Rethinking Estate Planning: A Care-Based Approach for Families Living with Dementia
When a loved one begins to show signs of cognitive decline, life changes in quiet but profound ways. The routines that once felt simple now require planning. The choices that once seemed far off — about care, home, and money — start to feel urgent. Yet few families realize that the very systems meant to protect them were never designed for this kind of journey.
At Cleveland Elder Law, we see this as the gap between estate planning and care-based planning — and it’s often the difference between reacting in crisis and navigating the road ahead with clarity and dignity.
What families often need most in these moments isn’t just legal paperwork, it’s a plan that connects the financial, emotional, and practical sides of care. Care-based planning does exactly that. It acknowledges that life doesn’t pause for legal processes, and that thoughtful preparation can bring both peace and flexibility as care needs evolve.
Estate Planning Is About Control. Care-Based Planning Is About Continuity.
Traditional estate planning is built around control: controlling how assets are handled, who receives what, and how to minimize conflict and probate after death. It’s a way to bring order to uncertainty and ensure one’s intentions are honored.
But cognitive decline introduces a different kind of uncertainty — one that unfolds while life is still happening. It’s not a single moment, but a gradual transition marked by shifting capacities, growing care needs, and mounting costs. The questions families face become less about “what happens when I’m gone” and more about “how do we sustain quality of life while I’m still here?”
This is where traditional estate planning often falls short. The documents may be in place — a will, a trust, a power of attorney — yet they rarely account for the living, breathing complexities of progressive care. Who will manage the finances when decision-making fades? How will medical choices be made when needs evolve? How can a family preserve assets without delaying or compromising care?
Care-based planning bridges that gap. It connects the structure of legal planning with the realities of day-to-day caregiving. Instead of focusing only on transfer of wealth, it ensures continuity of life — aligning documents, assets, and care priorities so they move together as a person’s condition changes.
At its heart, care-based planning is not just about protecting what you’ve built, it’s about preserving how you live. It gives families the framework to manage care with confidence, adapt to change without crisis, and carry forward not only a legacy of assets, but a legacy of compassion and stability.
Why Families Delay Care — and How Planning Changes That
Many families hold off on care because love, fear, and hope are tangled together, making every decision feel uncertain.
They want to do the right thing. They want to protect the family home, preserve something for their children, and hold onto the belief that they can manage things just a little longer. But behind those good intentions often lies a deep misunderstanding of how the system works — and how much it can help when approached the right way.
We see this every week. Families doing their best to navigate care while avoiding financial collapse. They assume that asking for help too soon means losing everything they’ve built. They’re told by well-meaning friends that “Medicaid will take the house,” or that they have too much income to qualify.” Others are simply paralyzed by the paperwork, unsure where to start.
The result? Care gets delayed until a crisis hits. By the time they reach out, a loved one may already be in the hospital or a nursing facility, and decisions have to be made immediately. At that moment, options narrow. Costs rise. And what could have been a strategic process becomes a scramble to protect what remains.
The truth is, Medicaid can be used early on as a planning opportunity. When used intentionally, it’s one of the most effective tools for protecting assets and ensuring access to high-quality care. The key is to approach it proactively, not reactively.
Care-based planning reframes how families think about this process. It replaces fear with information, and crisis with strategy. Through early, thoughtful preparation, families discover:
You can preserve assets while becoming Medicaid eligible.
With the right structure, assets like the home, savings, and investments can often be protected through compliant strategies, even if care is already underway.You don’t have to spend down everything to qualify.
Ohio’s Medicaid rules are complex, but not absolute. A knowledgeable attorney can help distinguish between countable and exempt assets, ensuring you access benefits without unnecessary loss.Planning early protects both spouses’ quality of life.
Spousal impoverishment protections and trust strategies can secure care for one partner without jeopardizing the financial stability of the other.
Ultimately, care-based planning is about empowerment — removing the fear that seeking care means losing control. It reminds families that taking action early is an act of care, a way to protect dignity, choice, and connection through every stage of the journey.
The Hidden Gaps in Most Estate Plans
When dementia or another form of cognitive decline is diagnosed, it often exposes a reality families never saw coming: their “complete” estate plan wasn’t actually built to manage decline. That’s because most estate plans are designed to settle an estate, not to sustain a person’s care. They specify who gets what, but not who can make sure family members are cared for the way they want to be.
When decline sets in, what matters most is whether the family has the right documents in place to sustain care and protect the family.
Financial Power of Attorney (FPOA): The Most Critical, and Most Misunderstood, Document
In Ohio, the Financial Power of Attorney determines who can make financial and legal decisions when someone can’t. But the standard state form often lacks what are called “hot powers.”
Without those powers, even the most devoted family member may find their hands tied. They can’t apply for Medicaid on behalf of their loved one. They can’t create or modify a trust. They can’t transfer assets to preserve eligibility or protect a spouse.
What results is a heartbreaking paradox: families with a power of attorney still end up in court, seeking guardianship, because the document didn’t go far enough. Updating an FPOA before a crisis gives families the legal authority to act quickly, compassionately, and within the law — when time and clarity matter most.
Health Care Power of Attorney (HCPOA): The Foundation of Care-Based Decision-Making
Medical decisions are rarely black and white, especially in the context of dementia. A Health Care Power of Attorney designates who will make those decisions when a loved one can’t — but not all HCPOAs are created equal.
Without clear, specific language, even simple care choices — like whether to bring in home health care or move to assisted living — can become points of confusion or conflict. Families may find themselves at odds with healthcare providers, or even with one another, simply because the document didn’t anticipate the realities of long-term care. A strong HCPOA reflects the person’s values, preferences, and dignity.
Wills and Trusts: Preparing for the Living, Not Just the Leaving
A will distributes what’s left after someone passes away. But for families navigating dementia, the real challenge is managing life before that moment.
A revocable trust can simplify probate, but it won’t protect assets from long-term care costs or Medicaid estate recovery. An irrevocable trust, on the other hand, can safeguard key assets — like the family home — after the five-year look-back period, ensuring they’re preserved for loved ones rather than consumed by care costs.
These aren’t just financial tools, they’re instruments of continuity and peace of mind. The right trust structure ensures that care decisions don’t come at the expense of everything a family has built together.
A Shift in Perspective: From Asset Protection to Life Preservation
Estate planning traditionally centers on protection — protecting assets, a spouse, an inheritance. Those instincts are right. But when dementia enters the picture, the focus must evolve from protection to preservation of comfort, connection, and dignity.
It asks: How do we preserve comfort, connection, and dignity for as long as possible? How do we ensure that the resources we’ve built support the way we want to live, not just what we want to leave?
When values lead the plan, the paperwork starts to serve its true purpose: to make life work better, not just end neatly.
The New Role of Trusts in Care-Based Planning
In care-based planning, trusts are more than instruments of inheritance — they become tools of flexibility and protection during life.
Irrevocable Trusts can safeguard homes and savings from long-term care costs and estate recovery while allowing individuals to maintain control over how their assets are used.
Qualified Income Trusts (QITs) can help individuals with income above Medicaid’s limit qualify for benefits without depleting their savings.
Pooled or Special Purpose Trusts can help single individuals or those with complex care needs preserve assets while still accessing public benefits.
Each of these structures reinforces the same principle: thoughtful planning creates freedom. Families gain choices — about care settings, financial stability, and legacy — instead of being cornered by urgency or misinformation.
Beyond Legal Preparation: Building a Support System for the Journey
Care-based planning also recognizes that documents alone aren’t enough. Real stability comes from collaboration between attorneys, caregivers, medical professionals, and advocates.
At Cleveland Elder Law, we help families connect with:
Caregiver support networks to reduce emotional and physical strain.
Placement and in-home care partners to match quality care with realistic budgets.
Patient advocates and mental health professionals who support both the caregiver and the cared-for.
This approach ensures the plan works in real life, supporting the people behind the paperwork as much as the assets it protects.
From Fear to Confidence
When the focus shifts from “what we might lose” to “how we can live well,” the entire planning process changes. Families move from fear to confidence, from isolation to partnership.
That’s the heart of care-based planning: creating continuity of care, of values, and of peace no matter how unpredictable the path ahead may be.
Where to Begin
If someone you love has been diagnosed with cognitive decline or dementia, the most powerful thing you can do is start the conversation early. Care-based planning means creating it where it matters most: in how care is delivered, how assets are preserved, and how peace of mind is maintained through every stage.