Takeaways
- Standard advance directives may not adequately address the
gradual decline experienced by Alzheimer’s patients, necessitating
dementia-specific directives.
- Dementia-specific directives allow individuals to express
their wishes for medical interventions at different stages of the
disease, helping patients and caregivers in decision-making.
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.
In addition to standard advance directives, such as a living will and a health care power of attorney,
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.
Alzheimer’s Growing Burden
Alzheimer’s disease, the most common form of dementia,
is a progressive neurodegenerative disorder that slowly unravels the
mind and the self, leaving a patient in a state of severe cognitive
decline that may be accompanied by behavior and personality changes.
According to the Alzheimer’s Association’s 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.
About one in nine seniors in this age group are affected. Women face a
higher lifetime risk (one in 5) 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. The risk of developing dementia, including
Alzheimer's, increases substantially after the age of 75.
Genetic
and lifestyle factors, underlying health conditions (e.g., diabetes and
high blood pressure), advancements in diagnostic tools, and greater
public awareness have also led to earlier and more frequent Alzheimer’s
diagnoses.
Considered a fatal condition, the disease itself
doesn’t cause death, but the progressive decline in brain function leads
to complications like dehydration, poor nutrition, and infection 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
people age 65 and up.
While there’s no cure to reverse or stop
Alzheimer’s, treatments that that include medication can help manage
symptoms and potentially slow its progression.
However, researchers say
that understanding how it progresses is more complex than they
previously thought, which is hampering the development of effective
therapies and exacerbating the caregiving burden faced by family members
of Alzheimer’s patients.
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.
The physical toll of Alzheimer’s is
reflected in the societal and economic impacts of the disease. In 2025,
health and long-term care costs for Alzheimer’s and other dementias are projected to reach $384 billion, with Medicare and Medicaid covering 64 percent and out-of-pocket expenses totaling $97 billion.
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 in the forms of unpaid
caregiving and out-of-pocket expenses.
Unpaid caregivers —
nearly 12 million Americans — provide over 19 billion hours of
Alzheimer’s care annually, valued at $413 billion, often at the cost of
their own health and financial stability.
And in many cases,
caregivers are flying blind about the types of care that a loved one
with Alzheimer’s would like to receive, because that individual never
completed advance directives that express their health care decisions and treatment preferences if they become incapacitated.
The most systematic review of its kind, conducted by UPenn researchers,
found that most Americans had not completed any advance directive.
Fewer than 30 percent had a living will and just one-third had
designated a medical power of attorney.
But even if someone has
completed these documents, traditional advance directives may fall short
when it comes to Alzheimer’s disease.
Advance Directives and Alzheimer's
People age 65 and older survive an average of four to eight years
following an Alzheimer’s diagnosis, but some live as long as 20 years.
This shows the slow, uncertain progression of the disease — and the need
to have advance directives in place well before it reaches more
advanced stages and incapacity sets in.
Advance directives
outline the kinds of medical care a person would like to receive and
name a surrogate decision-maker (i.e., a health care proxy)
to act on their behalf if they become incapacitated and unable to state
their medical preferences. However, they’re typically used in an
emergency or for end-of-life care, situations that may not reflect the unique challenges and difficulties faced by Alzheimer’s patients.
Dr.
Barak Gaster, who came up with a new type of advance directive
specifically for people living with dementia, 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.
“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 a JAMA article.
This
shortcoming poses a problem for both patients and caregivers, Dr.
Gaster says. Many patients view living with advance cognitive decline as
“an unacceptable loss of meaning and dignity” and would not want
life-extending medical interventions, while health proxies “often
experience enormous anxiety trying to guess their loved one’s wishes.”
Working
with experts in geriatrics, neurology, and palliative care, Dr. Gaster
came up with a dementia-specific advance directive that 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.
“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? A lot of people have strong opinions about this,
but it’s hard to figure out how to let them express them as the disease
progresses.”
How a Dementia Directive Works
A standard advance directive specifies medical actions when a patient
is too ill or incapacitated to express them. For example, it usually
includes decisions about life-sustaining treatments like feeding tubes
or artificial ventilation for patients who are dying or in a vegetative
state.
While such scenarios might apply to an advanced Alzheimer’s
patient, a patient’s goals and preferences could change over time as
cognitive changes occur along the disease continuum.
During the
early stages, they might still enjoy life, despite some memory problems
or difficulties with daily tasks. It may only be toward the very end
that they are bedridden, unresponsive, dependent, and would want a “do
not resuscitate” directive.
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.
The Dementia Directive website
recommends that the directive be filled out before someone develops
symptoms of Alzheimer’s or dementia. Once signs of cognitive impairment
appear, it may be too difficult to complete the paperwork.
It
notes that the document is not legally binding but intended more as a
way “to record your wishes” and “help guide those who might need to make
medical decisions on your behalf.”
Many people do not understand this about advance directives: They are legally recognized, but not legally binding.
Health care providers and proxies do their best to respect advance
directives, but they cannot cover every situation. Circumstances may
arise in which a patient’s wishes are unclear or cannot be followed
exactly.
This is why it’s so important 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.
The Dementia Directive is
framed as 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. Like other advance directives and estate planning
documents, it should be regularly reviewed to reflect current
circumstances and your most up-to-date wishes. Share copies with your
closest family members and your provider(s).
Download the form
and bring it to your next meeting with an elder law attorney to discuss
questions you have about aging, Alzheimer’s, and advance directives.
Additional Alzheimer’s and advance directive resources can be found at the Alzheimer’s Association and The Conversation Project. You can also find state-specific advance directives online.
Full Article & Source:
Why Estate Plans Need Dementia-Specific Advance Directives
