Key Takeaways
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Standard advance directives may not fully address the gradual cognitive decline experienced by Alzheimer’s patients, making dementia-specific directives essential.
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Dementia-specific directives allow individuals to express their medical care preferences at different stages of Alzheimer’s, supporting better decision-making for patients and caregivers.
Advance directives are a crucial part of estate planning. They guide medical decisions when someone becomes incapacitated and unable to communicate their wishes. However, they often fall short for patients with dementia who gradually lose decision-making capacity.
Alongside standard advance directives like a living will and a health care power of attorney, you may want to consider a dementia-specific directive. With over 7 million Americans living with Alzheimer’s, incorporating a dementia directive in an estate plan can improve care across the disease’s stages.
Alzheimer’s Growing Burden
Alzheimer’s disease is the most common form of dementia. It is a progressive neurodegenerative disorder that slowly destroys cognitive functions, leading to severe decline. This decline often comes with behavior and personality changes.
Prevalence and Projections
The Alzheimer’s Association 2025 Facts and Figures report estimates that over 7 million Americans aged 65 and older currently have Alzheimer’s. This number is expected to nearly double to 13 million by 2050. Approximately 1 in 9 seniors in this age group are affected. Women face a higher lifetime risk (1 in 5) compared to men (1 in 10).
Increasing Risk Factors
As Baby Boomers reach age 75 by 2040, Alzheimer’s diagnoses are expected to surge. Annual new cases could double from 514,000 in 2020 to 1 million by 2060. The risk of dementia increases significantly after age 75.
Several factors contribute to this trend: genetics, lifestyle habits, chronic health conditions like diabetes and high blood pressure, improved diagnostic tools, and greater public awareness.
Health Impact and Treatment
Alzheimer’s itself is not directly fatal. However, brain function decline causes complications such as dehydration, poor nutrition, and infections that can be life-threatening. Alzheimer’s-related deaths more than doubled between 2000 and 2022, making it the sixth-leading cause of death among seniors aged 65 and older.
While there is no cure to reverse or stop the disease, treatments including medications may help manage symptoms and slow progression.
Researchers now recognize the disease’s progression is more complex than previously thought. This complexity slows therapy development and increases the caregiving burden for families.
Late-Stage Care Needs
In the late stages, individuals with Alzheimer’s require 24-hour care. They need assistance with basic daily tasks such as hygiene, eating, and moving due to memory loss, confusion, and difficulties with language and coordination.
Economic and Societal Costs
The physical toll of Alzheimer’s reflects heavily on society and the economy. In 2025, health and long-term care costs for Alzheimer’s and other dementias are projected to reach $384 billion. Medicare and Medicaid cover 64% of these costs, while out-of-pocket expenses total $97 billion.
The total lifetime care costs for a person with Alzheimer’s or dementia exceed $400,000. Family caregivers bear 70% of these costs through unpaid care and personal expenses.
Nearly 12 million unpaid caregivers provide over 19 billion hours of Alzheimer’s care annually. This care is valued at $413 billion, often at a personal cost to caregivers’ health and finances.
Many caregivers feel unprepared to make medical decisions because their loved ones did not complete advance directives expressing treatment preferences.
A major review by UPenn researchers showed most Americans have not completed any advance directives. Less than 30% have a living will, and only one-third have appointed a medical power of attorney.
Even when advance directives exist, they often fail to address the unique needs of Alzheimer’s care.
Advance Directives and Alzheimer’s
After an Alzheimer’s diagnosis, people aged 65 and older live on average four to eight years, with some living up to 20 years. This slow, uncertain progression makes it crucial to have advance directives in place early—well before incapacity develops.
Advance directives specify medical care preferences and name a surrogate decision-maker, or health care proxy, who can act on the patient’s behalf. However, these directives usually focus on emergencies or end-of-life care and may not cover challenges unique to Alzheimer’s patients.
Dr. Barak Gaster created a dementia-specific advance directive to fill this gap. He notes that standard directives rarely address the slow progression typical of dementia.
“Advance directives typically address scenarios such as a terminal condition or a permanent coma, but they generally do not address the more common scenario of gradually progressive dementia,” he wrote in JAMA.
This gap causes problems. Patients may see cognitive decline as a loss of dignity and refuse life-extending treatments. Caregivers face anxiety trying to interpret unclear wishes.
Dr. Gaster collaborated with experts in geriatrics, neurology, and palliative care to develop a dementia-specific directive. This document describes dementia stages and allows patients to specify their care preferences for each.
“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster told the New York Times. “At what point, if ever, would they not want medical interventions to keep them alive longer? Many people have strong opinions, but it’s hard to express them as the disease progresses.”
How a Dementia Directive Works
A standard advance directive specifies medical actions for patients too ill or incapacitated to decide. It usually covers life-sustaining treatments like feeding tubes or artificial ventilation for terminal or vegetative patients.
Alzheimer’s patients’ preferences can change over time as their disease progresses through mild, moderate, and severe stages.
Early on, patients may still enjoy life despite some memory problems and difficulty with daily tasks. End-of-life decisions, such as “do not resuscitate,” usually apply only at the severe stage when patients become bedridden and unresponsive.
An Alzheimer’s or dementia-specific directive lets patients choose medical interventions tailored to each stage. It describes the stages and allows patients to indicate preferred treatments at each phase.
The Dementia Directive website recommends completing the directive before symptoms appear, as cognitive decline makes it hard to fill out later.
The directive is not legally binding but serves as a communication tool to guide medical decision-makers.
Note: advance directives are legally recognized but not always legally binding. Health care providers and proxies try to honor them, but some situations may prevent exact adherence.
It is vital to have open conversations with family about Alzheimer’s care preferences. This helps caregivers make informed decisions aligned with the patient’s wishes.
The Dementia Directive can be used alone or attached to an existing advance directive. Like other estate planning documents, it should be reviewed regularly and shared with trusted family and healthcare providers.
Download the dementia directive form and bring it to your next estate planning meeting to discuss aging, Alzheimer’s, and advance directives.
Additional Alzheimer’s and advance directive resources are available from the Alzheimer’s Association and The Conversation Project. State-specific advance directives can also be found online.