Caring for Dementia: Advance Care Planning
Advance care planning is the process of making choices about your own future medical care. During advance care planning, you create what’s known as an advance directive or a living will. An advance directive is a legal form that states a person’s preferences about his or her future medical and mental health care. This lets you give someone the power to make health care decisions for you if you can’t make them. This is important for a person with dementia. It may be hard to make health care choices as dementia symptoms get worse. If you become too ill to make decisions about your care, an advance directive can help your doctors and family members understand what you want.
Why it’s important to create an advance directive
As dementia gets worse, you will be less able to speak for yourself. You will be less able to understand things, make choices, and sign papers. An advance directive helps make sure that your medical care will match your values and goals. It will help family members make tough choices in a crisis.
Every person has the right to create an advance directive. You also have the right to accept or refuse any medical treatment by saying so in the document.
What is in an advance directive?
Advance directives are made up of one or more legal documents. Some of the documents vary by state. They may include a health care agent form, living will, durable medical power of attorney, or others. The U.S. Department of Veterans Affairs (VA) has forms you can fill out.
VA forms may differ from state-approved forms. You can also get the forms from your local hospital or agency on aging. Your state department of health or senior services may have forms. You can also hire a lawyer.
An advance directive includes:
The name of a health care agent. A health care agent is a trusted person who speaks for someone who is not able to make medical decisions. It’s an official duty that’s noted by a legal document. The name of this role varies by state. It may be called a Durable Medical Power of Attorney or Durable Power of Attorney for Health Care. It may be called an agent, surrogate, or advocate. Or it may be called a representative or decision maker
Information about care to receive or refuse. A person with dementia will need to think about what kind of medical care he or she will want in the future. When would you want to refuse or stop treatment? This may include if you can't interact with people, are in a lot of pain, or need a machine to stay alive.Many advance directive forms pose questions that can help you make choices.
An advance directive may also include:
A Do-Not-Resuscitate (DNR) order that states that you do not want to be revived once your heart or breathing stops
Instructions about organ donation
Information about burial or memorial wishes
Picking a healthcare agent
You will need to choose a trusted person to be the healthcare agent. An agent doesn’t make decisions based on his or her own opinions. Instead, an agent will make sure your wishes are carried out. Many people pick a trusted family member or friend. Some people pick a spiritual advisor such as a priest or rabbi. It is important to talk with the person you’d like to serve as your healthcare agent about this important role.
What to do with your advance directive documents
When you’ve completed all the documents to be part of the advance directive, you will need to sign them. Some may need to be notarized. This means they need to be signed in front of a notary public. You will need to have an ID, such as a driver’s license or passport, to show the notary. Be sure to give signed and notarized copies to people who need them. This may include your healthcare agent, family members, and healthcare providers. You may want to give a copy to your lawyer. Make sure to put a signed and notarized copy in a safe place, such as a safe deposit box. You should also give the VA a copy for your health record.
Learning more and getting help
There are many places to learn more about how to plan for your advance care. Ask a legal advisor or your health care team for resources. If you need more information or help filling out the forms, you can ask to speak with the social worker on your health care team.