Families of a person living with dementia (PLWD) face a tremendous amount of out-of-pocket expenses due to a lack of financial assistance for their loved one’s medical and custodial care needs. These families should not assume that Medicare will cover their loved ones’ expenses.

Talema Harris is the Admissions and Marketing Advisor for skilled, personal care and memory care at White Horse Village, a retirement community in Newtown Square, Pa. She outlined the out-of-pocket expenses that a family of a PLWD would need to pay to cover their cost of living at the nursing facility. 

For memory care, Harris said, “Families pay $9,750 per month for a Level 1, and for a Level 2 care, the cost per month is $11,400. For personal care, Level 1 is $229 per day, and Level 2 is $283 per day. The cost for skilled nursing for a private room is $452 per day and a private suite is $475 per day.”

At White Horse Village, each patient without care has their own private room, but are accepted under a certain requirement. 

“We have to look at their medical background to make sure we can clinically take care of them. Then we look at their financial background and make sure we can take them in financially and how many years they are able to be here before we have to find them a facility that takes Medicaid,” Harris said. 

Medicaid is a health coverage plan that provides financial assistance for low-income families and elderly adults and people with disabilities. It covers nursing facility services, laboratory and x-ray services, physician services, and more. States have the choice to cover other optional services, including physical therapy, prescription drugs and dental services.

Separate from Medicaid, there is Medicare. Medicare coverage applies to dementia care only in “limited circumstances.” Medicare does not cover long-term residential care, nor does it cover custodial care, which includes dressing, personal hygiene, eating and basic mobility. 

Medicare considers this type of help with daily activities to be non-medical “custodial care.” As such, it is not deemed medically necessary, so Medicare does not cover the bill. This means that many people living with dementia (PLWD) need to rely on their own finances to cover the cost of care. It also means that family caregivers of PLWD must tap into their own financial savings as well. In certain situations, this can create a financial hardship for PLWD and their caregivers.

Hilarity for Charity (HFC) is a national non-profit organization that works to support families of people affected by Alzheimer’s disease and other dementias. HFC fundraises for the high costs of dementia caregiving and caregiver support, as well as for brain health research and education. The organization assists PLWD and Alzheimer’s disease by providing them and their caregivers with tools, knowledge and financial support

Bonnie Wattles is the Executive Director of HFC. “We see caregivers that have to leave their jobs in order to provide 24-hour care for their loved one,” Wattles said. HFC provides grants to family caregivers for paid in-home care and respite services.

Seth Rogen and his wife Lauren Rogen founded HFC when Lauren’s mother was diagnosed with Alzheimer’s at the age of 55. They recognized the importance of dementia and Alzheimer’s care and decided to use their comedy show, and their extensive network of contacts, to raise money for it. When they saw the impact they could have locally, nationally and globally, they founded HFC, a national organization. 

Wattles sets strategy and direction for the organization. She explained that their mission is “to provide care and support for families who are facing Alzheimer’s and dementia today, while also investing in brain health research and education so that we can prevent the disease for tomorrow.”

Robert Hopkins was a family caretaker for two loved ones with dementia when he was younger. “I worked full-time in high school and in college to pay for tuition, an apartment and food,” he said. Hopkins, whose grandmothers needed assistance while he was a student, explained, “Because I was required to take care of my grandmothers, I was not able to work the number of hours needed to save money until after their deaths.”

Due to the high costs of dementia care, both medical and custodial, many financial advisors suggest that the family of a PLWD have a financial plan prior to the age where signs of dementia may be showing. It is also recommended that people should have financial plans as young as their teenage years because it is important to be financially stable in case of emergencies such as these.  

“For people who are already living with dementia, financial plans would be fairly limited,” Christopher Graney, a Prudential financial advisor, said. “Unfortunately, once someone is diagnosed with the condition, that person is not eligible to purchase insurance that would help to cover the cost of the condition.”

Graney went on to say that with the high costs of dementia care and limited Medicare coverage, many families, unless wealthy, would not be able to cover the expenses and would need to exhaust their assets before becoming eligible for Medicaid. Therefore, Graney advises people to set up a financial plan for long-term care assistance ahead of time, before they actually may need the care services. 

“Medicaid will not provide any assistance until the person needing that care has spent down all of their assets,” Graney said. “This often leaves people who spent a lifetime building assets with the hope of a comfortable retirement and a goal of leaving a legacy to their heirs robbed of the ability to do so.”

Hopkins’ grandparents did not receive any financial help from Medicare or Medicaid, nor did his grandparents and parents have a financial plan. He said that it was easier to care for them from home for a while. However, Hopkins mentioned that “once their care exceeded our abilities, there was no choice other than to admit them to a nursing facility.”

Had Hopkins known about and organization like HFC and the support they provide for caregivers, he might have found additional help from trained professionals who could have eased his mental, physical and financial burdens.  

HFC takes four substantial steps to make a change and educate younger audiences on the importance of detecting the early stages of the diseases, as well as aiding in financial expenses for the caregiving. 

The four steps include: 

1. Drive Awareness and Inspire Change
2. Care for Caregivers
3. Care for Brains
4. Invest in Brain Health Prevention Research

Founded in 2012, HFC now offers programs to include online support groups, a virtual caregiver coaching program, brain health education initiatives and funding prevention research, as well as social media and special digital events.

In 2018, HFC created a series of digital courses to give lessons to high school and college students about the signs and symptoms of Alzheimer’s disease, brain health lifestyle interventions, and prevention strategies.

As of 2020, HFC had reached 260,000 people through their program grants, events and social media platforms. They raised $15 million and offered 350,000 hours of in-home care relief with the help of their Caregiver Respite Grant Program.

The program allows the caregiver some time away from the care recipient in order to recharge, rest and focus on themselves for a bit. Partnered with Home Instead, this grant provides the caregiver 3-6 months of free, professional, in-home care. Home Instead is a senior care service that provides trustworthy, trained, professional caregivers to provide their service in the home rather than the patient leaving their home.

“There are two versions of this grant; a short-term version, which we call respite recharge, and our long-term care grants, which are called extended,” Wattles said. “The short-term grant provides a grant of 50 hours to be used over the course of three months and the long-term care provides 25 hours per week every week for six months, and essentially it equates to $25 per hour of care. The grantees get a free caregiver with no out-of-pocket costs.” 

As reported in HFC’s 2021 Impact Report, their grant program has been proven to meet the needs of the caregivers, in which, “85 percent of caregivers said the care grant was ‘helpful,’ ‘very helpful,’ or ‘extremely helpful’ at meeting their needs.”  It was also reported that “91 percent of caregivers said it helped them manage their stress, while 79 percent said they felt more positive in their role as a caregiver.” Lastly, “86 percent mentioned they felt more physically prepared and 85 percent said they were more mentally prepared” to be a better caregiver and improve the quality of their caregiving.

Seth Rogan also gave his insight on the growth of the organization, saying that after they shared their own story about Lauren’s mother and what their family went through, more people reached out with similar stories as them. From there, they created their platform where other families can share their own story.  

According to the American Journal of Managed Care, “Individual costs suggest that the total out-of-pocket cost of dementia in 2020 was $66 billion. Medicare paid approximately $155 billion, while Medicaid paid $51 billion, and $33 billion for other expenses for a total of $305 billion.” This indicates that there is a need for financial planning and organizations like Hilarity for Charity to help with the financial toll of dementia caregiving.