If estate planning isn't a grim enough subject, adding an advance directive for dementia to your plan is doubly unpleasant. But an hour or so of your time now could ensure your loved ones know how you would want to be cared for if you develop dementia or Alzheimer's.
As of 2022, almost 10% of U.S. adults aged 65 and over were found to have a form of dementia, reports Columbia University. And among people in their 90s, the rate of dementia rose to 35%. Symptoms like memory loss, personality changes, and in some cases, trouble speaking, make guiding your medical care after diagnosis especially challenging.
It’s for this reason that dementia considerations need to be made in the course of estate planning. And while a traditional advance directive might seem like the right approach, things could get more complicated when dementia is involved. That’s why a more specific advance directive may be the best course of action.
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An advance directive for dementia goes beyond a standard one
The purpose of an advance directive is to specify your wishes for medical care should you reach the point where you're unable to make such decisions yourself. With an advance directive, you may be able to spare your loved ones certain hard choices because your wishes will be spelled out in a legal document. (You may already have a "living will," which is a kind of advance directive that only specifies the level of medical care during end-of-life, not for management of long-term illness.)
The problem is that advance directives are generally enforced when someone is clearly incapable of making or communicating medical decisions, such as if they’re in a coma. Things get blurrier when dementia is involved, because the disease can have a slow and sometimes non-linear progression.
As Erica Ellis, JD, Product Counsel at Vanilla, explains, “Most traditional advance directives become effective when a person is deemed legally incapacitated. However, dementia and Alzheimer’s disease involve a prolonged, progressive cognitive decline, where the loss of decision-making ability happens gradually and inconsistently.”
This, she explains, makes it difficult to pinpoint when a standard advance directive should take effect.
Ellis’s concerns are echoed in a JAMA article by Dr. Barak Gaster, which states, "Standard advance directives are often not helpful for patients who develop dementia… Advance directives typically address scenarios such as an imminently terminal condition or a permanent coma, but they generally do not address the more common scenario of gradually progressive dementia.”
The importance of having a dementia-specific directive
A standard advance directive typically includes instructions on whether to use or discontinue life-saving treatments, such as artificial ventilation. But while that type of scenario might eventually apply to a dementia patient, it won’t necessarily apply at the onset of symptoms, or even as they progress.
It’s possible for dementia patients to enjoy a reasonably strong quality of life even when experiencing cognitive decline. A dementia-specific advance directive enables individuals to choose what they want their care to look like during various stages of the disease.
As Ellis explains, the value of dementia-specific directives lies in the fact that they address the specific realities of cognitive decline, allowing people to map out their healthcare preferences for each stage of the disease.
“Dementia-specific advance directives can provide greater clarity on when certain preferences should begin to apply based on recognizable stages of cognitive impairment,” she says. “Additionally, they can define the individual's personal thresholds for quality of life and ensure unnecessary or unwanted interventions are avoided if they contradict the person’s wishes.”
One important area to discuss, says Ellis, is nutrition and hydration preferences as dementia progresses to later stages. For example, if you reach the point where tube feeding and IV fluids are your only option for receiving nutrients, that's something you may not want. But your advance directive should get into the specifics of when you would or wouldn’t want such intervention.
How to get started (it's free)
There are several free tools available to dementia-proof your advance directive.
- Advance Directive for Dementia provides free information to those seeking advance directives for Alzheimer's or dementia. The site includes an advance directive for dementia template that you can download, fill out and give to your estate lawyer, family and doctors. Experts in neurology, geriatrics, internal medicine and palliative care developed the information as a public service. To understand how an advance directive for dementia can work with your existing estate planning documents, read the site's FAQ page.
- The National Institute on Aging offers a guide to planning after a dementia diagnosis, as well as a general guide on setting up an advance directive.
- Medicare Part B covers advance care planning as part of your annual wellness visit, so you can ask your doctor for help.
The key is to start early
While dementia is often a disease that progresses gradually over many years, sometimes, the progression can be more rapid. It’s important to put a dementia-specific advance directive in place before things get to that point. And if you have risk factors that increase your chances of a dementia diagnosis, it’s especially crucial to put a dementia-specific advance directive in place ahead of time.
The Alzheimer's Association also notes that having a parent or sibling with Alzheimer's and other dementias increases the likelihood of a diagnosis, especially when combined with modifiable risk factors like smoking, diabetes, and hypertension. You can work with a medical professional and an estate-planning attorney to determine the appropriate timing of creating your advance directive. But the key is to make sure you’re tackling this key task before cognitive decline sets in.
You may put an advance directive for dementia in place at any age, but experts recommend that everyone over 60 do so.
“The most important part of estate planning in the context of dementia is to start early, while the individual has decision-making capacity,” says Ellis. “Many states offer state-specific forms for advance directives, which can be expanded to include these specific types of instructions. Working with an attorney experienced in elder law and estate planning will help ensure that they understand the specific needs of the diagnosis and plan accordingly.”
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