WASHINGTON — It was 1994 when Barbara Harris noticed her mother, Edith Harris, would write and keep little notes. She was starting to forget things.
“She started slipping a little bit,” daughter Harris, a Baltimore resident, recalled.
It was not until 1996 that Edith Harris was diagnosed with Alzheimer’s disease, a type of dementia that causes progressive memory loss that eventually interferes with daily tasks and body functions.
“When it hit me with my mama, it went right over my head for a while,” Barbara Harris said. “I didn’t realize it was Alzheimer’s.”
But by then, her mother could not be left alone and Harris had to stop working as a nursing assistant in order to provide around-the clock care.
“I just stayed home and whatever she needed, I did,” Harris said.
“You always have to be ‘right there’”, Harris explained, noting how it was sometimes difficult to even take a shower without worrying what her mother would do while she was gone. Those with Alzheimer’s can often forget where they are and can wander.
Harris’ story is similar to that of many American families — one of constant care for loved ones with Alzheimer’s, and extreme financial difficulties.
There are over 5 million people who have Alzheimer’s disease in the United States, and 99,000 of them are Marylanders.
Harris was responsible for purchasing everything her mother needed and did not have health insurance since she stopped working. At first, it did not bother Harris because she had some money saved, but the expenses quickly added up. As a result, Harris visited free clinics for her medical needs.
Harris described how at a dental clinic in Baltimore, the dentist tried to steal her ring from her and said that staff generally treated her terribly. Harris expressed her frustration with the fact that if she was able to work, she would, and she would have health insurance.
Harris said that it was not until her mother’s disease had progressed exponentially that she reached out for government assistance, but according to Harris, the state said “she got one dollar too much.”
Harris described feeling stressed and overwhelmed about caring for her mother and the associated expenses.
But then she found the Alzheimer’s Association. The non-profit connected Harris with resources and help.
The Alzheimer’s Association put Harris in contact with a community-based program that had a health aide come to her house for two hours in the morning, so Harris could do whatever she needed to do without worrying about her mother.
“That was a big relief,” Harris said about the woman named Bonnie who came to visit the house. “She was wonderful. She came and I didn’t have nothing to worry about. It was like a gift.”
The Alzheimer’s Association has 80 chapters across the country and advocates for Alzheimer’s patients and caregivers in Washington. The nonprofit has a 24-hour help line number, provides assistance with connecting families to social workers, community programs, and tools such as medic alerts, bracelets, and enrollment in the national database.
Harris said that she was able to push through, thanks to God and prayer, and cared for her mother until she died in 2013.
Healthcare and Financial Barriers
Cass Naugle, executive director of the Alzheimer’s Association Greater Maryland Chapter, said that caring for a loved one with Alzheimer’s can be very expensive for family members, and barriers are often in place for low-income families. The biggest barrier of all is health care.
“Access to better healthcare leads to earlier diagnosis and earlier information and support for addressing the disease,” Naugle explained.
“There is a point in the disease where they are not eligible for Medicaid community services or nursing home services because they may be rather physically healthy but still need 24-hour care because of their dementia.”
Naugle said that minorities tend to care for family members in their homes throughout the course of the disease or very late into the progression of the disease. Caregivers may quit work or reduce their hours. Assisted-living programs are privately paid, which may be impossible for lower-income families to pay.
In a 2015 Alzheimer’s Association report, caregivers in 2014 provided 17.9 billion hours of assistance, “a contribution to the nation valued at $217.7 billion.”
The report found that there were 289,000 caregivers in Maryland alone who devoted 329 million hours caring for their loved ones with Alzheimer’s, without getting paid.
“Career trajectories can be changed if you have to exit the workforce,” said Dr. Linda Elam, a member of the Alzheimer’s Disease Advisory Council. “You may have lost some critical time there in regards to your own career.”
“One of the things about being poorer is that because Medicaid kicks in, their long term care would be covered. So if you are truly poor and elderly, then you are likely to be a dually eligible individual,” Elam said.
“But if you are near-poor, that means you would potentially be at higher risk because you are not poor enough to be eligible for Medicaid and you do not have the resources to pay for long-term care out of pocket,” she said. “You are more likely to be left without alternatives.”
The cost of caring for people with Alzheimer’s extends far beyond the costs for the individual families, but also impacts federal government spending.
In 2015, $112.7 billion is predicted to be spent by the federal government for Medicare, and $40.6 billion for Medicaid on Alzheimer’s patients alone.
“The aging of our population is an economic time bomb for our country for Medicare and Medicaid,” Naugle said.
Naugle said that $5 billion is spent on cancer research, while only $500 million is spent on Alzheimer’s.
“The amount of money that goes into research is not consistent with the scope of the disease,” Naugle said. “If we can reduce Alzheimer’s or delay the onset for six months, that could have a dramatic impact on Medicare and Medicaid cost.”
Federal officials have been trying to address the Alzheimer’s crisis.
The National Alzheimer’s Project Act was signed into law in 2011 by President Barack Obama, which required the secretary of health and human services to create and implement strategies to cure, treat, and diagnose Alzheimer’s disease and better care for the patients. This bill also established an advisory council, which Elam is a member of, to coordinate with the secretary to create a national plan to address Alzheimer’s disease.
The national plan has outlined multiple goals, including: “prevent and effectively treat Alzheimer’s by 2025.”
“It is a very ambitious goal,” Elam said. “Everyone acknowledges that it is a stretch goal. The good thing about it is that it gives everyone something to shoot for. It’s hard to know what can happen over the next 10 years. We’re still striving for it and we will definitely be better off by 2025, whether we hit the goal or not.”
The advisory council meets quarterly to discuss progress on the goals the group has outlined. Each year the plan is updated.
“There really isn’t one top priority,” Elam said about the goals. “We have to keep a focus on looking for effective treatment and prevention as well as making sure that care is appropriate and caregivers are well supported.”
Elam has been on the Alzheimer’s Advisory Council since early 2014.
Earlier this year, Congress also passed the Alzheimer’s Accountability Act, requiring National Institutes of Health scientists to submit their annual budget proposal directly to Congress, instead of a lengthier budgeting process previously in place. The intent of the bill is to streamline the approval process for increasing funding and research.
Naugle said that this fiscal year’s budget has an additional $320 million allocated for Alzheimer’s research.
“This will be the biggest increase in funding that we’ve ever seen,” Naugle said. “That’s really exciting.”
Beyond the financial restrictions, many families choose to keep their loved ones home for personal reasons — but the intense care required can be mentally, physically, emotionally, and financially taxing on the family.
“Most family members and loved ones would prefer to keep the person with dementia at home,” Elam said. “It’s more comfortable at home in many ways. They have more control over the aspects of the person’s life. Often times, institutionalization is a last choice.”
Naugle said that one of the most challenging issues is that many families will turn to the Alzheimer’s Association or the health system in crisis. Low-income families who are diagnosed much later are denied support and services they might have received if they had been diagnosed earlier.
African Americans are two times more likely to have Alzheimer’s disease than whites, but less likely to be diagnosed. When they do eventually get diagnosed, the disease has already progressed greatly — costing more, according to the Alzheimer’s Association.
One in seven individuals with Alzheimer’s lives alone, which increases the risk of self-neglect, malnutrition, injury, wandering, and accidental death.
Naugle said that about 60 percent of people with Alzheimer’s will wander at some point with the disease.
“Sole caregivers, they have all experienced wandering incidents because it’s so insidious you might not anticipate it the first time it happens,” Naugle said. “It doesn’t matter whether they are rich or poor, it happens to everyone”
In 2011, the Alzheimer’s Association found that 86 percent of people with memory problems had not talked to a healthcare provider.
Awareness of the disease needs to be heightened because it is spreading throughout all income groups in American society, officials warned.
“It is a disease that has a significant impact on the people who have it, but it also has a really big impact on their loved ones and their friends and families, and it is growing,” Elam said.