What causes the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support and services. It’s a Catch 22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.
On January 25 PBS will air Alzheimer’s: Every Minute Counts, a documentary framed as “an urgent wake-up call about the national public health threat posed by Alzheimer’s disease.” The film starts with phoned in quotes about the tragedy of Alzheimer’s from the perspective of care partners overlaid with dramatic images and music and then goes to experts with catastrophizing predictions such as, “It is going to sink the health care economy and in turn sink the national economy” and “It will take us down, this disease will take us down.”
The film details only one side of the story when it comes to Alzheimer’s. The result highlights just how hard care partnering can be without giving voice to people living with dementia or how society causes much of this suffering. The film uses scare tactics in the name of safety without respecting the dignity of taking risks which those of us without a diagnosis take for granted every day. The film speaks about mounting medical costs with no mention of innovation or social capital. It warns us of the hardships of people living with dementia in isolation without highlighting communities who are banding together and helping each other live well regardless of cognitive ability. The film pathologizes “wandering” without asking how people are getting creative to protect the freedom to go where one chooses. The film interviews only one person living with dementia and the interview takes place immediately following her being given the diagnosis. The single ray of hope and possibility for living well comes at the end of the film when a family care partner is supported by hospice and remarks, “I have always been against any kind of help because I thought I would have to put her in a home or something, and I was totally wrong.” The film concludes with a plug for medical research funding as the only possible thing one can do about this so-called crisis.
“How depressing! Where is the hope and encouragement for those who are being diagnosed now?” Larry Klika, a retired pharmacist in Missoula, Mont., diagnosed with Alzheimer’s disease in 2015, said after watching an advanced screening of the film provided by ChangingAging.org with his wife Linda.
There’s nothing new about this film’s focus on the tragedy-only narrative of dementia, designed to catch media attention, social and otherwise, by stoking and feeding on our deepest fears about aging. We are calling on the ChangingAging community to take a stand and show the world that there is more to the story. Let’s enact one of the most important words in our language: ‘and.’
Yes, medical research is important AND so are ways to make our communities and ourselves more dementia inclusive. Yes, there is suffering associated with Alzheimer’s AND much of this suffering is socially imposed by the tragedy-only narrative and can be alleviated through perspective shifts. If you watch this film on January 25, please do so with the word ‘and’ at the top of your mind. Where does ‘and’ need to be added? Where is only part of the story being told? Where is suffering being added rather than alleviated?
PBS and underwriters for this documentary, such as the Alzheimer’s Association, have mounted major publicity and social media initiatives around this program. Together, we can be sure that the voices of people living with dementia and their allies are also heard!
For inspiration we reached out to some of our favorite experts (those living with dementia) and allies, and here is what they have to say:
Nowhere in this documentary does it mention the positive effects of exercise, socialization or a healthy diet. These have all been shown to slow down the progression of Alzheimers and in some cases prevent the symptoms from ever occurring (i.e. The Nun Study). We are talking about people here not just dollar signs. We deserve to live the best life we can for as long as we can! We need to encourage Dementia Friendly Attitudes in our Communities to help this become a reality.
— Larry and Linda Klika, founders of Living Well With Dementia in Missoula, Mont. (Larry asked we also tell readers he loves running, enjoys being with his grandchildren and, as Forest Gump would say, “That’s all I have to say about that.”)
There are almost 50 million people currently diagnosed wth dementia globally, and this is possibly a gross underestimate if we factored in that in the USA, only 50% pf people get a diagnosis, and in countries such as India, less than 10%. Of course, as a person diagnosed with a dementia, also representing the global organisation Dementia Alliance International, I would like a cure, but let’s get real. We want better health care, better support for ourselves and our families, and a focus to be on our human right not only to a diagnosis, but to rehabilitation and disability support to enable independence for longer. This film simply highlights the negative and disempowering discourse of tragedy, told from the perspective of family carers, even though people with dementia have been advocating there must always be “Nothing about us, without us.” It continues to support the many myths including we are all end stage in our dementia, people with dementia cannot, and do not live good lives with dementia, and that we are unable to contribute in meaningful ways to our communities. It is wrong to continue to highlight the losses, in order to elicit money, for research or running advocacy organisations, especially when 67 years after the UN Declaration on Human Rights was signed, the OECD concluded in 2015 “Dementia receives the worst care in the developed world.
Tragedy sells but there is a market for hope too.
In an ageist society, worse than old is very old, and worst of all is very old and incurably ill. Add to that the tremendous stigma that accompanies mental impairment of any sort. It’s a quadruple whammy if you take into consideration the fact that family members often feel stigmatized by association. Fear-mongering of this type only deepens the stigma—and the burden on everyone involved. People with dementia are not as “lost” to an incurable disease—and therefore lost to us—but still present in various ways, with ongoing human needs for affection, connection, and expression. Let’s tell that story too.
Alzheimer’s, like any aspect of illness or wellness, is part of the human experience. It brings many life challenges, but also opportunities. Many advocates living with the diagnosis around the world are showing us how it is possible to live well with dementia. People living with Alzheimer’s are writing books, giving testimony at the UN and WHO, volunteering in their communities, creating art, or engaging with preschoolers in intergenerational programs.
There are two serious consequences that spring from the discourse expressed in this documentary: One is that such a stigmatizing portrayal of people with dementia leads us to disempower and marginalize them, causing excess disability and actually increasing the burdens on families and care systems, financial and otherwise. The second is that an inordinate focus on cure suggests that your only path to a life worth living lies in us being able to make you more like the rest of us. This creates an underlying message that difference and disability are not to be valued or tolerated, and that creates a dangerous world, into which we will all grow old.
I live in a community in Seattle that welcomes people living with dementia and provides an incredible abundance of creative and fun opportunities to engage and contribute to the community. We can pursue both medical research on dementia AND community development in support of living well with dementia. But we can’t pursue one at the expense of the other. The stigma and fear created by the tragedy-only narrative are real and contribute to isolation and make it that much harder to support people living with dementia. We can help alleviate the stigma and fear by taking a “nothing about us without us” approach.
— Kavan Peterson, Editor and Director of ChangingAging and President of Harvest Home Care
Add your voice in the comments below and join us on social media using the hashtag #EveryPersonCounts!