Dementia: learn about a living will extension, better communication and resources

Make your wishes known

Empath Choices for Care, one of the organizations that co-sponsored Kim Campbell's late-May visit to Empath Health in Clearwater, has launched something new to help people plan for their care should they develop dementia. It's a document that was designed to be an extension of a completed living will. "Living wills are great, but they only apply during a small window of time at the end of life, when there's little or no hope for recovery," said Tracy Christner, executive director of Empath Choices for Care. "When someone has dementia, there are many care decisions to make before the end of life. Dementia can last for many, many years. That's why it's important to document your wishes early, before the stress of managing a terminal illness affects you and your family."

Empath Choices for Care calls the document a dementia living will extension and describes it as a communication tool that will outline your wishes for care should you develop moderate or severe dementia and are unable to make health care decisions for yourself. Christner said it is a detailed document that deals with many complex, often difficult issues encountered in all phases of dementia. The language is direct so that your wishes will be clear. It covers such things as your choices for receiving food and fluids and how you would envision your quality of life in the event of a diagnosis of dementia. "We don't dance around the subject," she said. "You need to express these things openly and honestly and this document will help you do that."

Christner said the time to think about dementia care is before there's a crisis and the whole family descends with their own version of what Mom or Dad would have wanted. With a dementia living will extension a person's wishes are clearly stated so that the health care surrogate can honor those wishes instead of making uninformed decisions on their own. "It takes much of the decisionmaking, stress and anxiety out of dementia caregiving," she said.

To see the document and read more about how it works, go to empathchoicesforcare.org.

Caregiving tips

The Florida Gulf Coast Chapter of the Alzheimer's Association offers this advice to enhance communication with a person who has dementia:

• Always approach the person from the front.

• Identify yourself and address the person by name.

• Show that you are listening and trying to understand what is being said.

• Maintain eye contact.

• Encourage the person to continue to express thoughts even if he or she is having difficulty or you don't understand.

• Avoid criticizing, correcting and arguing.

• Be calm and supportive.

• Avoid using negative statements and quizzing (e.g., "You know who that is, don't you?").

• Use short, simple and familiar words.

• Avoid talking about the person as if he or she weren't there.

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Clinical trials, resources

People who have dementia can take advantage of available treatments and may be eligible for clinical trials. Visit trialmatch.alz.org to learn more about clinical trials.

Caregivers and their loved ones can benefit from local resources and support services such as education, support groups and referrals to community resources. For more information, visit alz.org or call the 24/7 Helpline toll-free at 1-800-272-3900.