Advance Directives and Dementia: Planning Ahead for Peace of Mind

There are two kinds of advance directive that are most often bundled together in a single document or form. The first, called a living will, is a set of instructions indicating what kinds of life saving and life- sustaining medical treatments a person would or would not accept if they were near the end of their life and unable to speak for themselves. Examples of the treatments typically covered by a living will are cardiopulmonary resuscitation (CPR), feeding and hydration through tubes, use of antibiotics, and breathing supported by a ventilator machine.

The second is a health care proxy, also called a durable power of attorney for health care or appointment of a health care representative. In this advance directive a person names someone else, typically a trusted family member or friend, to make medical treatment decisions on their behalf if they are unable to decide for themselves.

Creating an advance directive is an easy, popular way to plan ahead . . . to take into account a risk all of us face, the possibility that we might someday be unable to understand our medical situation and make our own care decisions. And because making a legally binding advance directive requires the same decision-making capacity as giving or refusing informed consent to treatment, the time for dealing with advance directives is before, not after, an accident or illness impairs a person’s cognitive abilities.

Continued Planning for Persons with Dementia 

An important point to remember about care planning and dementia, however, is that for many with dementia the capacity to understand and make informed choices diminishes over time, not all at once. Especially during the early stages of an illness, a person with dementia may still be able to have and communicate wishes regarding their care and wellbeing.

If you would like to learn more about a continuing role in care planning for yourself or a loved one with dementia, discussing options and resources with a care provider, geriatric care manager, or elder law attorney is a smart first step. In some states efforts are underway to develop planning documents specifically for persons with dementia. The purpose of such a form, called a Dementia Directive, is to supplement, not replace, a person’s regular advance directives. The goal is to create a structured opportunity for a dementia patient, working with family members, a health care representative, care professionals, and others, to address important questions such as:

• What are my goals and wishes for my care as my illness progresses?
• What lifestyle choices do I want made for me as my illness progresses?
• What cultural or religious considerations do I want taken into account in my care?

Successful ahead-of-time care planning rests on these important steps:

• Carefully considering your personal values, goals, and preferences as they relate to medical treatment and personal care options;
• Documenting your directions and appointing a health care representative using an advance directive form approved for where you live (because forms and witness requirements vary from state to state); and
• Talking about all of this with loved ones and, especially, the person you appoint to act on your behalf if needed, so they will have a clear understanding of your wishes and be able to support you confidently and knowledgably if the time ever comes when you need them in that role.