Charlie (center, front)We’ve all heard the numbers.
With the growing population of older adults in our communities, the incidence of Alzheimer’s Disease and other age-related dementias is on the rise. Every 68 seconds, an American is diagnosed with Alzheimer’s Disease. Over five million Americans live with the disease, and that number is predicted to triple by the year 2050.
Cue the ominous music.
We’re so used to being terrified when we hear these numbers. But could it be that the most fearful part is not the numbers, but the story we tell with them? The dementia story as we’ve been telling it until recently is a story of despair, shame, loss of ability, loss of meaning and loss of connection. It’s a story of wasting away, a story of devastating disconnect from identity and community. Yes, it’s a terrifying story.
However, there’s a new dementia story being told.
The last time I heard those statistics about the increase in Alzheimer’s Disease, a man living with early stage memory loss sitting beside me turned to his friend Charlie with the same diagnosis, reached out his hand for a high five, and exclaimed with a grin, “we’re on the rise!” This spirit of optimism, this spirit of embrace, characterizes the new dementia story. It’s a story of strength, courage, hope, purpose, joy, creativity and connection.
The new dementia story is being told around the world, it’s being told where I live in Seattle, and it’s being told by people living with dementia.
Worldwide, the public narrative around dementia has already begun to shift. Through dementia-friendly campaigns in nations like England and Australia, or cities like Bruges, Belgium or Twin Cities, Minnesota, awareness is building that people living with dementia are a vital part of communities, offer valuable gifts, and can continue to enjoy a full and meaningful life even with their diagnosis.
In Seattle, the new dementia story is being told by a variety of organizations and individuals that began working together in May to transform the city into the nation’s most dementia-friendly community. This group, the Alzheimer’s Services Coalition, includes representatives from senior-focused non-profits and businesses, healthcare, the arts, city government, foundations, the media, and community members. Mobilizing their diverse resources, skills and perspectives, they aim to exponentially multiply opportunities for people living with dementia to engage in community.
Coalition members celebrate the strengths of people living with dementia by offering a variety of dementia-friendly arts, fitness, volunteer and social programs such as watercolor painting experiences, hikes, improv theatre classes, food bank volunteer programs and Alzheimer’s Cafe events. In the spirit of John Zeisel’s “It Takes A Village” program, the activities happen in public venues, inviting people living with dementia to take full part in community, and utilizing public spaces to tell the new dementia story. As the Frye Art Museum hosts art gallery tours for people living with dementia, as Woodland Park Zoo becomes the site for a weekly memory loss walk, as more and more coffee shops offer monthly Alzheimer’s Cafe events, and these opportunities keep expanding, it’s impossible for Seattle to miss the story: there is life, full life, with dementia.
But beyond worldwide movements and local campaigns, the strongest voice of the new dementia story comes directly from people living with dementia. This voice can be heard as people living with dementia remain connected and engaged, and as they take a leadership role in building dementia-friendly communities.
CharlieTake Charlie, for example. Charlie lives with mild cognitive impairment, but his story doesn’t end there. He enjoys participating in various activities that keep him active and connected, including the Memory Loss Zoo Walk and the Alzheimer’s Cafes. He states, “the memory loss zoo walk gets us out into the fresh air so we can have fun and socialize. In addition, it makes us feel that we’re part of a supportive community.” For Charlie, living with memory loss means precisely that – living.
Along with staying engaged, Charlie leverages his strengths and perspectives to build a dementia-friendly Seattle. A former computer programmer, he invests time in the Alzheimer’s Services Coalition, co-designing an online calendar system that will help his peers to better access dementia-friendly opportunities throughout the city. Through his role on the Alzheimer’s Association Early Stage Memory Loss Advisory Council, Charlie assists with events like the annual Early Stage Memory Loss Forum. Charlie also advises the development of dementia-friendly enrichment programs as a member of Seattle Parks and Recreation’s Dementia-Friendly Recreation task force. Noting the unique satisfaction he derives from this work, Charlie states, “I’m also an activist in politics and in my neighborhood, but the things I do with and for people with dementia are different, because they give back to me more than I give.” When recognized for his many contributions, he states, “I wouldn’t be doing this if I didn’t know that I’m working alongside people who are absolutely determined to make something happen.” In these various roles, Charlie is working with his community to tell the new dementia story.
At Seattle’s Greenwood Senior Center, early stage memory loss program participants are defining the new dementia story with their own words and actions. In October, they chose to work on a project to reduce stigma related to Alzheimer’s Disease. Using drama, they explored their personal experience with stigma and the public’s false perceptions about dementia. Then they named truths about living with dementia that they’d like the world to know: “I’m still here.” “We’re fairly normal, whatever normal is.” “I’m still able.” “I’m not scary.” “I’m a person first.” “Having Alzheimers is an adventure not a disease.” Using these statements and photos of themselves doing activities they enjoy, they are creating and distributing a pamphlet that communicates their vision of the new dementia story and powerfully reclaims their voice, and their place, in community.
A statement from Jim, a participant in the Gathering Place.Every day, we can choose to continue telling the old dementia story, a story that condemns and terrifies, a story that adds burden to an already challenging journey. Or, we can choose to stop and listen. There’s a new dementia story being told. It’s a story not of despair, shame, loss and isolation, but a story of joy, strength, growth and connection. It’s a story being told by nations, by cities, and especially by people living with dementia. For the five million Americans living with Alzheimer’s Disease, the new dementia story unleashes a life not consumed by fear, but transformed by hope. Want to change the world? Start by changing the story. As we succeed in telling the new dementia story, we can all say, “We’re on the rise!”
Cannot agree more.
Most of the information we get about dementia is about decay, decline, despair, death and lots of other grim things not all beginning with the letter D.
How can we possibility be expecting people to “live well” with dementia and yet continue to ignore those who are seeking a new more hopeful narrative about dementia?
In the UK the media still routinely refer to dementia as “the living death” – and as recently as 2007 a large dementia charity launched Alzheimers Awareness Week with a celebrity quotation that included the words “dementia is more than a vile and vicious condition, it robs people of their soul and spirit like no other”
“Living Death” “No Soul” – what are talking about here? Unfortunately this kind of dehumanising language is very common and of course is hugely influential in informing our views of dementia – and of people with dementia.
It also informs our views of our future if and when we are diagnosed with dementia.
With these kind of messages – how can we even expect people with a diagnosis to get out of bed in the morning – let alone “live well”?
I read a great quote recently (I think it might have been Steve Sabat it said more of less:
“people with dementia are not the living dead – they are the living who deserve their place in the human world”
…….which is why it is really heartening to see that people with dementia themselves are getting involved in forging a new narrative.
I was honoured to be sitting with members of the Forget Me Not Group who are base in Swindon in the UK – as they won an award for Best New Media Representation of Older People at an awards ceremony in London last week.
The film is called “getting to know the person with dementia” and was made with the group (with a bit of support from me) for the Social Care Institute of Excellence – you can see it here http://www.scie.org.uk/socialcaretv/video-player.asp?v=gettingtoknowthepersonwithdementia
The organisation I work for – Innovations in Dementia is small Community Interest Company who work with people with dementia to test new ways of getting their voices heard.
We have a whole bunch of free resources around involving people with dementia, dementia friendly communities, and some great little films we made with people with dementia who all shared our belief that while a diagnosis of dementia might be life-changing, it need not be life-ending.
http://www.innovationsindementia.org.uk
Steve – thanks so much for your reply. I’m enjoying looking through your links and find them inspiring and useful to the work going on in Seattle right now. Much appreciated. Keep it up!
This is a wonderful piece, Marigrace. Thank you. I was a care partner for my mother for 8 years, and like to think that our story, as told in my book “Inside the Dementia Epidemic: A Daughter’s Memoir,” is hopeful, as I show how we actually grew closer over those years and learned to enjoy simple moments together right up to her last days. I think it’s important to share stories that counter the stereotypes and stigma of dementia. I have shared your post widely on FB and Twitter, and hope you write more.
Good to see this positive information. My mother and her sister both had Alzheimer’s. I am encouraged by new research that suggests that Alzheimer’s is a form of insulin resistance, or Type III Diabetes and that early Alzheimer’s can be slowed with a ketogenic diet. AND the importance of hydration and an healthy alkaline diet and water cannot be ignored.
Excellent post. Thank you.