Expert Tips to Help Black Families Navigate Dementia Care

Caregiving is often regarded as a sacred duty in the Black American community. However, supporting a loved one with Alzheimer’s or another form of dementia requires more than devotion; it also demands education and strategy. To help families navigate this journey, The Root spoke with Edna Andrews Rose, Ph.D., a specialist at the Michigan Alzheimer’s Disease Center.

Family Denial Can Delay Critical Planning

“Nobody wants to admit that Mom is not functioning like she should,” Rose said. Older couples often struggle to admit there’s a problem, and adult children may minimize dementia as normal aging. Rose encourages families to educate themselves early. The Alzheimer’s Association offers free online courses and resources.

Adapt To Who They Are Now

Without understanding the disease, caregivers may take challenging behaviors personally, leading to burnout. If you have said “you know that’s not true” to a loved one with dementia, there’s room for further education. The disease changes people, so caregivers must adapt to who they are now rather than who they used to be.

Maintain Routine Spiritual Practices

Church serves as a spiritual anchor for about 40 percent of Black Americans aged 65 and older, according to the Pew Research Center. While families may hesitate to bring loved ones with dementia to services, Rose encourages participation. “For a lot of African-Americans, long-term memory is in a church,” she said. Even if people struggle with agitation or recalling names, they may still recite scriptures and sing hymns, reconnecting them with deeply rooted memories.

Meet Them Where They Are

Rose explained that people with dementia live in the present and are not guided by past experiences or future consequences. When memory fails, they “fill in the blanks” with a mix of truth and fiction, a process known as “confabulation.”

Rose shared an example from her own experience as a caregiver for her mother, who experienced hallucinations and believed she needed to feed deceased people. Rose entered her mother’s reality and gently redirected her, saying, “I’ll feed them today, but tomorrow they go home.” Her approach resolved the behavior.

Avoid Fact-Checking

People with dementia do not need fact-checking; they need comfort, safety and connection. “If you cannot go where they are—if you’re going to be stiff-necked and not ‘believe’ what they say, you’re just going to have disagreements and arguments,” Rose said.

Prepare To Be Seen as “The Villain”

Rose noted that the primary caregiver is often the focus of a patient’s frustration. As the person enforcing boundaries and managing care, you may represent a loss of independence. If you become the target of distrust or confusion, Rose advises not taking it personally. Recognizing this as a symptom of the disease rather than a reflection of the relationship can help caregivers cope.

Know When to Step Back

Caregivers may experience overwhelm, exhaustion or grief, but Rose emphasized, “caregivers are never failures.” Sometimes a professional may be better suited to handle difficult conversations or daily care. Support can also come from respite care, adult day programs, home health aides, trusted family or church members.

Long-term care insurance, if available, can help cover these services or support care at home or in a facility. Rose also advises against moving loved ones between family members’ homes, as this can cause confusion and setbacks.

Don’t Wait to Organize Finances and Wishes

As the disease progresses, practical planning becomes just as important as daily caregiving. Establish powers of attorney, document their wishes through advance directives, and review insurance and Medicaid eligibility early. Large families should hold structured meetings and appoint a moderator to guide discussions.

Red Flags to Watch For in Care Facilities

If home care becomes too difficult, selecting the right facility matters. Rose offers two quick tests: First, check for odors — “If I smell urine, they haven’t done anything to protect a visitor from these odors. Then I know what’s happening with the patient.” Second, ask about staff-to-patient ratios. Ratios higher than eight patients per staff member may be a red flag. Once your loved one is in a facility, Rose advises building relationships with the nursing assistants and visiting regularly.