Takeaways
- Actor Bruce Willis’ diagnosis of aphasia and frontotemporal dementia (FTD) highlights the importance of incapacity planning.
- Incapacity planning involves creating legal documents to manage financial and medical affairs if one becomes unable to make decisions.
- Financial documents include a durable financial power of attorney and a revocable living trust. Medical documents include a living will, health care power of attorney, do-not-resuscitate (DNR) orders, and HIPAA release.
- Planning for incapacity can ease the burden on loved ones while ensuring that one’s wishes are honored.
In 2022, the world learned that legendary actor Bruce Willis – known for his memorable starring roles in Die Hard films, the cult classic Pulp Fiction, the Golden Globe-winning TV series Moonlighting, and much more – had been diagnosed with aphasia, a condition that affects speech and language abilities. In 2023, his family provided a further update: Willis’ condition had progressed to frontotemporal dementia (FTD), a degenerative brain disorder that impairs cognitive function, behavior, and communication.
The news of Willis’ FTD diagnosis was heartbreaking for his fans, but it also served as an important reminder: Incapacity can strike anyone at any time. Preparing for it is an act of respect and compassion for one’s family.
Understanding Aphasia and Frontotemporal Dementia
Aphasia is a neurological condition that affects a person’s ability to speak, understand language, read, and write. It often results from brain damage, such as a stroke. However, in Willis’ case, it was an early sign of frontotemporal dementia.
FTD is a rare type of dementia that primarily affects the frontal and temporal lobes of the brain, leading to changes in personality, decision-making, speech, and motor skills. Unlike Alzheimer’s disease, which primarily affects memory, FTD can cause individuals to lose the ability to communicate and make sound judgments. For people with FTD, there is currently no cure, and its progression can be unpredictable, varying from person to person.
The Importance of Incapacity Planning
Bruce Willis’ diagnosis highlights the importance of planning for the possibility of incapacity. No one expects to lose the ability to make their own decisions, but conditions like dementia, strokes, or traumatic brain injuries can strip people of that ability — sometimes earlier in life than expected.
Incapacity planning is an important part of the estate planning process. It involves preparing legal and financial documents that help ensure a person’s wishes are honored if they are no longer able to make decisions for themselves. Starting the advance care planning process may seem challenging at first, but it can make things easier for you in the long run and is one of the most compassionate things a person can do for their family.
Incapacity planning involves legal instruments that can be grouped into two general categories: financial and medical.
Financial Documents
Two financial instruments you should consider creating are a durable financial power of attorney and a revocable living trust.
- Durable Financial Power of Attorney (POA). This standard estate planning document allows a trusted individual to manage financial and legal affairs if the person loses capacity, whether as a result of illness, injury, or aging.
- Revocable Living Trust. A revocable living trust can help manage a person’s assets without the need for court intervention, such as guardianship or conservatorship.
Medical Documents
Advance health care directives, also known as advance directives or health care directives, are legal documents that outline a person’s medical preferences if they become unable to communicate or make decisions for themselves.
These documents ensure that health care providers and loved ones understand a person’s wishes regarding medical treatment. This can reduce confusion and stress during critical moments and remove the burden of indecision and blame from the family members who want the best for their incapacitated loved one but may have conflicting views on proper medical or end-of-life care.
Advance directives that will help loved ones in the event of incapacity include:
- Living Will. This document helps prevent unwanted or unnecessary medical interventions by specifying which medical treatments a person wants – or does not want – in case they become terminally ill or permanently unconscious.
- Health Care Power of Attorney. This document, which is sometimes referred to as a health care proxy, designates a trusted person to make medical decisions on behalf of an incapacitated individual. This differs from a living will because it allows the proxy to make decisions in unforeseen situations, not just those covered in a living will. Choosing a proxy who understands your values and medical preferences will help ensure your health care wishes are adhered to.
- Do Not Resuscitate (DNR) and Do Not Intubate (DNI) Orders. A DNR order tells medical staff not to perform CPR if a person’s heart stops beating, and a DNI order instructs doctors not to use a ventilator (breathing machine) if a person stops breathing. These forms must be completed with a doctor and are typically placed in medical records or displayed at home for emergency responders.
- HIPAA Release. Though this simple document is not considered an advance directive, it is helpful to fill out. It ensures that designated individuals, such as family members, have access to their loved one’s medical information when needed.
A Lesson in Preparedness and Love
Though Bruce Willis’ family has not publicly discussed his incapacity planning, their unified approach to his care suggests that they may have taken proactive steps. His wife, children, and ex-wife, Demi Moore, have rallied around him, ensuring that he receives the best possible care while also raising awareness about FTD.
Willis’ diagnosis serves as a poignant reminder that incapacity can affect anyone — regardless of age, wealth, or status. By making legal and medical arrangements in advance, individuals can protect their dignity and ease the burden on their loved ones.
Plan for Incapacity With an Estate Planning Attorney
Though having conversations about incapacity may be difficult, it can help provide peace of mind and allow families to focus on what truly matters — supporting and cherishing their loved ones. After talking with your family members about your medical and financial wishes, find an experienced estate planning attorney in your area to help you create an estate plan that makes your incapacity planning official.
For additional reading about estate and incapacity planning, check out the following articles:
- What Does Incapacitated Mean in Elder Law and Estate Planning?
- Planning for Cognitive Impairment and Preventing Elder Abuse
- Decisions to Make for Your Power of Attorney
- The Benefits of Revocable Living Trusts
- Parkinson’s Disease in Older Adults: What You Need to Know
- Make Sure Your Beneficiary Designations Match Your Estate Plan
