Psychology Today recently published a column by Suzanne B. O’Brien, RN, an end-of-life doula with more than two decades of experience in hospice and end-of-life care. In “Two Questions We Must Ask About Dementia Right Now”, O’Brien argues that we must support today’s dementia caregivers while planning for our own future care. When she asks readers whether they have a dementia advance directive, she links to our free Dementia Values and Priorities Tool.
O’Brien writes that dementia caregiving can stretch across years and affect a caregiver’s health, finances, and relationships, yet one family member is too often expected to manage it all. She calls for caregiving to become a shared responsibility, with tangible help such as regular respite care, support groups, home-safety evaluations, and financial and legal guidance. She also urges friends and neighbors to offer specific help, like covering a set block of time each week or bringing dinner on a particular night.
O’Brien’s second question is harder but just as urgent: What would we want if we developed dementia? Most people, she notes, would not want to live for years without awareness or meaningful connection. Because planning requires the ability to understand and communicate your choices, it must happen early. Her recommended steps:
She frames this as practical, compassionate planning that respects each person’s informed choices about dignity and quality of life.
Our tool is a directive built around the symptoms and changes commonly seen in all types of dementia. It gives you a structured way to take the steps O’Brien describes.
You answer a series of questions about changes such as needing around-the-clock care, no longer recognizing loved ones, or being unable to bathe or move safely without help. For each one, you choose among three approaches to care: live as long as possible, treat me but not aggressively, or allow a natural death. When you finish, you have a document you can sign, add to your existing advance directive, and share with your surrogate decision maker and health care team.
The Dementia Values and Priorities Tool walks you through each decision and gives you a document ready to sign. Then share it with your surrogate decision maker, your health care team, and your family.
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