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Challenges for caregivers helping family with cognitive decline

Addressing support for dementia, Alzheimer's patients & families in communities of color
Posted: 5:15 AM, Dec 23, 2021
Updated: 2021-12-23 08:17:11-05
Medical report, stethoscope lying over x-ray of brain scan

TUCSON, Ariz. (KGUN) — Grace Wright looked forward to a relaxing, fulfilling retirement with her husband, Herbert. A few years ago, however, she started to notice he would show what she called "unusual behaviors" — repeating questions, forgetting words and losing track of where he wanted to go while driving his car.

"We knew we had to do something," Wright said. A former educator, she started asking questions and meeting with doctors. Their answers now informed how she would take care of Herbert and his dementia diagnosis.

"This is a 24-hour, seven day, unending, long journey," she said. Wright reflected on how growing up in her community in Chicago, most families did not talk about a loved one's dementia but still tried to give the best care they could.

She said at this point in her journey as a caregiver, she learned those in her shoes have to reach out for help, accepting they cannot fully support another by themselves.

Caring for loved ones

"It was a process of realization, and then seeking help, and realizing that you got to let your guard down a little bit in order to be able to navigate this problem," she said.

Arizona's growing senior population raises the probability a larger group of people statewide will eventually go through cognitive decline, leading to dementia, Alzheimer's disease or other diagnoses.

Both the Alzheimer's Association and Banner Health said data predictions point to Arizona, as a state, being on track to have the highest projected growth rate for the disease in the country.

By 2025, the Alzheimer's Association said more than 200,000 people age 65+ will be diagnosed with the disease, not accounting for other types of dementia.

Arizona is expected to have more than 200,000 people over 65 with Alzheimer's by 2025

While there is ongoing research learning more about how this decline in our brains develops, researchers and doctors also said people from communities of color have a greater risk of developing dementia. The same experts have also said these patients and their families are not getting the advice and treatment they need in time.

In cases when spouses or children take on the responsibility of caring for someone with dementia, Dr. Danielle Goldfarb with Banner Sun Health Research Institute said relatives can quickly and easily feel overwhelmed.

"Often from a place of love, sometimes there's a resentment, too, understandably, with these role changes," she said.

Goldfarb, a neurologist and dementia specialist, has guided the Wrights through the diagnosis and treatments. She said research has bared out that communities of color are accessing dementia care much less for many reasons. "I think this goes back to trust," she said.

Addressing racial disparity in health literacy

Goldfarb also said she acknowledges that past trauma from historic examples of medical manipulation, like the Tuskegee experiments, still make some patients and families reluctant to participate in research that could help cure or treat dementia. "People need to feel supported and cared for before they're going to give themselves to research," she said.

A lack of trust could then lead to not having enough health literacy, or understanding the options a person has to get medical treatment. A 2016 study from the Journal of the American Geriatrics Society found that greater health literacy could help mediate racial disparities in cognitive decline.

Another factor that may make people hesitate to reach out and receive healthcare for dementia is money. Wright said that in her retirement, she fears she can't afford to hire a third-party caregiver who would help both her and Herbert with daily tasks. "That's $25, $30, $35 an hour (at the) beginning. I'm on a modest income from retirement, social security. That's beyond our means," she said.

In the end, Wright said keeping herself and her husband comfortable and in their own home are priorities they do not want to change. "We need to start preparing for that and looking largely at lifestyle — why do we need to give up who we are and the identity we have?"

Together, Wright and Goldfarb want to help other Arizonans have honest conversations about learning to live with the disease and finding the right support to make life at least a little more stable.

Both are helping lead a new workshop series called Real Talk. The two-hour sessions began in November, and they invite medical experts to answer questions, while Alzheimer's patients, their caregivers and prominent community stakeholders lead the conversation.

Groups like Phoenix's First Institutional Baptist Church and FIBCO Family Services are helping bridge the gap between medical expertise and communities of color. As the series continues into January and February, Wright said she hopes other caregivers can form smaller peer support groups to help share their experiences and learn from each other.

Banner Health offers Real Talk workshops for caregivers of Alzheimer's patients