African American Outreach Program

Boston Minority Dementia Outreach and Educational Program (BMDOEP)

The Black American population of persons over 65 is purported to be growing even faster than the White population in this age group. This suggests that there will be a larger population of Black Americans at risk for Alzheimer’s disease and related dementia (ADRD) in the coming decades. Cultural barriers in Black and White American communities limit knowledge about diagnostic, treatment and supportive services for ADRD. In the early years of our work with minority neighborhoods in Boston, we found, contrary to expectations, that many Black American families and non-clinically oriented professionals did know about dementia and Alzheimer’s disease. Many, however, did not comprehend the impact of having dementia and lacked information on the wealth of non-medical or clinical treatment methods developed over the past 15 years. They also were unfamiliar with available diagnostic and supportive services. In addition, there was a relative dearth of:

1. services for persons with dementia in or close to minority neighborhoods
2. trained dementia specialists in community-based agencies to deliver services to minority persons with dementia and their caregivers

This suggested an absence of established channels of information flow and training and educational opportunities between mainstream researchers and agencies, and minority-led agencies and individuals.

The Boston Minority Dementia Outreach and Educational Program (BMDOEP) was a 7-year program providing ongoing education and outreach efforts to respond to the unmet needs of professionals and family caregivers of minority elderly patients with Alzheimer’s disease and related dementias (ADRD). Our multi-pronged approach borrowed heavily from public health methods to meet these needs and to overcome potential barriers. Directed by Nancy Emerson Lombardo, Ph.D., and funded primarily by the National Institute on Aging (NIA), the entire program was designed to suit the cultural styles of the targeted community of Black Americans*. Inherent in the program strategy was the belief that successful outreach and education of minority individuals begins with careful needs assessment, community organization, staff education, and targeted outreach. There were three elements to the intervention: community outreach, caregiver training, and training health and social service staff. The Alzheimer’s Association assumed the role of principal partner on this project, with more than 30 other collaborators contributing to its successful implementation. The underlying goal was to improve the infrastructure and system of service for minority persons dealing with ADRD.

The BMDOEP project included six specific aims:

1. To successfully provide community outreach relating to caring for minority elders with dementia.
2. To conduct defined in-home education programs for Black American families or other key informal caregivers of minority persons with ADRD.
3. To educate over 70 selected staff of home care, health care and social service agencies serving elderly minority persons in Boston’s inner city.
4. To educate physicians and mental health specialists to enhance their ability to recognize dementia and to make referrals for evaluative/supportive services (including BMDOEP’s In-Home Family Caregiving Program).
5. To offer a series of training sessions to clergy, housing managers and other “gatekeepers” or front-line staff (non-professionals), who may be approached by families in crises, or who are in a position to notice a problem among those they encounter in their work.
6. To conduct needs assessments, monitoring and evaluation of major project activities, to determine the extent to which the above aims were successfully implemented.

We enjoyed considerable success in all of our project aims. In particular, we were highly successful in providing community outreach and institutionalizing BMDOEP; it became part of the fabric of the target Black American community, other minority communities, and both the mainstream and community-based service organization structures (specific aim #1). We also succeeded in our in-home education program; we provided a concrete service that met the needs of minority caregivers caring for their dementia-affected elder at home (specific aim #2). We exceeded our goal of educating 70 agency staff by more than 100% (specific aim #3). Our three education programs trained 167 Dementia Specialists, most of who were from community-based agencies. A dozen of these graduates also participated as in-home caregiver trainers. We were not as successful in educating physicians and mental health specialists (specific aim #4). We found scheduling clinician trainings very difficult (because of their busy and complicated schedules) and as a result of other competing project needs, we had insufficient staff resources to commit to this aim. We did however complete an assessment of agencies potentially serving minority elders to see if they provided culturally and linguistically appropriate dementia, mental health services. We also collected data on these agencies’ training needs and perceived barriers to providing services to minority elders. This agency survey was widely distributed through the aging network and should facilitate more accessible mental health and dementia services in the future. In terms of “gatekeepers” (specific aim #5), we enjoyed great success in educating housing staff. Although we expended significant effort, we were less successful in training other lay and clerical leaders and gatekeepers; competing urgent needs often hindered them from prioritizing elder and dementia care issues. Our needs assessments were invaluable in providing us with information on where it would be most beneficial to focus our efforts (specific aim #6). Ongoing monitoring of BMDOEP programs often happened on an ad-hoc rather than formal basis, with all collaborators and participants contributing ideas on how to continually improve the program. Unfortunately, agencies and trainers were often unable to provide us with the level of program documentation that we requested. This was not surprising since the majority of BMDOEP was programmatic rather than research focused, and agencies and trainers had to fit BMDOEP project tasks into their already very full schedules. However, we were able to collect a lot of internal program BMDOEP project evaluation data. The findings from this data underscore BMDOEP’s success in providing dementia outreach and education to target communities.

Every aspect of BMDOEP was designed to overcome barriers, which had previously been identified through literature reviews or experience. BMDOEP accomplished its goals by providing many Black Americans in Boston with: state of the art knowledge about care methods for persons with ADRD, assistance to family caregivers in recognizing and assessing dementia, and information on available and culturally informed services. The project also successfully educated community caregivers (e.g. physicians, health care and social services staff, clergy, housing managers, resident services coordinators, etc.) to better understand and meet the needs of minority families of elders with dementia.

BMDOEP also encouraged permanent positive infrastructure changes in service systems. It increased the capacity for mainstream service agencies, research institutions, and project team members to understand both the cultural perspectives, service needs and changes needed to better serve and educate minorities. This cultural and practical education along with project efforts had many positive benefits:

1. Better and more relevant services for minorities.
2. Better designed minority gerontological research.
3. Increased recruitment and retention of minority gerontological research participants, especially into Alzheimer’s research studies.
4. BMDOEP team members transferring knowledge and successful techniques to new projects aimed at other minority groups.
5. BMDOEP team members carrying this knowledge into other leadership roles in their personal and professional lives.
6. A transformation and diversification of local Alzheimer Association chapter leadership enhancing its capacity to serve diverse populations.
7. Internal changes by parent research institutions that promote work with diverse populations.
8. Multicultural aging conferences and workshops on organizational change that have spread some of this knowledge throughout the Greater Boston aging network.
9. Visible success of BMDOEP programs in Black American communities garnered interest from other minority communities and set the stage for a highly successful dementia outreach and education project in Boston’s Chinese American community.

With its focus on cultural appropriateness and collaboration, BMDOEP encouraged minority leadership and partnership on common goals, resulting in the successful creation of:

1. Networks connecting community agencies and/or housing entities already serving minority elders.
2. Permanent coalitions, the Boston Alzheimer’s Partnership (BAP) and the Multicultural Coalition on Aging (MCOA), that are still highly effective today.

In summary, the BMDOEP resulted in powerful and long-lasting benefits for minority families of persons suffering from dementia. BMDOEP established channels of information flow and training and educational opportunities between mainstream researchers and agencies, and minority-led agencies and individuals, that continue to make a difference in Boston’s minority and mainstream communities today.

In all our efforts, we strove to ensure that programmatic initiatives we established would continue to function as independent entities once funding for MMLAP officially came to a close; this is our project’s greatest success.

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*Black American residents in our target minority communities did not all identify themselves as “African American”, so we chose to use the term “Black American” to signify the diverse cultural, linguistic and racial populations represented. Black-American populations in Boston are very diverse and include American residents from recent or second/third generation immigrant families from: Africa, Cape Verde, a variety of Caribbean islands, Brazil and other Latin American countries etc., as well as long-time American residents with 400+ year family histories in New England, and long-time American residents with multiple generation Southern family histories.