A Black Father and Son at the Intersection of Dementia, Poverty and Homelessness

A Black Father and Son at the Intersection of Dementia, Poverty and Homelessness

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Photo: Bryan Gaines is shown at his graduation with his father Melvin. (Courtesy photo)

Part 1. Read Part 2 here.

LOS ANGELES-- Bryan Gaines is a skilled care worker and patients’ advocate who knows first-hand the dearth of available facilities needed to properly house and care for uninsured homeless seniors, especially those living with dementia.

In 15 years of working with seniors with memory loss and other mental disabilities, Gaines has witnessed how poverty and the inaccessibility of quality care wreak havoc on and influence poor health conditions.

“There’s a huge intersection between the two; most people end up in a crisis, and the crisis is what leads to homelessness and things like that, because what

Dementia Care and
Racial Disparities

“Studies have shown that African Americans have higher rates of dementia than both Latinos and whites and face the highest risk of Alzheimer’s disease when compared to any other racial or ethnic group—three times as high, in fact,” wrote Karen Lincoln, Ph.D., in “California’s Caregiver Crisis: African Americans Most at Risk.”

Her op-ed, published late last year by the California Health Report, highlighted the caregiving crisis among blacks and how California is beginning to take steps to address this worsening issue.

Lincoln is Gaines’ supervisor, as well as directing USC’s Hartford geriatric center, being a member of the California Task Force on Family Caregiving, and chairing the nonprofit Advocates for African American Elders.

The racial disparities also extend to diagnosis and treatment, with blacks far less likely to be diagnosed with Alzheimer’s or prescribed approved treatments, Lincoln elaborated.

“Yet these higher rates of Alzheimer’s and other forms of dementia are just the tip of the iceberg for aging African Americans. Another major challenge is caring for this group,” Lincoln went on.

According to Lincoln, black caregivers are on average age 46, compared to white caregivers, at 52, meaning they are more apt to be “sandwiched” between care for an older person and a younger person under age 18—or are caring for more than one older adult.

Family Caregivers

Currently, there is no organized way to help families plan for the toll of caregiving, according to Toni Miles, M.D., Ph.D., professor, Epidemiology and Biostatistics at the University of Georgia’s College of Public Health.

“There is almost no work on the survivors. I call them the people around the bed,” Miles said. “Family caregivers are generally people who are unpaid; they do it because they’re related to the person by blood or they’re just really good people, who understand there’s a need and are filling it.”

Miles shares that family caregivers sacrifice and expose themselves to the stresses of caring for someone.

She continued, “That’s what makes them more special, I think. I don’t want to discount service providers, because they are underpaid for what they do.”

Miles added, “From my perspective, that is the reason to have this conversation, that funerals are not for the dead, they’re for the living; they are to help people start the healing process.”

--Charlene Muhammad

happens is the family doesn’t know what to do,” said Gaines, who holds a master’s degree in social work and is currently working on his doctorate at the University of Southern California’s (USC).

Few Housing Options

The National Alliance to End Homelessness indicates 564,708 people in the United States were homeless, as of 2016. Its report, “State of Homelessness in America,” indicates that half of the homeless population is over the age of 50. They are especially vulnerable to health and safety risks, such as cognitive impairment, vision or hearing loss, major depression, and chronic conditions like diabetes and arthritis.

Limited housing options are but one of the major impacts affecting seniors with dementia according to experts.

For instance, many large, assisted-living facilities and homes with trained 24/7 care staff exist, but they are not available to those with income levels between $500-1,500 per month, according to Marie Vernon, program director for All Hours Adult Care in Los Angeles.

Vernon said the typical rate for assisted living there is $3,000, plus something called a level-of-care option. “That could put a person’s eating, diapering and bathing assistance, and wheelchair or walking assistance in the level of $5,000 that they don’t have,” Vernon stated.

“To get around these issues, the state and federal government need to allocate more funds for homeless projects and senior care, as opposed to cutting state aid or Medicaid and Medi-Cal, in California in particular,” she argued.

“Instead, they are trimming the budget under the belts of the poor, working class, and middle class, who now need long-term care in a facility or even at home,” Vernon added.

According to Gaines, most blacks suffering from dementia, such as Alzheimer’s disease, or other types of mental disability, usually have no access to the type of quality health care that provides earlier diagnosis and treatment.” By the time they find out it’s dementia, it is pretty much too late,” he said.

Stepping Up to the Plate

Court dockets are filled with cases of relatives attempting to gain conservatorship to control a family elder’s estate. Adult Protective Services reports of financial elder abuse pile up when friends, family and neighbors yield to temptation when they learn of a senior’s failing mental health, Gaines said.

“It happened with my dad,” Gaines said, as he began telling their personal story of pain and eventual triumph. He said his father, Melvin Gaines, then 78, spiraled from being a property and business owner into poverty and homelessness because of undetected early signs of dementia. By the time Bryan got involved, much of what his father had owned was gone.

How Bryan found out about his father’s plight seemed cold and callous, he said.

It began with a phone call from one of his father’s sisters when Gaines was a college student. He said she told him, “Your daddy has Alzheimer’s disease and you need to come take care of him. He needs 24-hour care. I’m not going to be here. I’m on my way to the state line.”

His father lived alone, said Gaines, who was asked to come to the aid of a man he really didn’t know. “He wasn’t there for me, and we had an estranged relationship. I never spent one whole day. I never spent the night with him,” he said.

At first he struggled with the decision but got over his personal pain of abandonment. He shared that his grandmother played an intricate role. He recalled, “She said, ‘You can do what you want to do, but it doesn’t make it right.’”

Bryan stepped up to the plate, serving as his dad’s advocate and sharing everything he had learned professionally, until Melvin took his last breath seven years later.

High Cost, Poor Care

For as long as he could, Bryan provided 24-hour care, but the costs and tasks became too much to bear alone, he said. For instance, prescriptions cost approximately $900 for 30 pills, he said.

And after losing his house, Gaines’ father had to move into a facility, which required a $5,000 down payment plus $5,000 a month, Bryan said. In a year’s time, that cost drained most of his his father’s remaining resources--and even at that price, the care was poor.

In general, Gaines contended that the doctors lacked training about the disease, so he had to often advocate with them even keeping his dad’s primary care physician on speed dial.

Eventually, the younger Gaines felt the only way he was going to get his father the type of care he needed on limited funds was by opening the Melvin Gaines Center (aka “Melvin Memory Care”) in South Los Angeles, aiming to offer complete Alzheimer’s care.

“We did well for a long time, but it was never very lucrative. It was just enough to take care of the people and get resources to the community,” Bryan recalled. After nine years, during which the economy collapsed, the younger Gaines had to close the facility.

Gaines, who today co-chairs the group Advocates for African American Elders, said that, like other care facility owners in the black community, he struggled to affordable the high insurance cost and the expenses needed to provide adequate care.

“It was a solution for my dad in the time of need, because he would have ended up in a low-level care nursing home, with pretty much very minimal care, and a quality of life that would’ve been very sad, like most people who can’t afford it … They just decline very quickly,” Gaines said.

Senior-Sensitive Training

In addition, Gaines characterized the black community as a people still living in the Dark Ages when it comes to dementia. People still think of those with dementia and Alzheimer’s disease as “crazy” and “senile,” because that’s how they were raised, he said.

“That’s what we remember most, [our] uncle and aunt that were suffering with that. Family said, ‘Don’t worry about that. Just let him sit there,’ and as a result, people are struggling,” he said.

The black community, really the world, needs “senior-sensitive training,” Gaines added. His aim is to teach multiple entities, such as agencies and organizations, about being sensitive to the needs of elders with or without debilitating diseases.

As assistant director of the University of Southern California’s (USC) Hartford Center of Excellence in Geriatric Social Work, Gaines works from a very natural, broad perspective. The center’s service providers for seniors, utilize training, education, outreach, social competency and assessment tools to test blacks for dementia.

He explained, “We’re looking at early detection. How can we get our people involved in finding out earlier, so they can have a better quality of life, so they can get involved in the process.” Gaines fields calls mostly from people in crisis, rather than those often from more affluent communities, who call at earlier disease stages and have more planning time.

“They’re getting earlier diagnosis. You have people that are still driving and still living a long life, because they’re able to participate in the early process,” he continued.

According to Gaines, data is needed in order to provide better quality services for the seniors in his community. “The only way that we’ll be able to do that is by showing the evidence. We have to show what the impact is on individuals who are suffering with this,” he noted.

An Unspoken Kind of Love

If given the choice, he would do it all over again, said Gaines. “Had I not done that, I would not have been able to experience my dad at the level that I experienced him in; it was a different type of father-and-son relationship, different type of love through the disease and through us being together throughout that time,” Gaines said.

He reflected in vivid detail, “There was a look in his eyes and his body language expressed to me that he was thankful and he was grateful that I was there … One day he reached up – because my dad, we never hugged. We never did anything like that – we were sitting in his living room, he was trying to say something and he couldn’t say it. And finally, he reached over and put his hand on my chest and hit it a couple times, and that signified for me that he was saying, ‘Man. Thank you. Thank you!’”

Gaines went on, “He couldn’t remember my name, but he knew he was with someone who is taking care of him, and cared about him, and rescued him, and got him to a safe place, out of place in time where he was totally confused about everything that was going on in his life.”

Meanwhile, Gaines continues working to improve quality of life for seniors with dementia. One of his latest creations is a hand-held church fan that outlines how to plan for Alzheimer’s when it hits home, he shared.

“Basically, it’s every single thing that people need to think about, once they find out that the person in their family or a friend has this disease. It takes them through the whole process, all the way down to making the final arrangements; everything I did for my dad,” said Gaines.

This article is the first of two parts adapted from a longer series, which Charlene Muhammad wrote for the Los Angeles Sentinel with support of a journalism fellowship from New America Media, the Gerontological Society of America and the Retirement Research Foundation.