DEMENTIA WISDOM: An Overview of Exciting Possibilities
Dementia is often defined as a tragedy filled with doom and gloom. Supposedly, about all anyone can do is hope for a cure, give a bit of comfort to the person with dementia, and provide some respite for caregivers.
“The dementia tragedy narrative is nonsense!” says a rapidly growing dementia care movement.
In Keep Sharp: Build a Better Brain at Any Age, neurosurgeon and CNN’s Chief Medical Correspondent Sanjay Gupta, MD says that the conversation about dementia is focusing more now on how we can “reshape the experience …showing those with dementia and their caregivers that it is possible to live well with the disease.” (p. 222, hard copy version)
Dr. Gupta reports that a bigger focus on early intervention and healthy lifestyle choices could delay or reduce the severity of dementia symptoms (p. 223). About a favorite resource for my husband John and me, Dementia Action Alliance (p.247), Dr. Gupta wrote, “Some community members feel that life is actually better after their diagnosis because it opens doors and creates new opportunities.”
That’s certainly been true for John and me. Starting 13 years ago when he was first diagnosed with Mild Cognitive Impairment (MCI) and several years ago with Dementia with Lewy Bodies, we’ve embraced many ways to live with more meaning, joy, and purpose even with his dementia. That’s why each year of our 40-year relationship is now richer than the one before, even when it’s tougher.
New creative and compassionate foundations for dementia care are game-changing. They begin with trading dementia shame or stigma for curiosity and questions that you can explore with allies around the world.
What if people living with dementia are respected as primary experts about what it means to live with dementia, what’s wrong with common dementia treatment, and how it could be better?
What if creativity, compassion, spiritual intelligence, and other elements of the word cloud graphic above represent proven avenues to transform serious dementia problems?
What if we act as if people with dementia still are filled with love and light, even when we don’t yet know how to connect with or support their gifts?
Numerous possibilities are proving to be highly beneficial for people who create and share best practices for handling the challenges of dementia.
I call this movement “dementia wisdom.” This is the simplest way I know to describe the diverse, brilliant work and hopes of myriad individuals and groups we’re blessed to know.
Dementia wisdom’s scope and meanings evolve through caring actions that are inspired by the civil rights, women’s rights, human potential, and other movements:
- Dare to go beyond the status quo to identify and handle your challenges and build your dreams.
- Research what others have discovered and create your own solutions and inspiration.
- Witness, encourage, and support others who care about your challenges and hold similar dreams.
- Watch the wisdom and joy grow as you repeat these steps.
The Dementia Wisdom graphic above shows many modalities, mindsets and actions that can help you develop and apply more wisdom to dementia care.
Mindfulness and other forms of meditation or contemplative practices, for example, help us recognize and clarify our thoughts without getting lost in them. In the process, stress and confusion can transform into peacefulness.
Mindfulness, according to the University of California at Berkeley’s Greater Good program, means “maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.”
Mindfulness helps us release assumptions and our culture’s obsession with hopes of a quick answer or fix to any challenge. That helps curiosity and creativity come alive. As you embrace the unknown in a mindful state, spiritual and emotional intelligence can then help you find deeper solutions to what you can change and make peace with what you can’t change.
Networking and research can help you find your best information, inspiration, allies, and emotional or financial support.
To give you an idea of benefits you can obtain by exploring tough challenges and creative options, here are a few of our results from networking, research, and engaging with others about our dementia joys and concerns.
- I’ve learned how to be a more relaxed, better care partner, in large part from listening to what people living with dementia say.
- We’ve told medical students during Dementia Action Alliance discussions led by Dr. Susan Weir what we want future doctors to know about our situation and needs.
- Re-Imagining Dementia: A Creative Coalition for Justice has helped us learn to laugh at our situation, share questions and insights with people from around the world, and bring enlivening play (especially improv) to some of our hardest days.
- Members of many groups have witnessed our pain, blessed our dreams and growth, and sat with us through heartbreak.
- We get trustworthy information and inspiration from peers that our neurologist doesn’t know or doesn’t have time to tell us.
- We share poetry and prayer that deepens our questions and guides our choices. We’re helped to stay present and fully engaged with the reality of the moment.
- Through Dementia Mentors, John meets twice a week with others who have his kind of dementia. Every Friday he meets with his personal mentor; every Monday there’s a meeting of mentors and their mentees. They’re his best possible tribe now, proving a common Dementia Action Alliance saying that the real experts in any kind of dementia are those who live with it.
- We thrive from engaging in activism and changemaking. What a joy it is to share such a big purpose with so many others who also care!
Want to tap more of your dementia wisdom?
Look at the list of elements in the word cloud graphic above.
Which elements are you already implementing?
Which are you drawn to investigate?
What other pathways would you add to this graphic?
Feel free to comment below. Note that all comments may be edited for clarity and brevity. Your name and contact information will not be published unless you give express permission.
We want you also to thrive while living with dementia.
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Surprising blessings of many kinds to you as you dare to dream and create a richer, more satisfying life, Pat Sullivan