Yale Study Exposes Alarming Dementia Care Gaps—Long-Term Care Insurance May Be Your Best Defense

As the U.S. population ages, a new Yale study reveals what many families have experienced firsthand: most older adults living with dementia are falling through the cracks.

According to research from the Yale School of Public Health, more than 86 percent of dementia patients in the United States are not receiving any formal care.

Let that sink in—millions of Americans with cognitive decline and serious health needs are left without trained help. And for many families, this translates to unpaid caregiving, depleted savings, and emotional burnout.

Yet while the headlines are grim, there's a solution—but only if you act early. Long-Term Care Insurance can cover home care, memory care facilities, and other services when dementia strikes. The catch? You need to be in relatively good health to qualify, which means planning before problems start.

Let's break down what this study found—and how you can protect yourself and your family.

Yale Study: Most Americans with Dementia Go Without Formal Care

The study, led by researchers Yuting Qian and Zhuoer Lin, compared dementia care systems around the world. It found that while countries like Denmark and the Netherlands have strong formal support funded by government systems, the U.S. relies heavily on a disjointed mix of Medicare, Medicaid, and private pay options, including Long-Term Care Insurance.

"We found an alarming message that both developed and developing countries face common care deficits for dementia," said Qian, a doctoral candidate at Yale.

The biggest takeaway? In the U.S., about 86% of dementia patients receive no formal care at all.

That care gap leaves families scrambling. Often, relatives step in as caregivers, juggling their own work, health, and finances while trying to meet complex needs like memory loss, wandering, personal hygiene, or medication management.

In nations like China, the situation is even more severe—99% of dementia patients receive no professional care. However, in Denmark and the Netherlands, where centralized care systems cover both medical and daily care needs, the results are vastly better.

The study suggests the issue in the U.S. isn't just about capacity—it's about funding and planning.

Chronic Dementia Care Not Covered

In the United States, Medicare only pays for limited, short-term skilled care—typically up to 100 days of skilled care in a facility following hospitalization. It doesn't cover long-term supervision or help with daily activities like dressing or eating, which are essential for people with dementia.

"Older adults have only limited coverage of long-term care through Medicare and Medicaid, while select wealthy individuals can buy commercial insurance," said Xi Chen, the study's senior author and an associate professor at Yale.

Medicaid does cover long-term care, but only for those with limited income and assets. To qualify, you often have to spend down your savings, pay for care out of pocket, and sacrifice financial independence.

Private health insurance doesn't fare much better—covering rehab, not routine care. That's where Long-Term Care Insurance enters the picture.

Quality Care Can Make a Difference

Alison Johnson, who operates an Amada Senior Care franchise in the Chicago area, says many families underestimate how capable and engaged someone with early to mid-stage dementia can still be.

“At this stage, many people living with dementia are still enjoying regular activities,” Johnson said.

They often know their surroundings and who is with them. They have a feeling of comfort and peace.

But she’s seen firsthand how premature moves into memory care can sometimes backfire.

“I’ve worked with clients who moved loved ones into assisted living early in the process and unfortunately saw them decline rapidly,” she said.

My wish for families is that they knew how easy keeping someone at home can be—with just a little infrastructure, a little training, and a little professional support.

Johnson says the right support system can restore quality of life not just for the individual with dementia but for their entire family.

She recalled working with a 92-year-old man who had been living with dementia for seven years.

Just yesterday, his caregiver took him outside to help his son with spring yard work, followed by a trip to get a root beer float. He didn’t stop smiling the entire time.

On the ride home, the caregiver took a wrong turn. “He didn’t miss a beat—he corrected her, dictated each turn, and even suggested a shortcut,” she said.

He doesn’t remember her name or exactly why she’s there—he just knows she’s a friend of the family. He can’t tell you who the president is, but he knows he’s in the home he’s lived in for 63 years, surrounded by familiar things, with his favorite foods in the fridge.

“He’s happy, safe, and content,” Johnson added. “I’m not sure any of us can ask for more at 92.”

Hidden Cost of Doing Nothing

The price of inaction is steep. According to the LTC News survey of long-term care costs, the national average cost of memory care in 2025 continues to rise—and the base rates don't tell the full story.

Here's what memory care costs look like in several locations before surcharges:

• Chicago, IL – $6,790/month
• Charlotte, NC – $6,253/month
• Phoenix, AZ – $5,622/month
• San Jose, CA – $7,460/month

But those are just the starting rates. Many facilities add surcharges of up to $2,000 a month depending on the level of supervision, medication management, and personal assistance required.

The cost of long-term care services continues to rise, so you are age 50, expect much higher costs when you are in your 70s and 80s.

These costs can adversely impact your lifestyle and, for many, quickly drain retirement savings, especially if care is needed for several years. Without a plan in place, families may be forced to make decisions in crisis—often sacrificing their own income, assets, or health in the process.

Long-Term Care Insurance Pays for Dementia Services—But Timing Matters

Long-Term Care Insurance can be a lifeline when cognitive decline begins. It pays for:

• In-home caregivers and supervision
• Adult day care
• Memory care or Alzheimer's facilities
• Assisted living
• Nursing home care

Policies typically also include care coordination, allowing families to access professionals who can help manage a care plan.

But here's the critical catch: you can't wait until you're already showing signs of dementia or physical decline. Once a diagnosis like Alzheimer's is on your medical record, it's impossible to qualify.

That's why most people buy LTC Insurance between ages 47 and 67 when premiums are more affordable, and you're more likely to meet health underwriting standards.

Patti Goldfarb, a Certified Senior Advisor in Ridgefield Park, NJ, says Long-Term Care Insurance plays a crucial role in helping families afford the cost of caring for a family member with dementia. 

Dementia care, especially memory care, is expensive due to the need for 24-hour supervision, specialized staff, and tailored activities. LTC Insurance helps cover these costs, which can include room and board in memory care facilities, skilled nursing, personal care like bathing, eating, and toileting, medication management, and therapeutic service.

Many experts agree that one of the biggest mistakes you can make is waiting until it's too late.

Once you or your loved one needs help, your options are gone if you haven't already secured coverage.

Why Work with a Long-Term Care Insurance Specialist?

LTC Insurance isn't one-size-fits-all. Different companies offer varying definitions of benefits, waiting periods, inflation protection, and coverage limits. Some specialize in hybrid life+LTC policies with cash value; others offer traditional plans.

A Long-Term Care Insurance specialist understands underwriting standards and how to match your health history with the right insurer. They can often find affordable options you wouldn't locate on your own or through general insurance agents.

Many families have been able to find plans with premiums under $150/month—especially when applying younger and in good health.

The Human Side: What Families Face Without Support

Zhuoer Lin, one of the study's authors and now an assistant professor at the University of Illinois Chicago, emphasized that dementia care requires skill and structure—something informal caregivers often can't provide alone.

"If family members have to leave work because of caregiving responsibilities without financial support, a greater burden is placed on the family as a whole," Lin said.

Consider the case of 62-year-old Susan from Johnston City, Tennessee, whose mother developed dementia after a stroke. With no LTC policy and savings dwindling, Susan was forced to quit her job to provide care full-time.

I thought we were prepared," she said. "But the system wasn't there for us. I wish someone had told me about Long-Term Care Insurance 10 years ago.

What Needs to Change—And What You Can Control

The Yale team recommends systemic reforms to Medicaid and Medicare to better reflect the long-term nature of dementia. Policy suggestions include:

• Expanding Medicare to include chronic care services
• Revising Medicaid eligibility so families aren't forced into poverty
• Exploring new technologies (like robotics and AI) to supplement human care

But these proposals could take decades—if ever to become reality. Outside of Medicaid and limited tax incentives for buying private Long-Term Care Insurance, the government will unlikely offer broad long-term care coverage. Early planning remains the most dependable solution for individuals and families navigating aging today.

So, What Should You Do?

If you're between ages 47 and 67, in reasonably good health, and planning for retirement, now is the time to consider LTC Insurance. Here's what you can do:

• Use the LTC News Cost of Care Calculator to see what care costs in your area
• Talk with a qualified LTC Insurance specialist who can evaluate your health and concerns and suitability for coverage
• The specialist will provide you with accurate quotes from multiple insurers offering long-term care solutions
• Be sure any coverage option meets federal guidelines under Section 7702(b)
• Discuss your plans with your family so expectations are clear
• Don't wait for a diagnosis or decline in your health—LTC Insurance depends on your current health, not future needs

Thought to Take with You

It's easy to think dementia won't happen to you. But the numbers say otherwise: 1 in 3 older adults dies with Alzheimer's or another form of dementia, according to the Alzheimer's Association.

The Yale study shines a light on a harsh reality, but it also offers a call to action. You can't fix the entire system—but you can protect your future and ensure you have access to your choice of quality care without placing a burden on those you love.

Don’t forget—long-term care may be needed for many reasons beyond dementia, including chronic illness, mobility issues, or simply the frailty that comes with aging.

Dementia doesn't wait. Neither should your plan.