In Seattle, community members living with memory loss are rising up as the true spokespeople, and the true experts, on what it means to live with dementia!
Last fall, a group of participants in a local early stage memory loss program decided they had had enough of being overlooked, misunderstood, and considered “less-than” by wider society. Embarking on a bold mission to transform the public perception of dementia, they chose to do so in a personal and courageous way – sharing their own stories. Participants crafted statements communicating what they’d like the world to know about living with memory loss: “I’m still here. I’m still able. I have a lot to give.” Perhaps most radical: “Having Alzheimer’s is an adventure, not a disease.”
Pairing these statements with their own photos, they designed a flyer called “Faces of Memory Loss” and began distributing it throughout the community, and presenting it in venues such as Alzheimer’s Cafe events. Recently, their courageous and provocative message caught the attention of the local NPR station: (Listen Here).
At a recent gathering, the group performed a little rap to sum up their purpose.
There’s a new dementia story taking hold
It’s not that old story of shame and fear
It’s people with dementia shouting: “I’m still here!”
That last line got cheers and applause.
What began as a small project with grand hopes, has become a powerful story spreading throughout Seattle and beyond. This is the new dementia story, a story which can transform our communities into places of inclusion, understanding and connection, a story told most authentically by people living with dementia. This is momentia.
Laura Henze Russell says
Most chronic diseases are the result of unfortunate combinations of gene types and toxins that trigger inflammation, which fuels a raft of chronic cognitive, immune, neurological and psychiatric diseases.
It is worth reading up on this. There is new science and clinical experience that shows it is possible to slow and perhaps arrest this process. There is promise for progress on prevention and more effective intervention.
Important avenues of research are to look for defects in methylation and detoxification pathways, an then remediate them through specially targeted forms of folate, B12, etc to compensate for the defects. That’s the nature side.
On the nurture and exposure side, overlooked inflammatory triggers include hidden dental infections that present as tenderness and TMJ. They also include metallotoxins like mercury off-gassing from dental amalgam fillings, which are especially damaging for those with genetic susceptibilities. They include chemtoxins, biotoxins like Lyme, and mycotoxins ( molds) for which there are also genetic susceptibilities.
Larger institutions like the Alzheimers Association move more slowly in recognizing and integrating cutting edge work, and are not yet on board with personalized genetic and toxicological approaches to Alzheimer’s. Biotech leaders increasingly see the world this way, and are looking to develop blockbuster patentable drugs.
In the meantime, the best approach may be to work with people who understand the new scientific and clinical approaches. For diagnosis and treatment options, one can consult with functional/integrative MDs and biologic dentists, who are ahead of the curve in these areas.
In addition to easing the stigma of this disease, let’s advance how we approach it to benefit patients. Put people and health first.
AGNG 200 Student at the Erickson School of Aging says
This topic hits pretty close to home, my fiance’s grandpa has Alzheimer’s and is steadily declining. When my fiance and I started dating he had just been diagnosed, so he has never remembered me, but I’ve slowly seen him forget everyone around him even his wife of 55 years. He was still very mobile and functioning until January nothing but declining health since. Grandpa in the beginning was still very much himself according to my fiance and his family, his personality and cracking jokes was still occurring. It has been hardest to grandma to see her husband slowly hurting and more so forgetting that he is even married to her. He still looks at her like she is the answer to his prayers and tells all of us that one day he is going to marry her. I think the best thing about this article is that just because someone is diagnosed with Alzheimer’s they are not instantly mush and knocking on death’s door. These people still an live and enjoy life. Grandpa is declining more and more with his health but he still enjoys laughing and exploring. He tries to have a good day everyday.
Jake Dibattista says
Agng 200 student Erickson school of aging
This post was a very eye opening to an issue that often gets little coverage. Seattle and the state of Washington have a reputation of being forward thinking, and this is certainly a new hot button issue I can get behind. People in loving enviorments can thrive with the condition. My favorite part about this post was the part about community. I think success in any field requires community. Community makes us happy, and guides us, helps us stay strong. These are all things any person can get behind, especially one suffering from alzheimers. Having patients and non patients with the disease come together is a great course of action combating the disease.
AGNG 200 Student at the Erickson School of Aging says
This subject is very close to my heart. My grandfather has dementia. He doesn’t know who I or many of my family members are anymore but he is still very active, has almost no health problems aside from the dementia and is interested in the world. I think its hard for the loved ones of people with Alzheimer’s and dementia to seemingly loose the personality and character of someone they’ve known their entire life. I think its their reaction to these illnesses that have helped perpetuate the image of people with Alzheimer’s and dementia having one foot out the door. I’ve personally found it rewarding to learn about this new person he has become. As we’ve learned in class its probably because he has been very health conscious in his old age that he is still so active. Overall he still seems very happy and that’s what is most important
AGNG 200 student at the Erickson School of Aging says
Great post! I’m very delighted to see how people with Alzheimer’s are viewing the disease in a positive way. I agree with how society view people with Alzheimer’s and think so negatively about how those people are “less than” everyone else in society. Us as a society need to also view Alzheimer’s as an adventure, not just a degenerative disease. In my class, Ive learned that if people don’t give little to no attention to their health when younger, then they’ll suffer the major consequences. Especially with diseases like Alzheimer’s, it’s better to be treated in the earlier stages in the disease than to leave it untreated until the late stages.
AGNG 200 student says
I am an AGNG 200 student at the Erickson School of Aging. It is such a great post to read! I love how positively the members and this community handle with memory loss. Most of people easily think that Alzheimer is a terrible memory-loss disease which ruins lives because mass medias such as medical and mainstream scientific communities have put bad ideas about Alzheimer’s into our heads to get their own benefits. However, fear and stress about Alzheimer only can aggravate people’s illnesses. As I learned in my class, if people give a little of attention to their health as getting older such as getting regular check-up and seeing a doctor, there is nothing to worry about. Understanding that memory loss is one of processes of aging most people have and trying to have positive thoughts about aging will promote people to live much healthier life than when people worry and have fear about memory-loss diseases.
AGNG student at the Erickson school of Aging says
This post is very good and is changing aging because many are ignorant when it comes to differentiating Alzheimer and diseases, many believe it is disease and intend to treat an Alzheimer patients like they are no bodies, this is relate to what i have learned in class that Alzheimer can’t not be avoided or cure, it being describe as an “adventure” is the best description so far i have come across.
Wonderful to hear and I agree! My mother said such wonderful, funny, insightful, and astonishingly poetic things that I taped many of our conversations, something I recommend. Now I have a magical repository of her voice, talking and singing. How lucky am I? If anyone is interested I am giving away the PDF of this wee book of conversations – hopeful and honouring.
Amy Goyer says
Love this effort – and even in later stages, the people we love are still here. This isn’t just true for early stage. The essence of who we are – the soul – it’s still there even when Alzheimer’s blurs the edges of who we are.