Advance directives are an estate planning must-have, helping to guide medical decisions for someone who becomes incapacitated and can no longer communicate their preferences. However, they may not be helpful for patients who develop dementia and gradually lose the ability to decide what medical care they want. Even if someone has completed these documents, traditional advance directives may fall short when it comes to Alzheimer’s disease. In addition to standard advance directives, such as a Florida Living Will Declaration and Designation of Health Care Surrogate, you might consider a dementia-specific directive for yourself or a loved one. With more than 7 million Americans living with Alzheimer’s, having a “dementia directive” as part of one’s estate plan can serve as a way to help improve their care at the different stages of disease progression.
According to the Alzheimers Association 2025 Facts and Figures Report, over 7 million Americans aged 65 and older are currently living with Alzheimer’s, a number projected to nearly double to 13 million by 2050. Women face a higher lifetime risk (one in five) than men (one in 10). With all Baby Boomers reaching at least 75 by 2040, the incidence of Alzheimer’s is expected to surge, doubling annual diagnoses from 514,000 in 2020 to 1 million by 2060.
In the late stages of the disease, individuals with Alzheimer’s typically require 24-hour care and assistance with activities of daily living — including basic personal hygiene, eating, and mobility — due to memory loss, confusion, and difficulties with language, problem solving, and physical coordination. Total lifetime care costs for a person living with Alzheimer’s or other dementias are estimated to be more than $400,000. Seventy percent of these costs are borne by family caregivers (unpaid caregivers) valued at $413 billion, often at the cost of their own health and financial stability.
Dr. Barak Gaster, working with experts in geriatrics, neurology and palliative care, came up with a new type of advance directive specifically for people living with dementia. He explains that, because the disease progresses slowly over many years, and the point at which a patient can no longer direct their own care isn’t obvious or predictable, standard advance directives don’t usually cover it. A dementia-specific advance directive carefully and clearly lays out the different stages of dementia and the potential effects on the patient. At each stage, the patient identifies in the document the types and levels of care they would be willing to accept, which is usually the subject of strong opinions by many. An Alzheimer’s or dementia-specific directive allows patients to choose among several options for three different disease stages — mild, moderate, and severe. It gives brief descriptions of the stages and under each stage it provides options where someone can indicate which medical interventions they’d want at that stage.
As an Expert in Florida Elder Law, Emma Hemness sees in her law practice how important it is to have conversations about Alzheimer’s with family members who might later be tasked with making medical decisions for you. “They need to understand, as clearly as possible, what your wishes would be and what types of treatment you would want to receive.” A “Dementia Directive” can be a “communication tool” that can be used as a stand-alone document or included as a supplement that’s attached to an advance directive form.
Ideally, everyone should be given the chance to fill out a Dementia Directive before they develop dementia. It is especially recommended after age 65. It can be difficult for someone to complete a Dementia Directive once they are already experiencing signs of cognitive impairment. Start planning now. Contact our law firm to receive your Free “Dementia Directive” form.
This blog references information posted in the ElderLawAnswers June 2025 newsletter.
