Wednesday, January 6, 1999

Spreading the word about Alzheimer's

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Program reaches out to minorities with information, services and support

BY SUE MacDONALD
The Cincinnati Enquirer

Marvin Lawrence of Sharonville holds a photo of his mother, who has Alzheimer's. (Tony Jones photo) | ZOOM |

        Had he been unprepared for the possibility, Marvin Lawrence might have reacted differently on his last two visits to his mother in Detroit.

        In September, she recognized him as her son but couldn't remember his name.

        Over the Christmas holidays, she mistook him for her husband, who died more than 40 years ago.

        Mr. Lawrence's mother has Alzheimer's disease, and his recent participation in a support group of Miami University colleagues who are also grappling with a family member's Alzheimer's disease prepared him for the eventuality that his mother wouldn't know who he was.

        Through his contact with other Alzheimer's families, Mr. Lawrence says he has been able to find information, advice, camaraderie and help preparing for the next stages of his mother's illness.

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Multi-Cultural Outreach program Alzheimer's symptoms

        That kind of networking is the goal of a Multi-Cultural Outreach Program launched this year by the Greater Cincinnati chapter of the Alzheimer's Association (AA).

        Specifically, AA is targeting African-American, Hispanic, Asian, Appalachian, American Indian and ethnic families who may be dealing with Alzheimer's disease and might not know about the range of services and types of care available to them.

        A recent national study showed that Alzheimer's disease and dementia-like illness are four times more common in blacks and twice as common among Hispanics, compared with whites.

Advisory council formed
        Orlean Randolph has been busy for the last 11 months in her new role as multicultural outreach coordinator for the Cincinnati-based AA, which covers 27 counties in Ohio, Kentucky and Indiana.

        She's passed out information at family and class reunions, senior centers and senior housing complexes.

        She's made personal visits and dropped off informational fliers to mosques, synagogues and inner-city churches, doctors and health clinics.

        She has stuffed informational brochures into grocery bags at food pantries in the West End and downtown Hamilton, and taped a radio program about Alzheimer's for a Korean audience.

        She's establishing a diverse Community Advisory Council that Mr. Lawrence has agreed to join.

        “One time I was with a group of Elks members en route from Michigan to Cincinnati, so I gave them a presentation on Alzheimer's disease,” Ms. Randolph says with a twinkle in her eye. “I had 50 captive people on a bus, so I took the opportunity.”

        The goal is to reach beyond the middle-class families who tend to use community services or attend support groups and to let let people of all races, neighborhoods, and economic backgrounds know that help is available.

        The Alzheimer's Association also has expanded geographically, with the spring 1998 opening of a satellite office in rural Georgetown (Brown County) and the pending 1999 opening of a Butler-Warren County satellite in Middletown.

Needs are similar
        For Mr. Lawrence, being able to talk with peers who are caring for spouses or aging parents with Alzheimer's disease has helped him understand his mother's disease. She lives in the family's home in Detroit and is cared for full-time by her sister.

        He is the only African-American in the support group, but he senses that family concerns, problems, challenges and issues are similar for all people dealing with Alzheimer's disease.

        “I would encourage anyone to talk with other people who have experience with this disease about yourself as a caregiver so that you know you're doing the right thing,” says Mr. Lawrence, manager of diversity enrollment at Miami.

        “This whole idea of denial early can be harmful, both to the individual who's the caregiver and to the person they're caring for.”

        Much of the impetus for the AA's outreach program is to break through denial, embarrassment and other factors that prevent families from understanding Alzheimer's and getting help, Ms. Randolph says.

        Some African-American and Appalachian families, for example, prefer privacy and are not as willing to share family problems in an open support group, she says.

Families want to give care
        What many families want most is information, education and links to community services — adult day care programs, respite care, home health care, transportation and the like — so they can continue to care for a loved one at home, she says.

        Sometimes, lack of transportation or neighborhood safety are barriers that make it difficult for families to leave their neighborhoods to get help or attend programs.

        But since Ms. Randolph began taking information into Tristate neighborhoods and settings, more people are calling for help.

        Clarissa Rentz, program director for AA, says phone calls from African-American families have more than doubled in the last nine months, to more than 100. Highest on their list of concerns: where to find respite care so caregivers can take a break from their duties.

        The outreach is receiving an extra boost from people like Anna Fanning, 59, of College Hill, whose husband, Frederick, 67, a retired janitor, has had Alzheimer's disease for 10 years.

        He now attends the Salvation Army's Day Community Adult Day Care program four days a week in Queensgate, allowing her to continue working part time as a minister in the West End for Common Ground Ministries. Because of the help she's received through the AA, she's able to pass on ideas and support to other families.

        “A lot of people are in denial that this is going to happen to them,” says Mrs. Fanning of College Hill. “They think it's a phase, that their parents are just getting older. Then the disease worsens, and the stress grows.

        “There's some shame that a lot of people feel,” she adds. “They're ashamed of what their family members are doing or how they're acting” (personality changes, poor eating habits or lack of modesty, all of which are typical with Alzheimer's disease).

        Once families understand the facts and symptoms of Alzheimer's disease, however, they're better able to deal with problems and find help, if they know it's available.

        “It's not anything to be ashamed of,” Mrs. Fanning says. “That's a message we want to get out. If you want to blame something, blame the disease, not the person.

        “And don't be afraid to ask for help,” she says. “You can't do this by yourself. The person (with Alzheimer's) may look healthy and be healthy, but the disease is so deceiving.”

Strain on everyone
        A recent survey of 500 caregivers by the National Family Caregivers Association found that more than half get support from siblings and family friends, yet the stresses of caregiving can complicate relationships among adult siblings and husbands/wives who are caregivers. Emotions range from resentment to respect.

        Among caregivers, 73 percent said they felt overwhelmed, 60 percent felt depressed and 52 percent felt angry about their roles. And while about one-fourth said the stress of caregiving heightened family arguments, 80 percent said caregiving increased closeness.

        Of the Alzheimer's caregivers, half were spouses and 48 percent were adult children. Nearly eight in 10 were female (wives/daughters).

        Ms. Randolph says she hopes the AA's efforts to reach greater number of families will help ease the strain on families. She foresees educational programs for teen-agers who may be feeling the strain of living in an extended-family household where a grandparent or relative has Alzheimer's disease.

        “When we talk about outreach, I'm out there,” she says, “because I want people to make the connection and I want to let them know there's help.”

       

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