Early planning is crucial when it involves the care of a person with Alzheimer’s disease and other dementia-related illnesses. The most important reason to plan early is simple: a person must have legal capacity to sign any official document. This enables them to have input on important decisions regarding their life. When legal documents are completed later in the progression of dementia, their validity may be questioned or even challenged in court — a process that can be expensive, emotionally draining and create painful divisions within families.
Dementia progresses differently for every individual, making it difficult to predict how quickly abilities will change or what types of care will eventually be needed. What is certain, however, is that care needs increase over time and often rise beyond what families can realistically manage at home. Early planning helps ensure that the person’s wishes are honored and gives caregivers the time and clarity needed to prepare for long-term care options before decisions become urgent.
Because the issues involve the care of a person as well as their property, it’s important to consult an elder law attorney. They can help navigate these complex decisions and give current advice. Legislation regarding these matters changes almost yearly.
A good elder law attorney will help assess your family’s medical needs and align your finances with a long-term care strategy. This planning includes preparing legal documents, such as powers of attorney, wills and trusts. An early assessment of your family’s situation can make a significant difference in the ability to obtain quality care and, more importantly, in making informed choices about how and where that care is delivered.
The National Elder Law Foundation (NELF) is the only national organization accredited by the American Bar Association to certify practitioners in elder and special-needs law. NELF’s Certified Elder Law Attorney (CELA) designation confirms a lawyer’s exceptional expertise in this specialized field. To find recommendations, visit www.nelf.org.
If you cannot afford an eldercare lawyer, you can access free legal aid through LawHelp.org, an online directory that lists local legal aid programs in every state and U.S. territory; Legal Services Corporation (lsc.gov); USA.gov (usa.gov/legal-aid); the American Bar Association through ABA Free Legal Answers (abafreelegalanswers.org), a virtual clinic where qualifying low-income individuals can post civil legal questions; and the National Legal Aid & Defender Association (nlada.org).
The Legal Documents That Safeguard Decision-Making
Everyone, especially when cognitive health may be a concern, should have a basic set of essential legal documents in place. Two of the most important are a power of attorney (POA) and a health care proxy (also called a medical power of attorney).
These documents are often more important than a will in the early stages because they apply while you are still living. Known as advance directives, they allow you to designate a trusted person to make financial or medical decisions on your behalf if you are unable to do so yourself. Having these safeguards in place protects your autonomy, reduces stress for loved ones and ensures your wishes are honored when it matters most. The will states how a person’s property and assets should be distributed after death.
The Durable Power of Attorney (POA)
This is the most critical document for planning for incapacity. It is where we appoint a trusted person (friend, family member or lawyer) to handle our financial affairs on our behalf. Only a durable POA stays in effect after the principal has become mentally incapacitated. A nondurable POA is used in specific, short-term tasks, such as appointing an agent to close on a house for you in another state, but it ends on the completion of the task or if you become mentally or physically incapacitated. The POA does not cover medical decisions.
Health Care Proxy
Medical decisions are covered in a health care proxy. This document appoints a trusted person to make medical decisions for you when you can no longer make them for yourself. This could be about surgery, medications, life-sustaining treatments or anything health-related.
Living Will
A living will is a document detailing specific preferences for end-of-life medical care and treatments (e.g., life support such as feeding tubes, ventilators or resuscitation; organ and brain donation*). Due to the progressive nature of dementia, early planning is crucial. This will reduce the burden on family members who might otherwise struggle to make these decisions in line with your wishes.
A single donated brain can support hundreds of research studies that will contribute to helping advance scientific understanding of Alzheimer’s and other dementia-related illnesses. It can also confirm a diagnosis. Among the many places to donate are Alzheimer’s Disease Research Centers, congressionally designated centers of excellence that support the nation’s increased effort to address Alzheimer’s. You can find centers in your state, and information about donation, at Alzheimers.gov/taking-action/national-research-centers.
A Will
A will spells out what you want to do with your money, property and other assets after death, and appoints an executor to manage your estate. You can give assets outright or put them in a trust for a particular person.
Guardianship & Conservatorship
Guardianships (or conservatorships) are court-appointed arrangements for people who can no longer manage their own finances or medical decisions due to incapacity, such as Alzheimer’s. They’re necessary when someone hasn’t completed planning documents — like a durable power of attorney or health care proxy — that would otherwise authorize someone they trust to act for them.
A guardianship can be initiated by a family member, friend, hospital or nursing home. After a hearing, a judge decides whether the person is incapacitated and then appoints a guardian, who may or may not be someone the person knows, to make decisions on their behalf. Guardianships aren’t inherently negative. They are critical safety nets when no planning has been done. But they often lack the most important perspective: the wishes of the person whose life will be affected.
