November is Alzheimer’s Awareness Month, but the disease is something everyone should be aware of all year-round.
Alzheimer’s disease affects nearly 7 million adults age 65 and older in the United States, according to the Alzheimer’s Association’s 2024 Facts and Figures Special Report: Mapping a Better Future for Dementia Care Navigation. And the number of Americans with Alzheimer's could increase to nearly 13 million by 2050.
Caregivers of people with Alzheimer’s disease or other dementia-related conditions are often faced with tough financial challenges. Caregivers provide emotional, physical and mental support. They often help a loved one with dressing, bathing, using the restroom, going to the doctor, managing and distributing medicine, preparing meals, grocery shopping and paying bills.
The Alzheimer’s Association special report found that “more than 11 million Americans provide unpaid care for a family member or friend with dementia, a contribution to the nation valued at nearly $350 billion. On average, this represents nearly 31 hours of care per caregiver per week, or 1,612 hours per caregiver per year.”
The study also found that caregivers and health care providers experience difficulties trying to navigate the health care system. “This could materialize as delayed detection, diagnosis and treatment of early-stage cognitive issues or mild cognitive impairment,” the study reports. “For caregivers, a detour could cause them to miss valuable or necessary educational opportunities, miss connections with community-based services for respite and behavioral health support or be unable to locate resources that could help reduce their stress.”
A young family affected by dementia
Rebecca Reyes-Clement of southeastern Wisconsin is a caregiver for her husband, Jeremiah Clement, 44. He was diagnosed in 2022 with frontotemporal dementia, a progressive brain disease that affects the frontal and temporal lobes of the brain. The couple have two children, ages 17 and 22.
The financial implications came before he was diagnosed. He was let go from his customer service job in July 2022 after showing symptoms such as memory loss and behavioral changes.
“We lost his income, and that was just after buying our house. We hadn’t been in our house a full year, and that was hard,” Rebecca says.
Rebecca’s plight is similar to that of other caregivers. She’s had to become well-versed in her husband’s condition and what’s required of her as his caregiver. Luckily, through research and speaking with other caregivers, she has been able to advocate for herself and her husband.
Early planning is critical
It is imperative for a caregiver to seek legal advice and talk with a financial planner. Early planning allows the loved one to be involved in the planning and express their thoughts and wishes about future care. A lawyer can help with legal planning, including long-term care and health care needs, arrangements for finances and property and selecting the person who will make decisions on the loved one’s behalf.
Jeremiah’s diagnosis made him eligible for the Social Security Administration’s Compassionate Allowances program. According to the SSA, the program is “a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security's standards for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children.”
Rebecca says she spent hours on the phone to get any type of disability payment. In March 2023, Jeremiah received his first disability check, but it was half of what he had been making at his job.
Jeremiah is now in hospice, with the bills piling up.
One option for Rebecca could be Medicaid, which has a “spousal impoverishment” provision, where a certain amount of the couple's combined resources is protected for the spouse.
Medicaid’s website says, “Depending on how much of his or her own income the community spouse actually has, a certain amount of income belonging to the spouse in the institution can also be set aside for the community spouse's use.”
Through Medicare, the time at which a person is found to be disabled goes back to the first disability check date, and there is a 24-month waiting period in case a person might recover. For a disability beneficiary diagnosed with amyotrophic lateral sclerosis (ALS), the 24-month waiting period does not apply, according to the SSA. Since Jeremiah had markers for ALS, Rebecca appealed the waiting period, but her appeal was denied due to the inability of doctors to do additional testing for ALS because Jeremiah’s condition had declined rapidly.
“I did a rough calculation (of all the bills) from last year,” Rebecca says. “For medical and out-of-pocket prescriptions, we were at $12,000. For other health care essentials, before he was in hospice, I had to buy undergarments, wipes, gloves myself. His walker, special locks for cabinets, door alarms, ID bracelets, cameras, pill safe — all that was $7,500.”
To help with costs, Rebecca, who is a teacher, picks up extra hours at her school. Her family also receives a benefit through Social Security for children whose parents (one or both) are retired, deceased or disabled.
“These benefits provide necessities for eligible family members and help make it possible for those children to complete school. When a parent develops a disability or dies, Social Security benefits help stabilize the family’s financial future,” the SSA website says.
“That helped offset some of (my son’s) tuition costs,” Rebecca says. “The scholarship didn’t cover everything. I learned about that through one of the online support groups I belong to.”
Other options
The Department of Health and Human Services offers grants to individuals who need assistance providing for their families to help keep loved ones in the home. Rebecca says her family received a grant for $7,400. “It is a pretty easy application,” she says. “We are using it to pay for (Jeremiah’s) adult daycare” while she works.
The Hilarity for Charity In-Home Care Grant Program, through Home Instead, offers two types of grants to provide respite care for caregivers, “giving them time to rest, recharge and focus on their personal and professional life”:
- Recharge Grant. 50 hours total of respite care to be used within three months of being awarded
- Extended Relief Grant. 25 hours of respite care per week for six months (24 weeks)
Every state also has Aging and Disability Resource Centers, which are advocates who will also help you find grants and other benefits. “It is who we have been working with for Medicare. They help support you with your needs and look for grants, benefits,” Rebecca says.
Taking care of yourself as a caregiver
According to the Alzheimer’s Association, the top five stressors for caregivers are:
- Cost of care
- Coordinating care with multiple doctors
- Securing appointments
- Getting help so the caregiver can take a break
- Finding appropriate doctors
It is important for caregivers to take care of themselves. Signs of stress, according to the National Institute on Aging, include feeling exhausted, overwhelmed and anxious. Other signs of stress include becoming easily angered or impatient, feeling disconnected from others, having trouble sleeping, losing interest in activities once enjoyed and not getting enough sleep. Physical signs could be headaches and misuse of alcohol or drugs.
The National Institute on Aging website notes, “You may worry about being a burden, or you may feel uncomfortable admitting that you can’t do it all yourself. But many caregivers later say they did too much on their own, and they wished they had asked for more support from family and friends.”
“The most challenging thing,” Rebecca says, “is feeling like you are being pulled in so many different ways. For me, I’m still parenting, trying to be the best parent I can be, trying to be a caregiver and advocating and providing the best life for Jeremiah and fulfilling my regular job as a teacher. Also, trying to make sense of how did we get here and how do I make my life have meaning again. Everything has completely changed in two years.”
Rebecca says it has been kind and helpful when family and friends ask what her family’s needs are. Sometimes it is as simple as offering leftover food to help with meals or giving them gift cards for grocery stores. Before Jeremiah was in hospice, people would offer to stay with him for an hour or two.
“My workplace has been super supportive, such as flexing my hours so I can get him to the adult daycare center and leave early to pick him up. They are doing it with the understanding that if they need me, I will volunteer for something on the weekend. Those are the trade-offs,” she says.
Through the Family and Medical Leave Act, eligible employees are entitled in a 12-month period to 12 workweeks of “unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave,” according to the Department of Labor website.
Things are starting to shift with regard to caregivers of Alzheimer’s disease. The Biden administration issued an executive order in 2023 designed to increase access to high-quality care and support for caregivers. In turn, Medicare in July 2024 launched the Guiding an Improved Dementia Experience (GUIDE) Model, which is geared toward supporting people with dementia and their unpaid caregivers. According to the Centers for Medicare & Medicaid Services website, it “aims to improve quality of life for people with dementia, reduce strain on their unpaid caregivers, and enable people with dementia to remain in their homes and communities.”
Some daily tips for caregivers
In addition to tapping resources outside the home for help, there are a few things caregivers can do at home to make things easier for themselves and their loved one who has dementia. For example:
- Try to stick to a routine of eating, dressing and bathing at the same time each day
- Ask your loved one to make to-do lists
- Put appointment reminders on a calendar
- Plan fun activities that your loved one enjoys, such as going for walks, and do them at the same time daily
- Set reminders to ensure medications are taken regularly (there are reminder apps and other smartphone tools)
The Caregiver Action Network encourages caregivers to consider using technology to ease some of their duties: “Explore new technologies that offer practical solutions for monitoring health, managing medication, or enhancing communication with healthcare providers.”
It’s OK to grieve
Rebecca says it is healthy to grieve over the losses.
“Day to day, you are motoring yourself through it to survive and be functional. It’s natural to grieve of the losses, like when he first lost his ability to drive, and now, he is losing his ability to walk. Our daughter just got married, and he is going to miss, potentially, his future grandchildren. He will miss our son graduating this year.”
Having Jeremiah at home, however, has been rewarding. And it’s what he wants. “He wants to be surrounded by his family and has always been a homebody,” Rebecca says. “Having him home, while hard, is nice, as is being able to kiss him good night and tuck him in at night in his own home.”
In conclusion, asking questions and doing research are key for caregivers to navigate financial and health implications of caring for a loved one with a form of dementia. You can find more resources and help through these websites, among others:
