Dementia has been a part of Reverend Linda Davis’ family for a long time. Dementia has been a part of Reverend Linda Davis’ family for a long time. Her sister had the syndrome, and so did her niece. She began to notice how often they both forgot about basic things. Her sister is a very strong and independent woman and business owner, but she slowly changed her behavior over a year after her diagnosis.
“It’s hard. You don’t know what you’ll get from day to day. It’s very emotional to see your loved ones suffer like that,” Davis said. “You have to learn different strategies to take care of them.”
For Black families facing dementia, the challenges extend far beyond managing the disease itself. The emotional toll on caregivers, particularly Black women who often take on the brunt of caregiving duties, can be immense. Experts warn that the mental health of these caregivers is often overlooked, creating a ripple effect of stress and strain within the family unit.
What is Dementia?
According to the Alzheimer’s Association, dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. The cognitive capacities, or thinking skills, begin to deteriorate with dementia symptoms to the point where daily functioning and independent living are affected. They have an impact on relationships, conduct, and emotions as well. The symptoms of dementia are progressive, meaning that they begin slowly and progressively worsen with time.
The Centers for Disease Control (CDC) states that roughly one in five Americans provide care for older adults or individuals with disabilities, and over half of these caregivers are women. However, the burden falls disproportionately on Black families. African Americans are twice as likely to be diagnosed with Alzheimer’s disease and related dementias compared to the national average. This means not only are Black families more likely to have a loved one battling dementia, but they are also more likely to be the primary caregivers, shouldering the emotional and practical weight of that responsibility.
Davis pastors Boynton Chapel Methodist Church where the average person is about 65 years old. Several church members struggle with stories similar to hers. Her mission has been to create a support group to help those families.
“We’ve been trying to partner with the University of Houston to offer resources and support for people in the Third Ward and other underserving communities,” she said. “When my sister was diagnosed with dementia and Alzheimer’s, we had no clue about who to talk to. Our family nurses helped us navigate healthcare providers, but not everyone has that assistance.”
The challenges faced by Black families go beyond simple numbers. For families where caregivers and dementia patients live under the same roof, generational differences can further complicate the situation. Members of younger generations, like Millennials, are more likely to have access to resources and open conversations about mental health.
However, older generation members may hold onto the belief of keeping family issues private, creating a wall of silence that prevents them from seeking help. This stigma surrounding mental health can be particularly detrimental for Black seniors, who might be reluctant to seek support or even acknowledge the emotional toll of caregiving, leading to a decline in well-being for the entire family.
The financial strain of caregiving adds another layer of stress for Black families. AARP research indicates that most African American caregivers are employed while caring for a loved one. This often translates to juggling work schedules, taking leave of absence, or arriving late/leaving early to accommodate caregiving needs. This constant state of imbalance can lead to burnout, financial hardship, and a decline in overall well-being for both the caregiver and the dementia patient.
Neuropsychologist Luis D. Medina, Ph.D., at the University of Houston, shares experiences similar to those of Davis. His maternal grandmother’s sister died of Alzheimer’s disease, and her daughter died of vascular dementia.
“It’s important to detect the early symptoms,” he said. “One of the big misperceptions in the Black and brown community is that these diagnoses are normal parts of the aging process.”
Warning signs
Medina said that early signs vary depending on the type of dementia and the individual. They might have trouble navigating unfamiliar territory, getting lost in their home, paying their bills promptly, struggling to manage their medication, bumping into walls regularly, or getting lost in the neighborhood while driving.
“All of these things are related to neurological changes in the brain. Treatments and interventions are the most effective,” Medina said. “My grandmother experiences this early on. She loved to cook. All her recipes were in her head, and she never wrote them down. Suddenly, she missed steps and ingredients, and things weren’t tasting the same.”
So, how can Black families navigate these complex challenges? Experts emphasize the importance of creating a support system. This may involve connecting with community organizations or faith-based groups that offer resources and respite care. Family members can also share the caregiving responsibilities, creating a more manageable workload for the primary caregiver.
Beyond building external support, cultivating empathy and self-compassion is crucial for caregivers. Educating oneself about dementia can help manage expectations and foster understanding. Taking time for self-care, whether engaging in hobbies, spending time with loved ones, or seeking therapy, is vital for preventing burnout and maintaining emotional well-being.
