Should You Consider Creating an Advance Directive for Dementia?

1280px-Refusal_of_treatment_formIf you were in a coma due to a terrible car accident, who would make medical decisions on your behalf? Would you want to receive all life-saving interventions possible or prefer only to receive treatments to ease pain and suffering? A common element of estate planning and long-term planning is the creation of an Advance Directive which lets you designate a person to make medical decisions on your behalf and specifies what type of medical care you would want to receive if you were ever incapacitated. A doctor in Washington believes that standard advance directives do not go far enough and has spent years creating an Advance Directive for Dementia. Is a dementia directive something you should consider for yourself and your loved ones?

The Benefits of an Advance Directive

An advance directive is a document that could prove critical if you should ever become incapacitated. In the event of an emergency, this document quickly lets medical professionals know who can speak on your behalf and make important medical decisions for you. It also gives you control over the care you receive even when you cannot speak for yourself. For example, some people may not wish to be kept on a ventilator if they should ever be in a vegetative state, while others would wish for all viable medical treatment possible.

Providing clear instructions on your care wishes gives your family crucial guidance and can help prevent uncertainty, fighting, or medical interventions that you may have never wanted.

Does an advance directive go far enough? Dr. Barak Gaster, an internist at the University of Washington School of Medicine thinks not. In a New York Times article, he suggests that a standard advance directive doesn’t take into account the complexities that come with a diagnosis of dementia and Alzheimer’s. In response, he created a dementia-specific advance directive.

Do Patients Need an Advance Directive for Dementia?

In the New York Times article, Dr. Gaster argues that an individual has roughly a 20 to 30 percent chance of developing dementia. This is much higher than the chance of slipping into a persistent vegetative state or permanent coma, which tends to be the focus of a typical advance directive.

Dr. Gaster points out that people with dementia and Alzheimer’s may live with the disease for many years and that their care preferences may change as they progress through the stages of the disease. For example, a patient in the first stage of Alzheimer’s may be able to maintain a high quality of life and prefer to receive medical treatment if faced with a medical emergency. That same person may wish for only pain and comfort management at the end of the disease when they have a diminished quality of life.

As Dr. Gaster’s directive points out, “as dementia gets worse, many medical tests and procedures become harder for people to go through, with more risk of side effectives and bad reactions.”

How Does a Dementia Directive Work?

Dr. Gaster’s advance directive for dementia is relatively simple. Patients can choose one of four medical intervention models for each stage of dementia. These four options are:

  • To live as long as possible – Includes all medical efforts to prolong life
  • Do not resuscitate – Receive all medical treatments except or resuscitation if you stop breathing or your heart stops beating
  • Care at home/facility – Rejects hospitalization and requests care only where you are living
  • Comfort care only – Requests only to receive care focused on relieving suffering and no medical intervention to extend life

By filling out the dementia directive, you could provide your family and chosen medical decision maker with a clear indication of your wishes specific to your stage of dementia. This can provide the same benefits of a standard advance directive, giving your family important guidance, as well as limiting uncertainty, fights, and medical interventions you would not have preferred. This can be very important, since you may not always be able to indicate your wishes or provide consistent preferences if you have dementia.

Download Your Advance Directive for Dementia

What to Do with Your Dementia Advance Directive

A dementia advance directive should not take the place of a standard advance directive or any other long-term care and estate planning documents. Instead, it should be included in your current estate planning as another tool for your family to use. We encourage you to fill out an advance directive as part of your long-term care and estate planning process. You can then make the decision about whether filling out an advance directive for dementia is also something you want to do.

If you do decide to fill out an advance directive for dementia, make sure to communicate this with your family. It is a good idea to email copies of the directive to your closest family members and especially the person you have designated as your medical decision maker. Give a copy to your primary care provider as well, so your doctor can include it with your medical records. If you are working with an estate planning attorney, consider sending a copy to your attorney as well.

Finally, make sure to keep a signed copy for yourself and to include it with a copy of all your estate planning documents, including your Power of Attorney, Healthcare Power of Attorney, and Will.

The decision to create an advance directive for dementia is a personal choice you must make for yourself. If you have a close family member with dementia or Alzheimer’s, this type of document may have an even greater meaning to you and your other family members.

Need to talk about Alzheimer’s and dementia? If you live in Poway or San Diego County, we invite you to our monthly caregiver support group. The group is open to all and free to attend. Let’s help each other face the challenge of Alzheimer’s and dementia.


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