When Alzheimer’s meets race, Black caregivers face toughest challenges

By Andrea Parrott Twin Cities Daily Planet/New America Media | Last updated: Jun 15, 2012 - 10:45:59 AM

Juanita and Chuck Williams Photo: New America Media

MINNEAPOLIS, Minn. - Juanita Williams recalled when she was so tough she was known as a “sheriff without a badge.” For 20 years, she worked with mothers who were dealing with substance abuse. When they saw her coming to their homes, some of them tried to run away. They knew she meant business.

As a social worker for Hennepin County, Williams did everything she could to help pregnant women stay sober and others to remain sober for their children’s sake.

Today, Williams focuses her energy on the tender loving care she needs for her husband of 40 years, Chuck Williams, 70. He was diagnosed with early-onset Alzheimer’s disease in 2003. She retired from her job in July 2011. The emotional toll both of working with the women and caring for her husband had become too much to handle.

According to the Alzheimer Association, Blacks in the United States are two to three times more likely than Whites to be diagnosed with the disease.

‘Unbelievable’ caregiver stress

Family caregivers often experience high levels of stress that can affect their jobs and health, according to the Alzheimer’s Association.

And Dorothea Harris, who runs Family Memory Care for African-Americans at Volunteers of America in the Twin Cities, said, “We have already lost a couple of caregivers. They’ve died. The work is just unbelievable.”

Black caregivers spend a weekly average of 30 hours providing care and are more likely to experience a higher level of burden from caring for their loved one, according to a recent Alzheimer’s Association report.

Previously, Chuck had a successful career as a University of Minnesota-Extension recruiter and professor. He participated in Toastmasters and could give excellent impromptu speeches. Chuck was a singer and writer who enjoyed his community.

Now, Juanita oversees all of her husband’s needs, including medication, grooming, meals and activities.

It’s not easy, she explained: “He puts his clothes on, and I’ll go in there and help him because he has it on backwards. ‘No, I’ll do it. I’ll do it,’ (he says), just like a kid learning how to do that. I’ll sit there and let him do it. And then sometimes he does it and sometimes he doesn’t. So I just gauge in another time when he’ll let me do it.”

As Juanita described part of her day, she concluded, “It’s a lot of work.”

Care at home to the breaking point

Keeping Chuck at home for as long as possible was a primary goal for Juanita, and one key to doing so was enrolling him in the adult day health care (ADHC) program at the Wilder Foundation’s Community Center for Aging in St. Paul three days a week. The center offers dementia-specific programs for elders who need that specialized attention.

The ADHC program gave Juanita relief from caregiving and allowed her time to complete errands.

She felt less comfortable having in-home respite care services because she does not trust unfamiliar people in her home. The program has the more open environment that she prefers.

According to Jocelyn Schowalter, Wilder’s director of services in aging, about half of those attending the ADHC program are Black. Participants can undergo testing to help families and program staff learn what the person affected with dementia can do in the program and at home.

“The key is keeping that person busy with meaningful activities,” Schowalter said. Among the activities are physical exercise, art, music, literature and gardening.

Schowalter noted that among the professional artists working with program participants are dancers and drummers, as well as a painter who does water painting, a poet and a master gardener. Participants can work in and enjoy the produce from the garden located at the center.

Eventually, however, families may face a time when the ADHC program or home care are no longer appropriate options.

Juanita reached her breaking point as Chuck reached the advanced stages of Alzheimer’s. He could hardly speak any more, walking became more difficult and he didn’t feed himself.

“I couldn’t do it anymore,” Juanita said. “He’s like a two-year-old.”

She allowed, “We had some good years,” but Juanita found that now she couldn’t leave Chuck alone for even a moment. At night she constantly worried that he would wander out of their apartment. Her children assured her that she had kept their father at home as long as possible.

“I hate this disease. I hate it,” Juanita declared. “Our dreams, our goals that we were going to do when we retire, it’s gone,” she added.

Hardest option for Black families

It was difficult for Williams to consider assisted living or long-term care as an option for her husband. In her family, grandparents, aunts, and uncles received care at home until they died.

“In the Black family, you take care of family members at home,” she said.

As caregiving for Chuck became more difficult, though, Juanita began to consider assisted living or a long-term care facility. But she wondered where her husband would receive adequate care.

“Not that anybody can do it (care for her husband) better than me,” Juanita asserted. “That’s not what I’m saying. That’s why, wherever he goes, I will be there, like any time.”

At the end of March of this year, Chuck entered a memory-care unit at a nursing home. “I go there every day,” Juanita said. She conceded that she has had difficulty adjusting to not having him at home.

She added, “The nursing home is no picnic, and it’s the last resort.”

According to Harris of Family Memory Care, distrust and the fear of discrimination are key reasons why few Blacks—only 19 percent according to one study—consider long-term care placement as an option.

She continued, “Because of the stigma and because of the exploitation that has taken place in the African-American community, there’s fear of the nursing home.” She added, “We want to be sure that our loved one is taken care of and who can do that better than us.”

Distrust of long-term care homes among Blacks is not unfounded. Studies in recent years have shown that disparities persist between homes serving predominantly Black and White residents. For instance, a 2011 study in the Journal of the American Medical Association showed patients in homes with largely African-American clients get more bed sores.

Another study last year in Health Affairs verified that Black nursing home patients are less likely than those in mainly White facilities to receive flu vaccinations. Still other research has documented that Blacks in long-term care tend to receive less pain treatment and good end-of-life care.

Little cultural competence

An additional concern for Blacks in the Twin Cities is a lack of cultural competence among staff in facilities for rehabilitation, assisted living or skilled nursing care.

According to the National Institutes of Health, a culturally competent health care system “acknowledges and incorporates—at all levels—the importance of culture … and adaptation of services to meet culturally unique needs.”

For African-Americans, for instance, non-Black staff should know that Black seniors might typically greet someone they don’t know by saying, “Hi, Brother” or “Hi, Sister,” and expect a friendly response.

Overall, say experts, low levels of culturally sensitive interaction, combined with activities, resources and even facility decorations that do not reflect cultural diversity, can make nursing homes a lonely place for minorities. Facility activities directors should, for example, request that local arts programs send Black musicians and artists among those they typically send. Or simply playing some Motown tunes, not merely Doris Day or Frank Sinatra could help brighten the day for Black residents.

For Juanita, prayer and input from family eventually enabled her to feel that she could make a positive decision to place Chuck in a long-term care home.

She admitted, “I’m tired. I can’t do it all like I used to—physically and mentally and emotionally.”

Even Chuck noticed how weary she seemed, Juanita said. He told her at one point to rest. Juanita remembered his concern: “He said, ‘You need to sit down because you’re running. You’re doing too much.’”

Juanita agreed: “I have not had a breather,” she said, “I don’t get enough time for me. It’s not about escaping—but I can’t do it all. I cannot do it alone. It’s hard.”

This is the last article in a series focusing on Alzheimer’s disease in the Black community. Andrea Parrott wrote this series for Twin Cities Daily Planet as part of a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America. Visit www.newamericamedia.org for other articles in the series.

The Final Call