Successful outreach to educate minority communities about Alzheimer's disease is built on relationships that take time to establish. A key ingredient is the ability to achieve rapport with your audience. Rapport helps engender trust, but it takes time, energy, determination, and enthusiasm, especially where loss and grief are ingrained in the culture of the community. Effective education requires knowledge of the minority community's strengths and weaknesses.
Darlyne Redd, MSSA, LSW, knows about rapport and the time it takes to develop trust. Since 1992, she has worked at the University Memory and Aging Center (UMAC) of University Hospitals of Cleveland/Case Western Reserve University. Ms. Redd is presently the Manager for Minority Outreach.
In her early years, as she was organizing community outreach to African Americans, Ms. Redd discovered that most people don't want to attend a presentation specifically about Alzheimer's disease or dementia. The stigma associated with dementia is difficult to overcome. "If you focus on AD alone, you will end up with a very limited audience. The African American community is not jumping up and down to discuss dementia and participate in research. I believe that this goes across cultures," commented Ms. Redd.
In 1997, Ms. Redd was invited to participate in "Matters of the Heart and Mind: A Grief Workshop," sponsored by the Nu Chi local chapter of the Chi Eta Phi Sorority, a national African American nurses' association. That year, the Nu Chi Chapter won a grant from the National Institute on Aging for an outreach project. Seeing an opportunity to present Alzheimer's disease education to a wider audience, Ms. Redd began partnering with the sorority to produce Grief Workshops in 1998. Since then, she has presented four "Matters of the Heart and Mind" workshops, with two forums expanding to two days to cover more topics.
"Matters of the Heart and Mind" is a unique blend of the spiritual and practical. Tips and advice are presented on how to plan for end-of-life events, and how to deal with grief that results from loss. Alzheimer's disease, of course, is about profound loss: of identity, personality, memories, mobility, and independence. Social workers, nurses, caregivers, church and spiritual workers, families and the general public make up the audience. Health care professionals learn how to improve ways they can reach out to help minority communities. They learn about specific cultural and religious customs related to death and dying among African Americans.
"We try to get our participants talking, to plan ahead so they don't end up in a crisis. We encourage them to go home and talk, put things in writing, and prepare their legal documents," says Ms. Redd. She believes that African Americans must change their ways of thinking about end-of-life planning, especially related to memory loss and Alzheimer's disease. As a rule, elder African Americans tend to maintain the mentality of an underclass, she says, even though they now have more money and are better educated than previous generations. Still, she notes, "African Americans die younger, die sicker, and die more often from violence than whites. We deal with losses, sudden changes, and abrupt endings as a way of life. It can lead to a chronic state of grief."
Ms. Redd relies upon the strong ties African Americans have with the church. Religion provides part of the foundation African American elders need for support and social contact. The Grief Workshop prominently features local spiritual leaders as panel participants. They discuss faith perspectives on life after death, end-of-life care, and the customs and rituals of death.
Workshops usually begin with an invocation from a minister and a welcome from Karl Herrup, PhD, Director of the University Memory and Aging Center. Speakers discuss the range of emotions that accompany grief and loss. Caregivers share their challenges and triumphs. Social workers identify available resources and support services. Doctors and nurses weigh the pros and cons of long-term care, and hospice and palliative care versus traditional care. Lawyers offer advice on estates and preparation of proper legal documents. Funeral directors offer guidance on funerals and burial planning. Each workshop ends with a closing ceremony - a "healing circle" led by another local minister.
And of course, Ms. Redd seeks minority candidates for participation in research. As a result of one two-day workshop, Ms. Redd had 14 inquiries specifically about Alzheimer's disease out of about 85 attendees, and 4 actually enrolled in UMAC research programs.
Ms. Redd has written a manual on how to present a "Matters of the Heart and Mind" workshop. The manual is a "how to" guide with step-by-step instructions covering:
- planning committees
- session topics and speakers
- a timeline
- sample collateral materials
- suggested publicity materials
- follow-up and thank-yous
Collaboration with other parts of the minority community is of critical importance to success. Other helpful suggestions include:
- Funding can be kept low with underwriting assistance, but charge general public participants $5, so organizers will know how many are attending.
- Check the community calendar to avoid conflicts.
- Start planning early.
- Be respectful of elders: don't call them by their first names; use surnames.
- Make sure the facility is accessible for handicapped people and make sure parking is close and free.
- Do not hold the workshop in a church because this may be offensive to certain members of your potential audience.
- Offer continuing education credits (CEUs) to health care professionals.
- "Toot your own horn" and don't forget to place yourself on your own program.
Darlyne Redd has worked hard to find innovative ways to reach out to the African American community to discuss Alzheimer's disease and dementia. UMAC is perceived to be a resource in the community, by helping to provide education on subjects rarely discussed by African Americans. More and more members of the community are learning that support services and local resources are available as they encounter the grief and loss of Alzheimer's disease.
To order the "Matters of the Heart and Mind: A Grief Workshop" Program Planning Manual, contact: Darlyne Redd, MSSA, LSW Manager of Minority Outreach University Memory and Aging Center University Hospitals of Cleveland/Case Western Reserve University Cleveland, OH 44120-1013 Tel.: 216-844-6327 e-mail: firstname.lastname@example.org .