NewsTeam 10 InvestigatesThe Cost of Care


The Cost of Care: The emotional and financial toll of dementia

dementia patient and caretaker Norma Almanza
Posted at 5:57 PM, Nov 07, 2023
and last updated 2023-11-08 14:42:55-05

SAN DIEGO (KGTV) — Across the country, millions of people are living with Alzheimer's and dementia.

Millions more are caring for those family members and battling the emotional and financial challenges.

According to the Alzheimer's Association, the number of Americans with Alzheimer's or other form of dementia is expected to continue growing in the coming years because the risk of dementia increases with advancing age.

"The long duration of illness before death contributes significantly to the public health impact of Alzheimer's disease because much of that time is spent in a state of severe disability and dependence," the association said.

The Hardest Part Is The Emotional Exhaustion

"She's had dementia for probably the past 15 years," said San Diego resident Norma Almanza.

Almanza and her 98-year-old mother share a one-bedroom apartment. It's just blocks from the multi-million-dollar high rises in downtown San Diego.

For them, it's not just space that's tight.

Almanza's retired and is now financially responsible for her and her mother.

With her mother's memory fading, she needs around-the-clock care.

"I looked into hiring caregivers. That, of course, would have all come out of my money. So, it could have been a significant financial drain for me," she said.

So that unpaid job, with hours that run all day, every day, falls on Almanza.

"I realized I hadn't hugged her in a long time, in a long, long time, and that was difficult," she said.

Almanza said her mother has Medicare, which is the federal health insurance for people 65 and older. She also qualifies for Medi-Cal, California's Medicaid health program for people who don't have much income, if any.

But neither program helps her pay the day-to-day caregiving bills, Almanza said. Expenses come from whatever income and savings she and her mother have.

"I'm able to get a subsidy through Southern Caregivers, so I get 10 hours a week of caregiving help," she said.

She said it's not a lot of time, but it allows her a small break to take care of life.

"That's when you run around and do my doctor appointments. I am a single kidney because I donated a kidney at age 62, so I must stay on top of my healthcare,” Almanza shared.

ABC 10News reporter Adam Racusin asked Almanza what the most challenging part is about caring for someone with dementia.

"Somewhere in there is my mother, but the person that's in there on a daily basis is not someone who I like. So, I have to go back to the fact that there's someone in there. That's very hard, and that's very hard to feel the anger that I feel, and I know it's out of exhaustion, and that hurts me, but that's the hardest part," she said.

It’s Not Broken, Because It Was Never Built 

Almanza's mother is one of the more than 7 million people in the United States living with dementia or Alzheimer's.

It's estimated that Alzheimer's and other forms of dementia will cost the U.S. $345 billion in 2023 alone.

By 2050, dementia costs could rise to more than $1 trillion — that's about the entire economy of Mexico. It's a financial blow that will impact generations of families.

"For most people, it's an enormous financial impact that they have they struggle to find solutions to," said University of Southern California Professor Julie Zissimopoulos.

Zissimopoulos is a professor at the Sol Price School of Public Policy focusing on the economics of aging, the economics of the family, labor economics and health economics.

"It's very limited what Medicare pays for. So obviously, Medicare beneficiaries receive the health care, and that part is covered. But the biggest expense is the long-term care, and Medicare in general doesn't pay for any 24-hour long-term care. There are these pieces of benefits that you might be able to get covered, again, an issue becomes eligibility," Zissimopoulos said. "There's a lot of eligibility criteria, whether you get home health care covered and for how long, but in general, Medicare will not pay for care needed by persons living with dementia. Medicaid pays for some long-term care, but again, it's a small percentage of the population that's eligible for Medicaid and covered care."

Zissimopoulos said a lot of families fall into a patchwork of systems across the country that, in many cases, provides little, if any help for people living with dementia and Alzheimer's.

ABC 10News reporter Adam Racusin asked Zissimopoulos if, due to the financial impacts, she thought the system to take care of people was broken.

"I don't know if I'd say it's broken, because broken sort of assumes at some point it was built and that it fell down. It was never developed. We've never developed a system to deal with a disease like dementia," she said.

According to the Alzheimer’s Association, 83% of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers.

A recently released report found nearly half of all caregivers who provide help to older adults do so for someone with Alzheimer’s or another dementia.

The association found more than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias.

“The total lifetime cost of care for someone with dementia was estimated at $392,874 in 2022 dollars. Seventy percent of the lifetime cost of care is borne by family caregivers in the forms of unpaid caregiving and out-of-pocket expenses for items ranging from medications to food for the person. Caregiving refers to attending to another person’s health needs and well-being,” according to the Alzheimer’s Association.

Crowdfunding to Cover Health and Caregiving Costs

"He fell down and broke his neck in February," said Viktoria Falus.

Viktoria, her brother Andrew Frank and their father Gabor, who's living with dementia, are one of those families that has fallen through the cracks of care coverage.

"I'm looking for anything and everything to try, any opportunity to try and slow down the pace at which we're running out funds, which ultimately we're going to," Falus said. "I mean, he is first, and we are next."

The family immigrated to the United States from Hungary in the early '90s with almost nothing.

They pulled themselves from poverty to success, only to be dragged back to emotional and financial uncertainty.

"You're forced into this situation, and you have to figure it out," Falus said. "It's one bad decision against another bad decision."

Decisions like who was going to take care their father.

"Soon it became clear to us that a memory care facility was not covered by insurance or Medicare or any of these in our society," Frank said. "So, we had to start thinking very quickly because of what happened. Money was flowing out of our pockets."

Frank said he gave up his home close to work and moved into a house in the Denver suburbs to try and make it work.

"In the last three months, I've spent more money from my savings than I care to admit," Frank said. "Like my immediate savings took a huge hit. Like 40%, 50% of it is gone. Just thousands of dollars."

Gabor does get some money on behalf of Jews who suffered under the Nazis, as his father died in a Nazi work camp, according to Gabor’s children. But it doesn't come close to covering the bills.

To help cover the cost of care, Viktoria's boyfriend set up a GoFundMe, which is an online crowdfunding platform where anyone can donate to a cause on the website.

It is one of hundreds, if not thousands, of memory care fundraisers on the site.

According to a spokesperson for GoFundMe, in San Diego County there has been a 45% increase in fundraisers related to memory loss in the first four months of 2023 compared to the same period in 2022. In an email, the spokesperson told ABC 10News, "GoFundMe is dedicated to helping people help each other. We give people an easy way to make a meaningful difference and show support for the causes and communities that are most important, urgent, and relevant to them and society."

While the family has been able to raise some money, they are still behind and struggling.

And the impact is more than just financial.

"How is it going to impact my future? Well, I mean, I'm already falling apart physically. I'm not taking care of myself physically and mentally, and eventually, I mean, I know it's costing me," Falus said. "I'm sure a couple of years have already been cut down from my life expectancy, but whatever. How long? That's a good question. Yeah, I don't know. I mean, as long as it's necessary, I'm going to do what I need to do because I can't walk away."

Norma can't walk away, either.

Every day, she balances her love for her mother with exhaustion and personal grief, not knowing what comes next in this long goodbye.