Let’s Talk About Dementia
By Kim Callinan, Compassion & Choices President and CEO
September 22, 2020 dementia
My nana loved children. For years, she asked me to give her great-grandchildren. In 2000, the birth of my son granted her wish. Meeting him should have been a joyous moment for my nana and our family. Instead, she sat motionless, unable to move or speak, with no awareness of her surroundings or memory of us. Alzheimer’s disease had taken its toll on her mind and her body. After nine long years, she died having lost everything that mattered to her: her memory of her life and her loved ones, her identity as a person, even her ability to smile.
Today, as we recognize World Alzheimer’s Day, I’m sharing my personal story in honor of this year’s theme: Let’s Talk About Dementia. Like millions of other people plagued by dementia, my nana got trapped in the default mode of our medical system: life-extending treatments that often do little to increase quality of life and in some cases, diminish it.
Unless we take concerted steps to disrupt the status quo, more and more people will suffer from dementia for longer than they may want. At Compassion & Choices, we’ve designed two interactive, web-based tools that will help people take control of their care following diagnosis: the Dementia Decoder and the Dementia Values & Priorities Tool. Because we’re committed to helping people document their values and priorities while they are mentally capable so that their loved ones can navigate treatment and avoid prolonged suffering.
Dementia Values & Priorities Tool
The Dementia Values & Priorities Tool is an online resource that helps patients stay in control of their lives and care in the early stages of a dementia diagnosis. Patients will be able to provide a set of clear-cut care instructions to their loved ones, outlining their intentions through a personalized care plan called a Dementia Healthcare Directive. This convenient resource adds value-based instructions to a standard advance directive, and gives loved ones a way to implement critical, informed decisions on the patient’s behalf, free of guilt.
The Dementia Decoder, empowers a person living with dementia or a caregiver to indicate the current status of their dementia diagnosis, specify what they hope to learn and accomplish from an upcoming clinical appointment, and customize that experience using a list of helpful questions. These questions can then be printed or emailed to a provider or family member to guide important discussions during high-stakes medical appointments. Every journey is different. Your wishes for your life, from beginning to end, are yours to choose. And when you take the time to document and share your wishes, you add power to your choices.
Don’t hesitate: Start your planning today.