Essential Documents for Medical Care and End-of-Life Decisions Should Include a Dementia Directive

As they age, it is important that federal employees and retirees plan their wishes for medical care and end-of-life decisions. Formal wishes are formally made through the writing of a living will, advance health care directive, and a durable power of attorney for health care. However, for individuals who have been diagnosed with dementia, a living will and an advance health directive may not be sufficient.

For that reason, a document called a dementia directive is becoming recommended among estate attorneys. The purpose of a dementia directive is to help individuals make decisions about their current and future care in the event they are diagnosed with dementia or there is a high likelihood they develop dementia in the future. According to a study published in the January 2025 issue of Nature Medicine, there is a 42 percent probability of the average American developing dementia after age 55.

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This column discusses dementia directives including what they are, their legality, and which individuals should consider obtaining one.

What Is a Dementia Directive?

A dementia directive is an informal document that spells out an individual’s wishes for care at different stages of dementia. The individual could have been diagnosed with dementia or there is a high likelihood the individual could be diagnosed in the future. The wishes for care include the types of medical intervention during the different stages of dementia including mild dementia, moderate dementia or severe dementia. For example, an individual may want to continue their daily medications at one state of dementia, while later when the individual is in the severe stage of dementia, the individual may want only what is needed to keep them comfortable and not prolong their life with medication.

There are different versions of dementia directives that are free online. These include one from Dartmouth College and another developed by Dr. Barak Gaster, a professor at the University of Washington School of Medicine. Individuals can choose whichever dementia directive version works best, given their wishes.

But whichever dementia directive version an individual chooses to use, additional instructions and preferences can later be added that are not already outlined in the directive. It is also important that individuals considering a dementia directive should first have a conversation with their family members, with their primary physicians, and perhaps with their clergy person. These conversations and discussions should focus on the individual’s wishes for care in the future, with all of the wishes put in writing.

Dementia Directives Are Not Legally Binding

It needs to be emphasized that a dementia directive is not a legal document. A dementia directive should be used alongside other legal documents including a living will and a standard advance health care directive. A dementia directive allows an individual to be more specific about their dementia-related care compared to a standard advance health care directive.

An estate attorney can use and incorporate specific language concerning dementia care into an advance health care directive. However, for many individuals, particularly those individuals who have a family history of dementia and Alzheimer’s disease in their families, a dementia directive included as an addendum to an advance health care directive may be the best and most cost-effective option.

It should also be emphasized that unlike other life-threatening diseases such as kidney disease or heart failure, a diagnosis of dementia can cause an individual to redirect their health care treatment years in advance of their death. It is not uncommon that an individual diagnosed with dementia can lose their decision-making ability one to three years before they die.

Who Are Candidates to Have a Dementia Directive?

It is especially advisable for individuals with a family history of dementia or who have been diagnosed with dementia to have a dementia directive. There is no harm for an individual to complete a dementia directive before reaching their senior years. For some individuals, a dementia directive should be written perhaps at the same time that the essential parts of an estate plan – a durable financial power of attorney, durable health care power of attorney, will or living trust, living will, advance health care directive and beneficiary forms are completed.

While some individuals may feel that a dementia directive via verbal instructions is sufficient, a verbal dementia directive is discouraged by most estate attorneys, especially for the primary caretaker’s peace of mind. From the primary caretaker’s peace of mind, it is important and comforting knowing that if the caretaker has to make a decision such as reducing or stopping medication, then there is formal reassurance (in the form of a written dementia directive) that this is what the patient wanted the primary caretaker to do in the best interest of the patient.