Dementia Directives: Making Your Voice Heard When You Can No Longer Remember

Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year. At that rate, in 2050, it is estimated that the number of people living with dementia will increase to more than 130 million. Alzheimer’s disease is the most common form of dementia and is the estimated cause of 60–70% of dementia cases. Although dementia mainly affects older people, it is NOT a normal part of aging.

Since dementia is a degenerative disease that is associated with a decline in memory, family members and clinicians are often unsure whether the care they provide for such patients is the care that patients would have chosen. Across the care spectrum, whether in nursing homes, hospital wards, intensive care units, and outpatient clinics, family members and clinicians commonly encounter this dilemma due to the nature of the disease.

Advance Care Planning in Northern Virginia

Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know—both your family and your healthcare providers—about your preferences. These preferences are often put into an Advance Medical Directive (formerly called a Living Will), a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury—no matter how old you are. It helps others know what type of medical care you want under different scenarios and situations.

An Advance Medical Directive also allows you to express your values and desires related to long-term care (using the Farr Law Firm’s proprietary Long-term Care Directive™) and end-of-life care. You should think of your Advance Medical Directive as a living document—one that you can adjust as your situation changes because of new information or a change in your health.

Dementia Directives

Most Advance Medical Directives are not very helpful for patients who develop dementia. Advance Medical Directives typically address scenarios that are imminent, such as terminal conditions, being comatose, being incapacitated due to a car accident, etc., but they generally do not address gradual and progressive illnesses, such as dementia. The Farr Law Firm’s proprietary Long-term Care Directive™ does address the care needs associated with gradual and progressive illnesses because these illnesses typically require the need for long-term care.

Without a legal document to use as a roadmap, clinicians unsure of the goals of care for such patients may continue to provide the same care they would have in the absence of dementia, without addressing whether plans should be adjusted. Clinicians and family members often find it easier to continue current treatment paths rather than really knowing whether such care is what a person with dementia would have wanted.

What if a Dementia Patient Doesn’t Want Life-Saving Measures?

Medical decisions for patients with dementia are typically made by health care agents (or proxies) because patients with dementia eventually lose decision-making capacity. These agents (who were likely named as an agent in an Advance Medical Directive before the person had dementia) often experience enormous anxiety trying to guess their loved ones’ wishes. A Dementia Directive, which is a dementia-specific Advance Medical Directive, lessens this burden by providing some clarity about patients’ values and goals that can then help support decision making when a patient can no longer make decisions for themselves due to memory loss.

Many patients with dementia, or with a history of dementia in their family, would welcome having an opportunity to provide guidance about their care should dementia occur. Now, at the Farr Law Firm, our proprietary 4-Needs Advance Medical Directive™ now includes a Dementia Directive as part of our Long-term Care Directive™ that provides a way to do so while you are still of sound mind, whether or not you ever develop dementia.

Living Will for Dementia

Our dementia-specific 4-Needs Advance Medical Directive™ addresses the changes in cognition that occur as dementia progresses, as well as the changes in goals of care that patients might want along the continuum of the disease. For instance, to address changes in the disease, the dementia directive lists:

• cognitive milestones of dementia grouped into 4 stages;
• developments that typically occur at each stage;
• determining whether the person with dementia would want full efforts to prolong his or her life, treatments to prolong life, care where he or she is living, or comfort-oriented (non-life prolonging) care only;
• deciding whether to use feeding tubes in late-stage dementia.

Advance Medical Directives in Northern Virginia

An increasing number of people have views about the care they would want if dementia were to occur, and every effort should be made to honor those wishes. The best way to do so is to complete a dementia directive such as our 4-Needs Advance Medical Directive™ before you develop signs of dementia. This is because even with early cognitive impairment, patients may lose the ability to complete complex planning about future medical decisions.

If you or any of your loved ones have not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), the end of the year beginning of next year is a good time to plan and get prepared. Call us to make an appointment for an initial consultation:

Estate Planning Attorney Fairfax: 703-691-1888
Estate Planning Attorney Fredericksburg: 540-479-143
Estate Planning Attorney Rockville: 301-519-8041
Estate Planning Attorney Washington, DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.