Alzheimer’s Disease: High Impact for Black Community
By Dianne Anderson
Like a lot of people growing up in the old school under heavy-handed parents, a pop upside the head was considered par for the course.
But for Andrea Robert, 15 years of child abuse left her with a brain injury, mild cognitive impairment, which has led her to tell everyone she meets that slaps in the head can be dangerous.
“One reason I advocate so much is that many people don’t understand that some people get this condition and it’s not always genetic. Especially in the Black and Brown community, it’s not always genetic, it’s environmental,” she said.
Later on in life, Robert noticed the little things that she easily handled for years, such as preparing lessons as an instructor at the Red Cross were becoming more difficult to manage.
“It took a long time to organize, recalling information, word-finding, losing my wallet. If I didn’t write things down, I would forget,” she said.
Another friend also told her about a family member who experienced a similar problem growing up, consistently slapped in the head by a parent. Football players also become vulnerable to head injuries and have cognitive problems later on in life.
Robert now looks to care for her brain as best she can, trying to preserve her memory and cognition through things that she can control. She pays attention to diet and food choices, has cut down on cholesterol, keeps her blood pressure regulated. She exercises, attends support groups, and is especially monitoring her stress.
It also didn’t help matters that she had an ischemic stroke, which affected her memory.
“I have mild cognitive impairment in the early stage that could turn into a form of dementia – or not,” she said. “Some of the things I’ve done, especially within the last several months, I’ve made lifestyle changes.”
In Orange County, Susannah Morales points out that family caregivers often also deal with an intense schedule and grueling demands of Alzheimer’s patients. It’s a heavy load.
Morales, LCSW and director of programs of the Alzheimer’s Association, Orange County, said that for most family members, caregiving is not a role that they have prepared for.
“But more often a role they assume over time. Our educational webinars are one of the key ways we are able to support family members from the convenience of their home, providing knowledge and skills to succeed in caring for their loved one living with dementia in Orange County,” she said.
In a recent special report, “Race, Ethnicity and Alzheimer’s in America,” people of color are found to experience more barriers than whites in getting services, or they do not feel that their health providers are culturally competent. Among other findings, 66% of Blacks believe it’s harder to access good health care for Alzheimer’s disease or dementia. The report highlights that Blacks, as well as Asians, Native Americans and Hispanic, all view the medical research to be biased against of color.
“Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,” said Carl V. Hill, Ph.D., MPH. Chief diversity, equity and inclusion officer, Alzheimer’s Association. “Clearly, discrimination, lack of diversity among health care professionals and mistrust in medical research create significant barriers to care and demand the country’s full attention.”
Susan Howland, director, Caregiver and Community Education, Alzheimer’s Association California Southland Chapter, said help is available for individuals, families and caregivers in need.
“Respite care is an important service to help family caregivers provide that care 24 hours a day 7 days a week. Sometimes, it’s referred to as the 36-hour day because it is so emotionally, physically and financially exhausting,” said Howland, who covers Los Angeles and the Inland Empire counties.
The association offers an array of services for those living with dementia and Alzheimer’s, as well as for family and friends who care for them. One key resource is their 24/7 helpline, a number that anyone can call any day or night to get answers and practical tips, as well as supportive listening support.
In terms of spotting the signs of dementia and Alzheimer’s, she said that it’s more than just misplacing the car keys.
Tons of post-it notes shouldn’t be of great concern unless those notes go beyond the person’s average baseline, or the notes are not reminding the person of what they need to do.
“Where it would be a red flag is when you have post-it notes that don’t trigger that memory, or you are dependent on them to complete day-to-day next task or next steps,” she said.
The Alzheimer’s Association links families with local resources if they have questions about their family members. Or, they can help with access to the Veterans Administration or other services provided through county, state and federal programs.
She said they also refer to state agencies with caregiver services that might help families appeal, if not enough hours have been allocated to that family.
“I think the great challenge is that Alzheimer’s and caregiving spans across industries, the healthcare system, the financial, home care. We are kind of that hub for families to understand that these programs and services exist and connect them to the programs,” she said.
To see the ALZ special “Race, Ethnicity and Alzheimer’s in America” report,
To see the impact of childhood head trauma,
For Sports, football, boxing and dementia: