In January, PBS aired a special feature documentary about Alzheimer’s disease in the United States. When I heard the film’s title, Every Minute Counts, I thought it referred to the time we spend with a loved one with Alzheimer’s or another disease that will eventually take them away from us. I was wrong. The film is titled Every Minute Counts because it was produced to make the case that Alzheimer’s is a public health crisis that demands our attention right now.
The film profiles several people with Alzheimer’s disease and argues that funding for research into the disease is an ethical and financial imperative – something no one would rationally argue with. Still, Every Minute Counts has stirred controversy among some professionals involved in Alzheimer’s care because of what one critic, Dr. Bill Thomas, describes as the film’s “relentless focus on what many have called the ‘tragedy narrative.’”
Dr. Thomas is a geriatrician. As someone who has cared for thousands of patients with dementia, he deeply objects when “experts in the field . . . use the media to amplify and validate the message that living with dementia is solely and completely a tragedy.” He added, “We may never cure Alzheimer’s but we can, we must and we will tell a new story about the people we love and the journey we are sharing with them. It hurts me when the voices of people living with dementia are silenced.”
Why the fuss? Everyone knows that Alzheimer’s is awful.
Arguments surrounding Every Minute Counts run strongly parallel to the objections people with disabilities regularly voice about being treated as invisible, or as the focus of pity or inspiration – in essence, these are arguments about being objectified, written off or “otherized.” And just as people with disabilities have long fought, and today continue to fight, for integration into all aspects of community life, advocates for people with dementia are leading a shift in thinking about the role of communities in embracing and supporting people with dementia.
Dementia Friends, a program that began in the UK and recently arrived in the US, is an online video-based awareness building program that demystifies Alzheimer’s and offers viewers simple, easy-to-remember strategies for interacting with people having memory problems. The program starts with the deliberately normalizing assumption that all of us do or will encounter people with dementia everywhere: on our block, at the bank, the supermarket, drugstore, or our local library, for example. The message is clear: people with Alzheimer’s and other forms of dementia are or will be our neighbors, friends, family members – maybe even ourselves – human beings who are, and deserve to remain, part of our communities to every extent possible.
ICS’s Dementia Program Director Nettie Harper took issue with Every Minute Counts because of what she sees as deeply flawed assumptions the film accepts about people with Alzheimer’s.
“It was disappointing the way the physicians spoke to the patients in the film,” Nettie told me. “Sonia’s physician treated her like a child, speaking about her in front of her, as though she wasn’t there.
“You should never approach a person with Alzheimer’s by saying, ‘Remember me? Remember me?’ as Sonia’s doctor did. Then he rattled off questions at a very fast pace, without pausing to allow her to even try to respond.
“Even worse, the doctor actually used the phrase ‘shell of themselves’ when he was talking about patients with Sonia’s disease in front of her. Just imagine yourself being spoken about like that! And then he said, again, as though she wasn’t even present, ‘I’m really worried about Sonia.’
“Having this type of conversation in front of a person with dementia shows a complete lack of compassion and awareness. And in the film you can see Sonia’s facial expression become more and more despondent as the office visit goes on.
“We have millions of people with this disease and more diagnosed each day. Physicians need education now on how to effectively and respectfully interact with patients.
“People with Alzheimer’s are human beings who still have the ability to make connections, who still feel emotions and deserve to be treated with dignity and compassion. And regardless of how advanced the disease, regardless of the functional loss or the loss of ability to communicate directly, treating someone like an object that has no emotions or awareness is just not okay.
“The film makes the point that caregivers are overwhelmed, which, of course, is very true and a tremendous concern. But I know from my experience working with families that much of this happens because caregivers don’t know where to turn for help – practical help or emotional help. Physicians need to be educated how to get caregivers connected with resources in the areas where they practice.
“Regarding the move of Phyllis [another patient in the film] to an assisted living facility, I was embarrassed for the facility marketing director when she explained that the facility offered nonstop activities and the example given was a ball toss.
“Activities need to be individualized. Everyone needs a sense of purpose and we heard Phyllis call herself a semi-retired nurse. This facility could easily have involved her in meaningful activities. For example, older adults are at risk for dehydration; they could have started a refreshment cart and that could have been Phyllis’ job. She could have read to some of the other residents who were more progressed in the disease process. She was someone who was clearly still able to use many of the caring skills she employed as a nurse, so they should have been using her strengths to allow her to have more meaning in her life. As it was, it’s completely understandable that she was uncomfortable living there and wanted to go home.
“I certainly understand that we need much more money dedicated to research for a cure, but I think this film is the wrong way to go about it. We need to show that people with dementia can still live and have meaningful connections. If I was diagnosed with a memory impairment and my only view of people with dementia was the way patients were treated in this film, I would just want to give up.”