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From Early to Late-Stage: How to Financially Prepare for Alzheimer’s

The disease can be financially devastating, especially for Latinos and other minorities. But there are ways to ease the burden

illustration of an older person's head opening and a network of issues popping out related to their future. Younger family members stand by to help
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Gina Jaiman cared for her mother, Ana Martinez, in her Seattle home as her mother’s dementia progressed over two years. “I didn’t want her to go to a nursing home,” says Jaiman, 53, who works in administration as a facilities coordinator. “I understand culturally — and friends who are also Puerto Rican also understand — that lots of times it’s expected for you to take care of your parents.”

That decision became more difficult to endure as her mother needed more care. “I was taking care of her and working, and it was getting very stressful,” she says.

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Jaiman is not alone. Latino families are less likely to use formal care services, such as nursing homes, when a loved one is diagnosed with dementia, according to “Latinos & Alzheimer’s Disease: New Numbers Behind the Crisis,” a report from LatinosAgainstAlzheimer's, the USC Suzanne Dworak-Peck School of Social Work and UsAgainstAlzheimer's. Though relying on family support may cut down on initial expenses, it is not without costs in the long run. 

The study, published in Innovation in Aging, estimates that by 2060, the number of Latinos living with Alzheimer’s disease will grow exponentially from 379,000 in 2012 to 3.5 million by 2060 — a growth of 823 percent. What’s more, indirect costs for Latinos with Alzheimer’s disease, including unpaid informal care and earnings lost, are projected to increase tenfold from $3.9 billion in 2012 to $39.8 billion (in 2012 dollars) in 2060, the "Latinos & Alzheimer's Disease” study says.

According to the Alzheimer’s Association, people 65 and older survive an average of four to eight years after a diagnosis, yet some live as long as 20 years with the disease. Taking care of someone as the disease progresses over an extended period can wreck even the most careful financial planning, and puzzling together how to do so can be daunting.

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Medicare doesn’t cover the cost of custodial care — the help with bathing, eating, dressing and using the bathroom — that Alzheimer’s patients eventually need. Medicaid pays for care only if income and assets are below certain levels, and in some states, it can be complicated to get coverage for care outside a nursing home.

This makes it even more challenging for people who, like Jaiman, want to care for relatives with Alzheimer’s in their own home for as long as possible, as is often the case for the millions of Latinos who are caregivers. Of the estimated 48 million caregivers in the United States, about 21 percent are Latinos, according to AARP.

Even those providing the care themselves may struggle financially if they need to cut back (or leave) their jobs as their loved one starts to need round-the-clock help. About 40 percent of Latino caregivers take a leave of absence from work, cut back on hours or stop working entirely to care for their loved one, the National Institute on Aging reports. An AARP study last year found that the average annual out-of-pocket costs for Latino caregivers was $7,167, and they spent about 47 percent of their income on caregiving activities.

Though the cost of caregiving is often high, you may be eligible for programs and support that can help.

When Jaiman’s mother ended up in the hospital in 2012 for a broken hip, a social worker let Jaiman know about resources in Seattle that could help her care for her mother — including a Washington state program that paid family members to be their parents’ caregivers. She also learned about state and local programs that provided meal delivery, medical equipment, a nurse that came to their house once a month to check on her mother’s medications and respite care to give Jaiman an occasional break from caregiving.

Since Alzheimer’s is a progressive disease, meaning the condition worsens over time, there can be some time to prepare financially for the next stages. Here are some steps to consider taking as the disease advances and some resources to help you along the way.

Protect Your Loved One from Fraud

According to a study published in JAMA Internal Medicine, poor financial decisions may be an early warning sign of Alzheimer’s and related dementias. Among the findings: Those with dementia were more likely to have missed bill payments up to six years before being diagnosed and more likely to have subprime credit ratings up to two and a half years before diagnosis. As the disease progresses, it becomes increasingly difficult for those with Alzheimer’s to manage their own finances, which makes them susceptible prey for scammers. Visit the AARP Fraud Resource Center to learn how to protect your loved one from more than 70 common types of scams.  

Stage 1: Early-stage Alzheimer’s

In the early stage of Alzheimer’s, the patient’s symptoms may vary widely. Memory lapses are common; so are misplacing objects and having trouble remembering names when introduced to people. Because those in the early stage of the disease can generally do most things independently — such as driving to work or taking part in social activities — it’s sometimes only those closest to them who may notice something is amiss.

The more financial planning that can be done soon after an Alzheimer’s diagnosis, the better prepared one will be for financial issues and expenses — especially while people can still make financial and caregiving decisions for themselves.

“The diagnosis is devastating, it’s difficult to accept, but somebody has to be able to take the wheel and plan ahead while the person is still able to make decisions,” says Robert Herrera, a financial counselor with the City of San Antonio Financial Empowerment Center, who helped care for both his in-laws when they had dementia.

Here are five steps to take:

1. Have a family meeting. “If their loved one has been diagnosed with Alzheimer’s, get together and create a plan together,” says Jen Hemphill, an accredited financial counselor and host of the Her Dinero Matters podcast who started her career as a gerontologist. “What is going to happen? This means talking about money, and that is difficult.”

Family members may be able to help in different ways. One might have more time to drive the parent to appointments and help them as they need more care. Another sibling may be able to help with financial paperwork and navigate the systems to make sure the parent is receiving all the benefits they are eligible for. Relatives who live far away may be able to visit for a while and give the primary caregiver a break.

Herrera helped care for his in-laws as part of a team — he, his spouse and his father-in-law all worked together as his mother-in-law’s dementia progressed and she needed more care. “I was able to take off from work when things got a little more difficult,” he says. “And at one point, we just moved in, and we were able to do more hands-on care. Sometimes somebody slept at night, and sometimes they didn’t.”

2. Get legal and financial documents in order. Talk with your loved one about their wishes and find out about their insurance and financial accounts. Experts suggest establishing a well-organized filing system as soon as possible for tax, legal and insurance purposes. Herrera’s mother-in-law had a file cabinet with all the important paperwork, account numbers and contact information, which became especially helpful with managing finances as her dementia progressed. The Alzheimer’s Association has a Legal and Financial Worksheet that can help organize this important information. AARP has a wealth of resources to help you during this critical stage.

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As soon as possible after a diagnosis, complete the legal documents giving a family member or trusted person the legal authority to make financial and medical decisions on behalf of the person with dementia when they are unable to do so themselves — even though they are not at that stage yet. A power of attorney lets someone make financial decisions and access bank accounts to help pay bills. A health care proxy lets the caretaker make medical decisions.

Maria Maldonado of Syracuse, New York, who cared for her mother for 10 years before she died in January, wished she would have taken this step earlier in her mother’s battle with dementia. Her mother’s Alzheimer’s was relatively stable for about eight years, then she had a stroke, and everything changed. “My mom could no longer walk on her own, eat on her own, and things became really scary,” Maldonado says. “I could not get power of attorney because my mom could not give the attorney permission to add me and she couldn’t sign, so I had to fight for rights to her bank account.”

An elder law attorney can help you with this paperwork — you can find one in your area at the National Academy of Elder Law Attorneys (NAELA) website. Some elder law attorneys work with local bar associations to provide these documents pro bono once a year, says Bridget O’Brien Swartz, vice president and fiduciary counsel at Mission Management and Trust Co. in Phoenix. Some banks require their own power of attorney forms. You can find advance directive forms by state at AARP.org, which can include a health care proxy.

3. Find out about eligibility for benefits for early Alzheimer’s. Someone with early-onset Alzheimer’s who is younger than 65 can qualify for fast-track eligibility for Social Security Disability Insurance (SSDI) benefits, which provide monthly payments. After two years of receiving SSDI benefits, they can qualify for Medicare before age 65. See the Alzheimer’s Association guide for more information about applying for these benefits.

4. Keep on top of health and drug coverage. Even though Medicare doesn’t cover custodial long-term care, it does cover other medical care. You may have to pay some out-of-pocket costs for health care that is covered by Medicare, such as deductibles and copayments, but you can buy a private supplemental policy (Medigap) to cover those expenses or a Medicare Advantage plan that provides health and drug coverage. Under Medicare Advantage, make sure the patient’s neurologist and other specialists are included in the plan’s network.

People with low income and assets may qualify for health coverage from Medicaid or a Medicare Savings Program to help with Medicare premiums and copayments. Choose a Medicare Part D prescription drug plan or Medicare Advantage plan that includes their medications. They may qualify for the Extra Help program to help pay Part D premiums and copayments if their income is below a certain level.

You can compare all of the Medicare Advantage and Part D plans available in the area using the Medicare Plan Finder, which is available in English and Spanish. Each state has a State Health Insurance Assistance Program (SHIP) that can provide free personalized assistance to help enroll in Medicare and choose plans. People can switch Part D or Medicare Advantage plans during open enrollment every year from Oct. 15 to Dec. 7.

5. Find out about local resources that can help. Even if you are providing care at home, you may get help from several programs, such as Meals on Wheels, adult day programs, transportation to doctor’s appointments, respite for caregivers, programs that provide home modifications and caregiver support groups. You can find out about many of these programs from your local Area Agency on Aging (find contact information for programs by ZIP code through the Eldercare Locator).

“We help them piece together the care that they need,” says Tatiana Fassieux, who provides counseling in English and Spanish at the Passages Area Agency on Aging in Chico, California, and for the local SHIP.

Sometimes it’s hard to take the first step to seek help. “Being Hispanic myself, I see this in the culture that they don’t seek out help because it’s a community where we want to take care of our own,” says Jessica Melchor, program services and education specialist for the Passages Caregiver Resource Center, one of 11 such centers in California that are part of the Area Agencies on Aging. “Talking with some Hispanic clients in the past, what’s been beneficial is you build that trust, so they feel comfortable calling you and contacting you for resources and providing them with tools. It’s never too early to start researching.”

The resource center helps them navigate the state and local support programs. One of the most popular is short-term respite care, which provides vouchers to pay a home health aide so family members can get a break. Eligibility is based on an assessment from a family consultant who determines the long-term care needs.

Senior centers may host regular caregiver support meetings and provide other resources. Herrera provides financial counseling in Spanish and English at senior centers in San Antonio through the city’s Financial Empowerment Center (FEC). FECs provide free one-on-one financial counseling through more than 40 local governments throughout the country.

Stage 2: Middle-stage Alzheimer’s

The middle stage of Alzheimer’s is often the longest and can last for many years. Symptoms vary from forgetting one’s personal history to wandering off. The disease becomes more apparent, and the person with Alzheimer’s will need greater care to carry out daily activities. At this stage, you may realize you need extra support to care for your loved one. Some questions to consider: Will you be able to get extra help from a home health aide? Is there an assisted living facility with a memory care unit in your area, and is there a waitlist? Does your relative qualify for any programs that can help with the costs?

Here are two of the most important steps to take:

1. Find out about the cost of different types of long-term care in your area, which can vary widely by location. In San Antonio, for example, home care workers receive about $28 per hour, 24-hour home care costs about $15,000 per month, and assisted living generally costs about $4,000, but memory care in assisted living is about $6,000 per month, and nursing home care is about $7,000 to $9,000 per month, says Byron Cordes, a professional in aging life care with Sage Care Management in San Antonio. The AARP Long-Term Care Cost Calculator can help you get an idea of these expenses.

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You can find an expert in aging life care (also known as a geriatric care manager) in your area through the Aging Life Care Association. The manager can help you figure out the options in your area, programs your loved one may be eligible for and how to navigate Medicaid and other aid systems. Care managers can help you choose a facility or home care agency, or you can pay them for a few hours to give you a road map of options and resources, says Kate Granigan, CEO of LifeCare Advocates in Newton, Massachusetts.

2. Find out if your loved one qualifies for programs that can help with these expenses. They may qualify for help with the cost of care, either from federal, state or local programs. Or they may have long-term care insurance or savings to cover the costs, at least for a while.

Consider the following programs:

Medicaid is the largest payer of long-term care costs. The rules vary a lot by state, with eligibility based on different levels of income, assets and needs. Medicaid traditionally paid for care in nursing homes, but many states have waiver programs that cover care in a variety of settings, including memory care units and home health aides who come to your home. As of 2018, 30 states had special programs that pay family members to provide care at home, such as Washington’s program that paid Jaiman to help care for her mother.

This number has been growing because of COVID-19 and caregiver shortages, says Alice Burns, associate director of the Kaiser Family Foundation Program on Medicaid and the Uninsured.

You can find out more about Medicaid in your state at Medicaid.gov, through the Area Agency on Aging or from an elder law attorney or aging life care professional.

Veterans or surviving spouses may be eligible for Aid and Attendance benefits, a frequently overlooked program that can help pay long-term care expenses in a nursing home, their own home or an assisted living facility. You can learn more about eligibility and get free help with your application from a veterans service organization. Also see the AARP Military Caregiving Guide for other resources to help with caregiving.

If there is a long-term care insurance policy, find out more about the benefits it can provide. The policies generally pay out if the policyholder needs help with at least two activities of daily living (such as bathing, dressing or eating) or a doctor certifies that they have cognitive impairment.

Let your agent or insurer know about the diagnosis, which could start the clock ticking on the policy’s waiting period, even if the policyholder doesn’t need the extra care yet. Some policies don’t have a waiting period for home care. Find out more about care requirements — for example, some policies require you to use a licensed home health aide from an agency, while others will let you pay family members to provide care.

If your loved one’s savings are used to pay for care, calculate how long that money can last for the type of care they receive, Hemphill says. Think about what will happen after the money runs out. Will the person in care eventually qualify for Medicaid? Is there a spouse living at home who will need money to live on after using the bulk of the savings for care? An elder law attorney can help you learn about the Medicaid rules in your state and determine if there is anything you can do to help qualify. 

Stage 3: Late-stage Alzheimer’s

In the final stage of the disease, symptoms become severe. As in all the stages of the disease, symptoms may vary but often include loss of speech, swallowing difficulties, hallucinations and paranoia, an inability to respond to environment and a loss of movement. As memory and cognitive skills worsen, personality changes may take place, and most individuals will need round-the-clock care.

Three steps to take:

1. Find out how to qualify for more help. You may need to advocate to get additional resources for your loved one who needs constant care. At first, Medicaid provided Maldonado’s mother with six hours of home care each week, and they had to pay for additional hours themselves. “I had to keep getting evaluations every time she went to the hospital to raise the amount of paid hours,” she says. “It took almost six months of fighting for more personal care aid hours to finally get 30 hours of care.”

2. Learn about memory care units and how to qualify for coverage. Memory care units are designed for patients with Alzheimer’s and dementia who may be active physically but need round-the-clock care. Some of these units are in assisted living facilities, rather than nursing homes, which can be more complicated to get covered by Medicaid. The Medicaid waiver rules vary by state, and some have waiting lists to cover care in memory care units. An aging life care professional can help you find out more about memory care units and other facilities in your area and how to get help covering the costs.

3. Hospice care. Medicare will cover hospice care, which provides as much comfort as possible to terminally ill patients in the last days or months of life. A doctor must certify that they have a life expectancy of six months or less. This care can be provided at home, at an in-patient hospice center or a nursing home or other facility. It provides comfort rather than medical treatment for the illness.

At the end of her life, Herrera’s mother-in-law’s condition changed dramatically, and the family contacted her doctor, who gave them a hospice referral. “On a weekend, she changed very quickly, and she needed 24-hour care,” Herrera says. She received hospice care at home. “We had nurses on call when needed, constantly watching her, and it gave us a chance to take a breather and make other plans,” he says.

Herrera and his spouse spent four years caring for his mother-in-law, then two years caring for his father-in-law who also had dementia. Although he admits that the task was emotionally and financially challenging, he values the time, energy and love he was able to provide his in-laws. “It was an honor to take care of them,” he says.

The Financial Toll of Alzheimer’s

In 2022, Alzheimer’s and other dementias will cost the nation about $321 billion. By 2050, the number of Americans living with Alzheimer’s is expected to reach 12.7 million, bringing the total cost to nearly $1 trillion each year.

Medicare and Medicaid are expected to cover $206 billion, or 64 percent, of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $81 billion, or 25 percent of total payments.

The total lifetime cost of care for someone with dementia is estimated at $377,621 in 2021 dollars.

Family members and friends provided more than $271 billion in unpaid care to people living with Alzheimer’s and other dementias in 2021. Caregivers caring for someone with Alzheimer's disease/dementia or mental health issues tend to spend more money than those caring for someone without those conditions.

Source: 2022 Alzheimer's Disease Facts and Figures