ADVANCE CARE PLANNING IN DEMENTIA RESOURCES
Dementia Directives are a supplement to your standard Advance Directive. They are designed to address the gradual loss of decision-making ability which typically occurs in dementia, and which may not be specifically addressed in a standard advance directive. It will be important to ensure that your preferences, as expressed in your standard advance directive, agree with those expressed in the Dementia Directive.
Dementia Directives are not legally binding. But they will help your loved ones understand what makes life worth living for you and what limits you would like to be honored in extending your biological life if you are unable to interact with others or live in a way that is acceptable to you. Knowing your values and wishes gives your loved ones peace of mind as they make treatment decisions on your behalf. Also consider a video or conversation with them.
Helpful Dementia Directive Resources:
- The Alzheimer’s Association End-of-Life Decisions Brochure contains excellent examples of questions to ask of providers when considering decisions near the end of life.
- The Conversation Project Starter Guide for Caregivers of People with Alzheimer’s or Other Forms of Dementia offers step-by-step guidance on how to prepare and have conversations about end of life wishes.
- Advanced Dementia: A Guide for Families is a comprehensive guide crafted from multiple Harvard resources.
Sample Dementia Directives:
- Advance Directive for Dementia offers a Dementia Directive Form by Dr. Gaster for documenting your wishes for mild, moderate, or advanced dementia.
- Compassion and Choices Dementia Values & Priorities Tool contains a fillable PDF designed to help you communicate your wishes regarding future care if you are living with dementia.
- End of Life Washington Alzheimer’s Disease/Dementia Mental Health Advance Directive is a form suggested by Washington State. It is 12 pages and instructions are also available.
- The Dartmouth Dementia Directive is a comprehensive advance care document for dementia care planning.
- Katy Butler’s Dementia Directive to her medical advocate offers a personal example.
Resources compiled by Jean Abbott, MD, MH and updated in May 2024