"Sheriff without a badge" tackles tough question: What's the best way to care for husband with Alzheimer's disease?

They called her a “sheriff without a badge,” said Juanita Williams. 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 to help women stay sober for their children’s sake. Today Williams focuses her energy on taking care of her husband, Chuck Williams, who was diagnosed at age 61 with early-onset Alzheimer’s disease in 2003. She retired from her job in July 2011. The emotional toll of working with the women and caring for her husband had become too much to handle.

African American community and Alzheimer's disease: This is the third in a series of articles focusing on Alzheimer's disease in the African American community. James and Ann Small and Juanita and Chuck Williams are African Americans who have shared their stories about their personal journeys with Alzheimer’s disease. Andrea Parrott researched and wrote this series as part of a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.

Caregivers often experience high levels of stress that can affect their jobs and health, according to the Alzheimer’s Association. Dorothea Harris, who runs Family Memory Care for African Americans at Volunteers of America, said, “We have already lost a couple of caregivers. They’ve died. The work is just unbelievable.”

African American caregivers spend a weekly average of 30 hours caregiving and are more likely to experience a higher level of burden from caring for their loved one, according to the 2012 Alzheimer’s Association report. Williams handles or oversees all of her husband’s needs, including medication, grooming, meals, and activities.

Said Williams, “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 do it and sometimes he doesn’t. So I just gauge in another time when he’ll let me do it.” As Williams described part of her day, she concluded, “It’s a lot of work.”

The day program that Chuck Williams attended three times weekly gave Williams relief from caregiving and allowed her time to complete errands. She explained that she did not trust in-home respite care services because she does not trust unfamiliar people in her home. The day program has the more open environment that she prefers. Williams said, “The biggest challenge for me is… getting someone to, that he can be with, that I trust to keep him, maybe a few days.” As she began to consider assisted living or long-term care, she wondered how she could be confident that her husband would receive adequate care. “And not that anybody can do it [care for her husband] better than me,” Williams asserted, “That’s not what I’m saying… That’s why, wherever he goes, I will be there, like any time.”

It has been 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.

Harris mentioned distrust and the fear of discrimination as another reason few African Americans, only 19 percent according to one study, consider assisted-living or nursing home placement a future option. Preference is for keeping their loved one at home as long as possible. “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… We want to be sure that our loved one is taken care of and who can do that better than us” she said.

K. Smith* has a friend of several years living on a campus that includes assisted living, rehabilitation, and long-term care. Her friend, currently in the more advanced stages of Alzheimer’s disease, lives in a locked memory care unit. Smith’s friend, whom I’ll call Beth Anderson, does not have any family. At first, Smith said, chaplains and Anderson’s friends visited frequently, but it became harder as Anderson no longer recognized them. “They get sad or frustrated, so they don’t want to come back,” Smith explained.

While Smith recognizes Anderson’s need for long-term care, she is disappointed in what she sees as a lack of cultural competency in the staff. A report published in Public Health Reports provided a definition of a health care system that is culturally competent. It is, in part, a system that “acknowledges and incorporates—at all levels—the importance of culture… and adaptation of services to meet culturally unique needs.” For example, Smith described her friend’s communication style in cultural terms. “She doesn’t know names,” Smith said, “but ‘hi brother’ or ‘hi sister.’ There’s a call and response. There’s only a few Caucasian workers where that will happen.”

The 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, Smith explained. She said that she would like her friend to have “resources that allowed her to see reflections around the facility itself that reflected the more cultural aspects of life. They have musicians and artists that come in all the time… the facility could reach out and make sure that those persons are more diverse.” Simply playing Motown sometimes rather than Doris Day could help, Smith suggested.

After prayer and input from family, Williams felt that she could make a favorable decision for assisted living or long-term care. She believed that it could be the best option for both her husband and herself. While she credited her faith in God with helping her endure, she admitted, “I’m tired. I can’t do it all like I use to—physically and mentally and emotionally.” Her husband has noticed, she said, telling her at one point to rest. Williams remembered his concern: “He said, ‘You need to sit down because you’re running. You’re doing too much.’”

Williams 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.”

*Name changed to protect patient privacy