As attorneys, we can’t prevent aging or disease. But we can help families build the infrastructure to respond when it comes.
In 2022, it was announced that Bruce Willis was retiring from acting due to cognitive health issues. It was later revealed that Willis had been diagnosed with frontotemporal dementia, also known as FTD, a form of dementia that occurs in people under age 60. According to The Association for Frontotemporal Degeneration individuals diagnosed with FTD on average are between 45 and 64 and it can take between 2 to over 20 years to progress. It can also take time to diagnosis FTD, it is often misdiagnosed and mistaken for other illnesses due to personality changes and appearing physically healthy.
To the public, the story felt like a shocking footnote to a storied Hollywood career. But for those of us working in estate planning, it was a painful reminder of what happens when dementia intersects with a lack of planning.
For the Willis family, this meant that the actor had to retire, his wife Emma Heming Willis, would now become his primary caretaker while caring for their children, and Willis would need round-the-clock care.
The real takeaway isn’t that this happened to a beloved celebrity—it’s that this can happen to anyone.
Why Legal Planning for Dementia Needs to Begin Early
Dementia doesn’t always arrive with fanfare. It’s subtle. Forgetting an appointment, misplacing medications, leaving dishes in the sink. But over time, those small lapses can turn into self-neglect, financial vulnerability, and health crises that no one sees coming until it’s too late.
That’s why we encourage clients to think of dementia planning not as a “what if,” but a “when.” We’re living longer than ever, and with longevity comes risk. According to the Alzheimer’s Association, one in three seniors passes away with Alzheimer’s or another form of dementia. The legal system has tools to help—such as guardianships, healthcare directives, surrogate decision-makers—but they work more efficiently (and are less costly) if addressed before capacity is lost.
Also, it’s important to remember that debilitating illnesses can strike at any age. It is important to have a plan in place so you and your loved ones are not caught off guard.
What Does a Dementia Care Plan Look Like
Having a comprehensive dementia care plan in place will provide you and your family with the legal and medical safety nets you need as you navigate this journey. This plan should include all estate planning documents and oversight protocols—such as routine wellness checks or third-party care monitoring.
1. Advance Healthcare Directives and Medical Proxies
An advance healthcare directive outlines a person’s wishes for medical care in the event they’re unable to make decisions for themselves. It can also include instructions for home safety checks or hiring outside care if certain conditions are met (e.g., “if I miss two appointments” or “if I go more than 48 hours without contact”).
A designated healthcare proxy or surrogate decision-maker holds the authority to carry out these instructions. This person can intervene early, schedule home visits, and make emergency medical decisions. Critically, they also gain access to HIPAA-protected medical information, allowing for more informed care decisions.
2. Guardianships and Conservatorships
These court-appointed roles are often the last line of defense when a person no longer has the capacity to manage their affairs. A guardian (or conservator, depending on the jurisdiction) can handle both financial and personal care decisions, including managing property maintenance, hiring caregivers, or arranging assisted living.
It’s important to note that guardianships are not quick solutions and are often a lengthy, expensive process. They require a court process and often arise only after a crisis has occurred. That’s why preemptive action—such as granting durable power of attorney and setting up successor agents—is frequently a better alternative.
3. Care Plans and Scheduled Wellness Checks
In estate planning, we often talk about care planning in abstract terms. But in practice, it can be incredibly concrete. A care plan can include everything from nutritional requirements to daily routines, to who stops by the house and when.
Wellness checks—either by law enforcement, medical professionals, or trusted family—are crucial when a person begins to withdraw or shows signs of self-neglect. These can be written into a care directive or set up as part of a long-term care agreement. When cognitive decline limits someone’s ability to recognize that something is wrong, the legal system must empower others to act.
The Danger of Isolation—and Why It’s Legal, Too
For people who do not have a spouse, family, or close friend to care for them what is the risk?
Social isolation among older adults has reached epidemic levels. According to the U.S. Surgeon General, more than one in three adults over 45 reports feeling lonely. For individuals with dementia, this isolation compounds exponentially, increasing the risk of missed diagnoses, injuries, and fatal infections.
Yet isolation is not just a medical issue—it’s a legal one. Without proper documentation and proactive legal engagement, even the best-intentioned neighbors or relatives may not have the authority to intervene. HIPAA protections, property rights, and privacy laws all serve valuable purposes—but without balance, they can leave vulnerable individuals legally unreachable until it’s too late.
What Families Can Do Now
As attorneys, we can’t prevent aging or disease. But we can help families build the infrastructure to respond when it comes. Here’s what I recommend every family consider if a loved one is aging or showing signs of memory loss:
- Draft or review your advance directive and make sure it includes both medical wishes and care expectations.
- Appoint a healthcare proxy and financial power of attorney—and not just one, but a backup as well.
- Document a care plan that includes practical check-ins: Who is visiting? How often? What should trigger intervention?
- Consider a guardianship petition if a loved one is clearly declining and refusing help.
- Have the hard conversations now. Waiting until “it gets worse” is a dangerous gamble.
A Final Thought: Planning Is an Act of Dignity
There’s a temptation, even among professionals, to treat estate planning as a transaction. Documents get signed, binders get stored, and life continues. But dementia planning is more than paperwork—it’s a process of protecting autonomy, preserving dignity, and ensuring no one dies in silence or squalor.
The rapid cognitive decline of Bruce Willis and the unexpected weight of becoming a caregiver while raising young children for Emma Heming Willis is not just a Hollywood tragedy. This is a wake-up call for families across the country. If it can happen to them—wealthy, well-known, and surrounded by professionals—it can happen to anyone.
Let this moment be the push you need to take action. Because the true crisis is not dementia itself—it’s what happens when no one is expecting it.
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