Long-Term Care Deep Dive — Part 1: The Risk Most Families Don’t Plan For (Until They Have To)
Long-term care is one of those topics that feels “far off” — until it suddenly isn’t. A fall, a stroke, a diagnosis of dementia, or simply a gradual decline can change daily life quickly. And when that happens, the decisions aren’t just medical. They affect the healthy spouse, adult children, work schedules, living arrangements, and the family’s financial plan in very real ways.
This is Part 1 of a three-part series designed to bring clarity to long-term care (LTC): what it is, who is most likely to need it, and why the family impact matters as much as the price tag.
What Long-Term Care Actually Is (And What It Isn’t)
The National Institute on Aging defines long-term care as a variety of services that meet a person’s health or personal care needs when they can no longer perform everyday activities on their own. It often starts with help at home — bathing, dressing, eating, taking medications, and supervision for safety — and can expand to community programs, assisted living, memory care, or nursing home care depending on need.
A key misconception is that long-term care is primarily “medical care.” The Administration for Community Living (ACL) emphasizes that most LTC is assistance with daily life, often called Activities of Daily Living (ADLs) — like bathing, dressing, toileting, transferring, continence, and eating.
That distinction matters because it drives how care is delivered — and how it is (or is not) covered by insurance.
Who Needs Long-Term Care?
The short answer: more people than most expect, and often for longer than they imagined.
ACL estimates that about 60% of us will need assistance at some point with tasks like getting dressed, driving to appointments, or making meals.
Research that focuses on more severe needs shows a similar story. The Urban Institute’s Richard W. Johnson found that 70% of adults who survive to age 65 develop severe long-term services and supports (LTSS) needs before they die, and 48% receive some paid care over their lifetime. Most won’t need paid care for many years, but a meaningful minority will: only 24% receive more than two years of paid LTSS and 15% spend more than two years in a nursing home.
The Center for Retirement Research (Boston College) breaks this down in a way families tend to understand: roughly one-fifth of 65-year-olds will never require LTC, while about one-quarter will have severe needs. The remainder fall into minimal or moderate needs — which still can require real support from family and/or paid caregivers.
The takeaway isn’t “everyone ends up in a nursing home.” It’s that functional decline is common, and families need a plan for what support looks like if and when the need arises.
What It Looks Like for a Spouse: The “One-Legger” Problem
One of the most practical frameworks I’ve seen comes from the Michael Kitces conversation with Thomas West, who describes “one-legger” couples — where one spouse is relatively healthy and the other is not. In these households, if something happens to the healthier spouse, both spouses can become vulnerable quickly. And many of the biggest decisions about care are made with family members in the moment, often without a clear plan.
This is why long-term care planning isn’t only about “my” risk. It’s about the system around you:
- Who would step in first?
- What happens if the primary caregiver (often the spouse) can’t do it?
- How do we protect the healthy spouse’s ability to live and function — emotionally, physically, and financially?
Even when love and commitment are strong, caregiving can become a second full-time job.
The Caregiver’s Health Is Part of the Plan
Caregiving is often portrayed as a family duty (and it can be deeply meaningful), but it’s also a public health issue.
CDC data shows caregivers have worse outcomes across many health indicators compared to non-caregivers. In 2021–2022, caregivers were unfavorable on 13 of 19 measured health indicators, and the prevalence of lifetime diagnosed depression was higher among caregivers (25.6%) than non-caregivers (18.6%).
That matters because caregiving plans often assume the spouse (or an adult daughter) can “just handle it.” In reality, caregiver burnout can become its own crisis — especially when the care recipient has cognitive decline, which research consistently finds to be more taxing on caregivers than many other conditions.
A good LTC plan protects the person receiving care and the person giving it.
A Quick Reality Check on Costs (Because They Drive Decisions)
When families are forced to decide quickly, cost becomes the “silent driver” behind almost every choice: how much care can we afford at home? when do we need outside help? and when does a facility become necessary?
The CRR summary cites current national estimates of approximately $108,000 per year for nursing home care and $61,000 per year for home health care.
Those are averages — and averages hide the real risk: a smaller percentage of households experience very large costs for a long period of time.
Why This Conversation Matters Now
Long-term care planning is rarely about predicting exactly what will happen. It is about acknowledging that some level of support is likely — and that the impact extends beyond the individual receiving care.
The data tells us that functional decline is common. Severe needs affect a meaningful minority of households. Caregiving carries real emotional and physical costs. For married couples in particular, the risk is not simply “Will I need care?” but “What happens to us if one of us does?”
And yet, these conversations are often postponed because they feel uncomfortable.
Sometimes the only way to stop postponing important decisions is to begin the dialogue — even when we’d rather not. If your health changed suddenly, who would make decisions for you? What kind of care would you want? Would you prefer to remain at home, move to a community setting, or use some form of hybrid support — and why?
Have you talked openly with your spouse or children about caregiving responsibilities? If you are still working, have you considered how those responsibilities might affect your time, energy, or employer expectations? What did the Covid years teach you about vulnerability, access to care, or the consequences of being unprepared?
For business owners and leaders, this conversation extends beyond personal planning. Asking employees how caregiving responsibilities — for children or aging parents — affect their work can open the door to support and sustainability before burnout sets in.
When families avoid this conversation, decisions tend to be made under stress — after a fall, after a diagnosis, or during a hospital discharge planning meeting. At that point, options narrow and costs often rise.
Good planning does not eliminate risk. But it creates clarity — about preferences, roles, responsibilities, and financial boundaries — while choices are still wide open.
Coming Next
Part 2: How Long-Term Care Gets Paid For (And Why Medicare Isn’t the Answer). We’ll walk through the major payers — Medicare, Medicaid, private coverage, and out-of-pocket — and clarify what each actually covers (and what they don’t). We’ll also review key eligibility rules and why Medicaid planning often becomes part of the conversation for families who never expected it.
Part 3: Long-Term Care Insurance and Smart Planning for Couples. In the final installment, we’ll examine traditional LTC insurance, hybrid life/LTC policies, and when self-funding may be appropriate. We’ll also discuss practical planning steps couples can take now — including stress-testing income, protecting the healthy spouse, and building flexibility into the overall retirement and estate plan.
