,
    working with small, ethnic-specific social services organizations
    means that she has to consider that while her work is about
    Alzheimer's disease, the agencies with which she is partnering
    address a multitude of issues. It has been important for her to
    remember that they have other priorities.

-   ***Understand Partnership Expectations:*** Howland, based in Los
    Angeles, notes that local agencies are often approached by multiple
    organizations and voluntary health associations. She recommends that
    those embarking on this type of relationship "respect their time and
    other obligations." She also cautions that the financial support of
    partnerships often comes with specific obligations. All participants
    in these arrangements must fully understand the expectations of the
    partnership.

-   ***Make Promises You Can Keep:*** Danner in Lexington stresses the
    importance of being honest with partners and not making promises you
    cannot keep. She continues, "The community is justified in asking
    what will happen to your program when grant funding ends.
    Organizations working in underserved communities should be prepared
    to answer this question."

    **Developing Partnerships to Overcome Obstacles**

The most often cited recommendation of our experienced ADDGS program
developers was to develop partnerships with leaders or gatekeepers
within the communities to be served. These partnerships come in many
forms, from hiring staff from those communities, to entering into formal
contracts with ethnicity based organizations, to forming advisory
committees of community leaders.

**Hiring within the Communities to be Served**

Examples of how projects hired staff and worked with culturally
appropriate collaborators include:

-   ***Hire Culturally Appropriate Staff and Volunteers:*** Danner
    recommends hiring staff and recruiting volunteers from within the
    community you are trying to serve as often as possible. Her clinic
    hired an African American physician on the advice of one of her
    advisory committees. She found that the African Americans in the
    community sometimes feel more comfortable visiting an African
    American physician. Much of this is attributed to the historic
    relationship between the University of Kentucky and the African
    American community.

-   ***Work with Culturally Appropriate Collaborators*:** Hepburn found
    Latino researchers who worked in a clinical setting that already
    served a Latino community to collaborate on his project.

    **Working with Key Culturally Based Organizations**

    ADDGS Grantees have identified several ways to reach out to
    culturally diverse populations. Some examples can be found below.

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-   ***Keep the Umbrella Open:*** CLESE currently works with seven
    ethnicity based social services agencies under the ADDGS grant. Two
    of the agencies requested to be included in the dementia outreach
    program after hearing about it and identifying people with possible
    dementia in their communities.

-   ***Support Local Businesses:*** The Alzheimer's Association
    California Southland Chapter works with some local ethnicity based
    organizations but also strongly recommends developing relationships
    with community members by supporting local businesses. Some examples
    are advertising on grocery bags at ethnic food stores or purchasing
    food from local retailers for support group and advisory group
    meetings.

-   ***Offer Key Leaders A Seat At The Table:*** Danner developed her
    advisory group of ministers by contacting ministers of well-known
    African American congregations in the area. This proved tremendously
    effective, as the ideas for successful programs such as the well
    attended (300+) dementia conferences for African Americans were
    developed by the ministers.

    **Sustaining Effective Programs Beyond the ADDGS Grant Cycle**

According to ADDGS web conference participants, a major benefit of
focusing grant efforts on outreach and education is that the outcome of
your grant never expires. Once a bilingual physician or an ethnic agency
staff person is educated about the availability of supportive services
for persons with dementia and their families, those individuals will
continue to refer persons with dementia to appropriate resources.
Additionally, the relationships developed through the grants often
continue to function after the grant cycle has concluded.

Some examples of the enduring impact of ADDGS Cultural Outreach grant
activities can be found below.

-   ***Developing Evidence of Program Adaptability :*** Hepburn, having
    worked to develop a replicable training program, believes that
    *Cuidando con Respeto* will be useful until the caregiving
    strategies become outdated. This project has demonstrated the
    transferability of *Savvy Caregiver*.

-   ***Development of Reusable Products:*** O'Grady notes that
    translated materials and community education will last for some
    time, but adds, "What cannot be sustained is to educate additional
    physicians or to provide the intense counseling that usually
    accompanies enrolling a client in the program." These are services
    for which CLESE plans to identify additional funding in order to
    continue its dementia outreach program in its current form.

-   ***Building Something to Sustain with Existing Organizational
    Resources:*** Howland agrees. She suggests that the Alzheimer's
    Association California Southland Chapter will continue its outreach
    efforts at some level without grant funds. However, the formal and
    large scale outreach, including full-time staff, program supplies,
    media placement, agency staff training, and other program costs
    cannot be funded through existing organizational funds. Grant funds
    were used to initiate the formal and large-scale outreach in
    communities previously not reached, but the resources necessary to
    continue work in the communities once they have been reached
    formally can be imbedded within existing organizational budgets.

-   ***Community Leaders Adopt Program as their Own:*** The African
    American Dementia Outreach Partnership, under the leadership of
    Deborah Danner, has formed strong enough relationships in the
    community to secure outside funds. When the program first began, the
    community was wary of becoming involved in a demonstration program,
    fearing that the community members would be used as 'guinea pigs.'
    Deborah secured a commitment from the Sanders-Brown Center on Aging
    that the memory care clinic for African Americans would be sustained
    without ADDGS funds. The memory clinic will be funded in part
    through a National Institute on Aging Alzheimer's Disease Center
    grant and partly through University funds. What the University could
    not sustain on its own were the successful dementia conferences.
    Upon receiving word that future conferences would not be possible
    without additional funds, the African American partner churches
    offered to fund between \$30,000 and \$50,000 for continued
    community outreach efforts.