Dementia. Latin for “without mind.” In a world defined by the phrase, “I think, therefore I am,” there is nothing more terrifying. And dementia is on the rise. But in the midst of the fear, in the midst of the anxiety, in the midst of the despair, something else is brewing. It is brewing and it is overflowing and it is unstoppable. It is telling the new dementia story. It is momentia.
What is momentia?
Momentia is a joyful proclamation. Momentia declares the new dementia story, a story not of fear, isolation, despair, futility and loss, but a story of hope, connection, growth, purpose and courage. Momentia affirms a story told by the lips and lives of people living with dementia, a story of living fully and boldly in the moment. In words, it’s told by Roger as he states, “I’m not scared anymore; I look for opportunities to engage.” It’s told by members of Seattle’s Greenwood Senior Center early stage memory loss program, as they assert: “I’m still here.” “I’m still able.” “I’m a person first.” In lives, the story is told as a man savors the familiar thrill of reeling in a wild salmon, his eyes twinkling and his face lit with a broad grin. It’s told as a woman carefully appraises the brilliant color of a fall leaf on the table in front of her, dips her brush into the thick red paint, and spreads a bold streak across her paper. It’s told as a man strums his guitar at a local cafe, his fingers finding their joyful way, his wife singing along as they lead others living with dementia in a rousing rendition of “You Are My Sunshine.” Momentia exclaims, “there is hope!” And not just hope in a future cure, but hope in this moment.
Dementia is not contagious. Momentia is.
Momentia is an irrepressible community transformation. Around the world, a movement is rising. It is a movement that publicly demonstrates the new dementia story through the exponential growth of opportunities for people living with dementia to engage in community. As people living with dementia increasingly take the lead, as more and more cities and nations declare themselves “dementia-capable,” as expanding numbers of theaters, bookstores, parks, museums, community centers and coffee shops offer innovative dementia-friendly experiences like theater improv, watercolor painting, snowshoe hikes, poetry readings, Alzheimer’s Cafes and art gallery tours, the new dementia story is being told in a powerful public voice that captivates, inspires and ignites. This is momentia – a worldwide phenomenon – pulsing with life, spreading like fire. It’s a movement – momentum – forward motion. Dementia is not contagious. Momentia is.
Momentia is an exhilarating invitation. There’s a new dementia story being told, and we can all be a part of it. The old dementia story mocked and exhausted us: “Why bother? You can’t make a difference anyway. Dementia is a hopeless situation.” In response, the new dementia story laughs brightly, undaunted, and invites us with a refreshing voice: “Come! You can make a difference, with delight and with ease. Your particular gifts can be of use in countless ways.” Working together with people living with dementia, and carried along by the joy of the movement, we can ask ourselves: what small part of the new dementia story most enlivens us? What part are we bursting to tell? This is the energizing invitation of momentia.
Can we listen carefully to the new dementia story as told by the words and lives of people living with dementia, and begin to share it? Can we share it intentionally and exuberantly with friends, family, neighbors and co-workers as a way to overcome the fear and shame of the old dementia story?
Can we invite people living with dementia to take a leadership role in our organizations, congregations or neighborhoods, or if we live with dementia, can we offer our stories, skills and perspectives on behalf of the movement for dementia-friendly communities?
Can we write a poem, compose a song, or produce a film celebrating the strengths of people living with dementia?
Can we use our research background to study the positive effects of nonpharmacological approaches to dementia, such as creative arts and community engagement?
Can we publicly display art, theater, writing or music produced by people living with dementia?
Can we reach out to a neighbor living with dementia, discern what brings him or her joy in the moment, and do it together?
Can we contribute financially to a local art museum or theater and ask them to develop an arts engagement program designed for people living with dementia?
Can we volunteer at a program like this?
Can we contact our celebrity or politician of choice and ask him or her to advocate for dementia-friendly communities?
Can we help our local coffee shop start an Alzheimer’s Cafe?
Can we, in invigorating ways like these, and numerous ways yet to be discovered, join in the movement to redefine what it means to live with dementia in our communities? We can – with delight, and with ease.
This, together, is momentia. A new story told most compellingly and vividly by people living with dementia. A community transformation unfolding as the new story surges onward, leaving its tangible and joyful mark in our museums, parks, community centers, art galleries, stadiums and coffee shops. An irresistible invitation for us all to play a part in abundantly life-giving ways.
And through it all, we use the word to celebrate. The old dementia story has come to an end. The new dementia story is emerging. Momentia! Try saying it. It must, in fact, be exclaimed. The word springs from the lips, proclaiming, transforming, inviting. Momentia! There’s a new dementia story being told. It’s a hopeful story, it’s a triumphant story, and we’re all a part of it. Momentia! We’re not afraid anymore. We are celebrating. Because as dementia is on the rise, so is momentia!
There’s a new dementia story being told, and we’re all a part of it! We’d love to hear from you:
How is the new dementia story being told by people living with dementia in your community?
Where is the Momentia movement already emerging where you live, or what dementia-friendly community transformations would you love to see?
How are you already involved in redefining what it means to live with dementia in your community, or what small and delightful part would you love to play?
ChangingAging will be following the Momentia story worldwide as the movement unfolds. Share your stories by commenting below, submitting guest blog posts. Please visit Momentia Seattle on Facebook and subscribe to our Momentia mailing list for the latest news and updates on the new dementia story: Momentia!
I am Hannah, an Aging 320 student at the Erikson School of Aging. I agree with the content of the post. I like the notion of momentia. Dementia is an understandable depressing condition to have because it begins to deteriorate the brain and memory. Memory is a huge part of what makes a person who they are. The culmination of experiences together causes a person to truly be who they are. I like that this allows individuals with dementia to take complete charge of their illness. This empowers dementia patients to live a full life instead of the typical notion of living a dreary, depressed life.
My position relates to the concepts studied in class. Using the health behavior theory, individuals are coming in terms with their disease. They are taking charge and choosing to live fully and freely in the healthiest way that they can despite their condition.
I especially like the notion of Alzheimer’s cafe. This is a hub for people with Alzheimer’s to come together and freely live within a artistic and respectful place. This correlates with the Social Theory Model since individuals will learn to be comfortable and brave enough to know that they have the power to manage their illness and be apart of a community. This allows individuals with Alzheimer’s to be social beings instead of the stereotypical isolated beings.
This is a beautiful article!
Thank you for sharing about this wonderful movement and for the work you are doing in Seattle. It’s exciting to see the positive direction society’s view on dementia is heading. I’m in the process of opening a farm where persons with dementia can live a life with purpose and meaning. One of the goals of the farm is community involvement allowing them to interact and see dementia in a different way and more importantly to see the individuals who live there as the wonderful people they are!
Fabulous Emily our charity is raising money at the moment with a similar aim. Good luck with the farm and let us know how it goes.
Emily – can you please contact me – I’d love to hear more about your process! We had a ‘dementia-friendly’ volunteer program on an urban farm in Seattle this past year which was a beautiful experience. Please contact me at: [email protected]. Thanks! -Mari
Hi
We are working with young people with a dementia in West Sussex, England. We have just set up Sporting Moments at our local sports/leisure centreso that couples can attend together and enjoy different activities such as curling, badminton, table tennis, archery etc. We have tremendous fun and people can sit and chat with each other or join in. The young men with dementia are extremely competitive especially on the table tennis table.
As a charity, Know Dementia, we hope to set up other Sporting Moments in different areas keeping us all young and healthy.
Hello I am an AGNG 200 student at the Erickson School of Aging. I love this article and agree 100% of what was said. During aging it is normal for older adults to start to forget things, like where they left their car keys or what time a certain television show starts. Dementia on the other hand is different and is a serious condition that usually always results in negative things. Adults start to forget how to do things that have been habits to them when they were younger, like eating, driving a car, taking a shower, etc. When people have dementia it is a sad time in their life and it almost seems helpless and hopeless, but its not! With the movement of Momentia, it could reverse the negative effects that dementia creates. It gives hope to those suffering with dementia and it gives them that sense that their life isn’t over. There should be more organizations to expand this movement everywhere! Momentia gives people a chance to still enjoy their life and to help if not improve people with their horrible condition. Momentia brings out the positivity in something that is always looked at as a negative thing. This will encourage people to not be afraid anymore and fight through dementia and continue to live a happy life. It helps them realize that they still matter and that they still have a role and a purpose in this world. It also lets them know that there are people who care for them and want to see them live happy. I love this movement and hope that it will succeed, which it will! Everyone needs to know about this and spread it quick. Dementia is not contagious, Momentia is!
Hello AGNG 200 student at the Erickson School of Aging. I think in the past dementia was seen as the diagnosis of doom and where people suffering and family members lost hope and only saw a future with negative outcomes. I feel that in general looking towards the future with hope and an attitude of optimism is the best way to approach any type of sickness and disease. Dementia has the potential to be a scary time in someones life but can be met with support and understanding instead. I think what you are writing about is important and inspiring. Dementia affects real people with feelings and a desire to continue on in their lives to the fullest extent. By offering and encouraging ways to still stay active and enjoy life, this acts as a support system that can help during the rough days as well as the better ones. Just because someone suffers from memory loss, that doesn’t mean they should stop doing the things they love or explore new interests for fear of having bad days. Like you said “i’m still here”, “i’m still able”, that matters, people matter no matter their life stage or mental cognition people still have a voice and a right to live life amongst supporters and loved ones.
I am an activities director, I work with population. While it makes my heart heavy,people do not see them this way already. I’ve started a program in the assisted facility I work at; it allows a memory care resident to teach a class to fellow residents in our assisted living. Some have utilized past careers or simply a hobby. It truly has empowered my residents,given them meaning and a sense of purpose. It allows staff and other peers a chance to see the person and not the disease. This is beautiful to see this awareness !
This blog post should be required reading for all those Health Ministers and Alzheimer’s Association folks meeting at the G8 Dementia Summit! Thank you.
Through the To Whom I May Concern® online video project, we have produced two videos of scripted readings by people with dementia. The performers also contributed much to the script, having met with Maureen Matthews, the director, for interviews and story-telling for several weeks. The people in these videos tell a positive story as well; they do however point out the negative, largely caused by stigma. Please take a look! The links are: Our Side of the Fence: http://minds-meeting.com/recordings-slides-from-previous-webinars/our-side-of-the-fence/ AND The Real World of Alzheimer’s: http://realworldofalzheimers.com/
I cannot express how much I love this post! It reminds me of a very encouraging and hopeful book that I just recently read on aging and dementia… “Rich in Years” by Johann Christoph Arnold http://www.richinyears.com. The book gives hope to the caregivers and people going through struggles with dementia. Thank you for posting!
That sounds like a lovely book, Becky. Thank you!
You are welcome Cassandra! I hope you get a chance to check it out!
Love it – great post, great concept!!
Excellent! I will share this widely.
–author, “Inside the Dementia Epidemic: A Daughter’s Memoir”