The slightest noise kept Sarah Paul up most nights. She was exhausted trying to care for her 92-year-old mother who was diagnosed with dementia, a symptom of Alzheimer’s disease, which Black people get at twice the rate as the overall population.
“I hear her cough. I hear this or I hear that,” Paul said. “It was really getting to me.’’
The fatigue carried over into daytime chores at the height of the pandemic. Paul did laundry and prepared food-- all of it pureed because her mother was bedridden and suffered from seizures. From one day to the next, she didn’t know what to expect because, like many caregivers, especially Black caregivers, she struggles, largely on her own, to handle the welfare of a loved one with dementia.
Black families have a two-fold problem when it comes to the growing crisis of Alzheimer's disease. Although they are much more likely to get the disease, they are less likely than many other families to have the financial resources to afford outside care for the affected family member.
That’s why Rutgers-Newark has started dementia caregiver support groups in the Newark area, including one at Paul’s church, Messiah Baptist, in East Orange, New Jersey, for Black families in need. These support groups, as well as educational dinners for dementia caregivers, are sponsored by the Aging & Brain Health Alliance at Rutgers University-Newark, led by Dr. Mark A. Gluck of the Center for Molecular and Behavioral Neuroscience.
In addition to offering support, researchers at the alliance hope that the participants in these caregiver programs will also address a critical knowledge gap. The goal is to identify new genes for Alzheimer’s disease and help ensure enough Black families participate to advance an understanding of the genetics for Alzheimer's in people of African ancestry.
Gluck and colleagues at Rutgers University-Newark have begun reaching out to local Black families who have, or had, one or more family members with dementia as part of a national study being led by Columbia and Indiana universities, funded by the National Institute on Aging (NIA).
Despite high rates of the illness among Black people, a group traditionally underrepresented in research studies, not enough is known about why they are susceptible to the disease.
“In addition to social, environmental, and lifestyle factors that affect risk for Alzheimer's disease in the Black community, we need to understand more about the genetic risk factors,’’ said Gluck. “That’s really what this new study with Indiana and Columbia universities is about because many of the future treatments for Alzheimer’s may depend specifically on which genetic risk factors a person has.’’
Convincing African-Americans to participate in this and other studies stems from relationships that Rutgers-Newark has built locally for more than a decade with church and community leaders. In that time, Gluck said his team seeks to bring value to the neighborhood with programming that draws people to social events where they can learn about brain health and how to reduce their risk for Alzheimer’s.
“We want a lifetime relationship,’’ said Gluck, who also has received funding from the NIA for two additional studies of aging and Alzheimer's in African Americans. The most recent, awarded this year, will explore the links between prevention and exercise. Another, which began in 2016, known as Pathways to Healthy Aging in African Americans enrolls healthy adults, ages 60 and above, and follows them every two years to better understand what factors promote resilience to future cognitive decline and Alzheimer's disease.
Glenda Wright, a community brain health educator with the Rutgers-Newark Aging & Brain Health Alliance whose 87-year-old sister has Alzheimer’s, believes in transparency when talking about the disease, dementia, and the role seniors play in their health. Dolores Hammonds, another brain health educator, feels the same way.
“I let them know I’m African-American. I'm not going to tell them to do something that I think is going to hurt them,’’ she says.
Although a central goal of the Alliance’s community programs is public health education, recruiting people to participate in studies is a key part of its broader mission.
Wright, who is also a caregiver for her older sister with Alzheimer’s, knows the work she does with Gluck can minimize her own risk and that of other families affected by this disease, which is why she now encourages them to be part of the Rutgers studies and the national study. During presentations, she’s entertaining and serious, telling them to eat healthy, exercise and get rest at night.
Evelyn Morton, 86, of East Orange understands that she’s contributing to science and her longevity. Slowed by arthritis, Morton is taking steps to walk the halls for exercise in her building, and she’s working on an earlier bedtime instead of watching late night television.
The Alzheimer’s support groups have given members a chance to share feelings they might not be able to express to others and is a place for them to get information about the disease and how to cope as a caregiver.
It can all start with dinner and conversation, at events like a gathering planned for caregivers at Messiah Baptist Church. Relatives with dementia will find guidance from Alicia O’Connor, the recruiting, outreach and educational supervisor for the Cognitive Research Center of New Jersey (CRCNJ), an organization that does clinical trials for Alzheimer’s and cognitive disorders.
O’Connor said the days can be long and challenging for caregivers, who need to know they are not alone. “I always like to remind people there is support out there and it’s okay to ask for support.’’
Part of that is knowing what to expect and what to do when dementia takes hold. In those moments, O’Connor suggested that caregivers, if possible, infuse laughter and joy with their loved ones. But equally important, she said, is that caregivers have to take care of themselves.
“Often, caregivers don’t care for themselves because they are so worried about caring for their loved ones,’’ she said.
Wright experienced that first hand while caring for her sister.
“If you’re not careful, you can wind up on the verge of a break down. It does something to your psyche,’’ she said.
Paul is in the same boat. It’s been two years since her mother has called her name. She’ll hold her mother’s hand at the nursing home, and sometimes a smile appears from the woman who once sang in the choir and paid bills.
“She seems like she has an idea of who I am,’’ Paul said. “I understand it’s part of the illness. It’s taken me some time to deal with that.”
What she does know is that families who show up will have what she didn’t: someone to talk to in their hour of need. “It would have been helpful if I could have had someone to ask certain questions.” she said. “I think it would have helped me.’’