29 October 2007. On Saturday, 27 October, in Los Angeles, an unusual conference marked a paradigm shift in the Alzheimer disease movement, or so its organizers hope and vow. Put together jointly by Richard Bozanich (see ARF Q&A) and Jay Smith, two men with early-stage memory loss, the day-long gathering drew a mixed crowd of people with early-stage dementia, their friends and caregivers, people who are at risk of developing AD, and professionals in the field. The purpose of the conference was not to have professionals speak to caregivers, as is typically the case, but to give voice to people in the early stages themselves. This combination made for an intense mix of sharing experiences, frustrations, and efforts to transcend the suffering, but also a loud call to action. The day began and ended with a rallying cry to stop being “polite,” to step up the pace and urgency of advocacy for more research funding, better medical care, and for more programs designed for people at early stages of dementia. “You are the moral voice to bring word about the disease, and about the need for change,” Michael Splaine, who directs advocacy programs at the Alzheimer’s Association, told the audience. The conference title is Living Our Lives, Planning Our Futures. Early Memory Loss Forum).
The event took place at the Skirball Cultural Center, a meeting venue nestled into the hills of Los Angeles’ Bel Air neighborhood. The conference sold out weeks ago, and the organizers had to turn away scores of people who called, e-mailed, and otherwise pleaded to be let in. Mailed-in prepayments had to be returned to comply with fire regulations, and in the morning there was a standby line of people vying for last-minute seats. A week of dramatic fires in the LA area did not deter patients and partners from filling the auditorium to its maximum capacity of 350 people. The proceedings were taped and will be shown at Alzheimer’s Association events in towns around the country.
Bozanich and Smith had the idea for the conference and created the program over the past 14 months notwithstanding their cognitive impairment. The California Southland Chapter of the Alzheimer’s Association provided fundraising, logistic, and planning support. The chapter’s president and CEO, Peter Braun, noted that the conference marks a “transformational moment” in the AD movement. Traditionally, people used to be diagnosed further into the disease. They relied on impassioned caregivers and the Alzheimer’s Association to speak for them. They tended to be hidden from view and could not participate actively in efforts to raise awareness and advocate. At the conference, both the tone and the language were different from those days. To cite but one example: people with early-stage dementia resent the term “caregiver.” They prefer “care partner” because, for the most part, they can still take care of themselves very well, thank you.
“More than 200 of you in here are living with dementia. This is the largest gathering of people with dementia in our country,” Braun greeted the crowd. “Our network of agencies, universities, and institutions has come to hear your voice.” And speak they did. Bozanich and Smith’s introductory invitation to make the voice of early-stage dementia heard drew a standing ovation, and throughout the day patients stood and made their points. Defying the commonly held notion that people with dementia have no insight into what’s wrong with them, those assembled at this conference clearly articulated their impairment. They talked about how it forced them out of work and turned their lives upside down. Diagnostic uncertainty was a recurrent theme throughout the day. People repeatedly spoke of the burden of living in a grey zone of failing abilities but without a diagnosis. Here are some paraphrased samples to reflect the range of what they said:
- “I was aware I was slipping at work. I could not contribute ideas at meetings anymore. I went into my office and just stood there, not knowing where to start, even though I knew there was a lot to do. I thought it was stress, so shifted to a simpler position but could not learn its tasks. I felt scared. One day I called in sick and never went back. From there it was a long and bumpy road to diagnosis.”
- “I had eight diagnoses in 18 months. Time after time, doctors said ‘It could be…,’ ‘It could develop into…,’ ‘You have a risk for…’ It was very difficult to live with this vague information.”
- “As long as I had a diagnosis of mild cognitive impairment, my doctor did not give me medications. I needed to be diagnosed with AD to get them.”
- “Compensating for my subtle impairments fatigued me so much, I ended up spending two days in bed after what used to be routine business trips. I had to retire and start a long search for diagnosis.”
Many speakers shared how they coped with the diagnosis:
- “I accepted it right away. I reassessed my life and priorities, began to plan and accommodate, and made some commitments about judgment.”
- “At first I was in a dark phase. Then advocacy became important. I met people in a similar situation who have become a family of sorts. I will not lead a stigmatized life.”
- “I joined a memory club, participate in research studies, took up ceramics, and put in a 600-gallon pond in our backyard. I take care of my mother, who has AD and lives with us. I try to focus on the positive and the beauty of each day.”
- “We moved into a smaller house. We simplified our life. I gave up handling our finances. I try to adopt routines of exercise and healthy living, and I found an unexpected spiritual gift in recognizing where I am in life and living fully what I have left.”
Speakers also advised family, friends, professionals on how to help:
- “Be patient. It makes a world of difference.”
- “Accept it. We go through a tunnel of denial at first. When we come out the other end and have found acceptance, accept along with us. Don’t make us insist and explain that we do have a problem.”
- “Getting here took me two hours. That’s no biggie for me. But I do want to be able to reach events without having to ask for a ride.” Getting a diagnosis can mean the eventual loss of one’s driver’s license. Support groups and other events should plan to be within reach of public transportation.
Throughout the day, people voiced frustration with doctors, especially when their doctors were uncomfortable telling them candidly that they are not able anymore to think the way they used to, or when doctors simply told them to come back a year later. (It’s worth adding, however, that the approach to diagnosis varies with the individual. Some people don’t want their doctors to force them to face a problem they prefer to avoid or deny. A conference like this tends to draw, and highlight, a self-selected group of proactive personalities who deliberately choose openness.) Related concerns revolved around a fragmented health care system ill-equipped to support people in the aftermath of a diagnosis that implies major life changes. Furthermore, people called on all presidential candidates to explain how they plan for an upcoming epidemic of dementia as the baby boom generation ages. Others called on Congress to pass legislation to ensure that people do not face insurance or employment discrimination if they choose genetic testing for AD.
The program featured a medical update by Gary Small of University of California, Los Angeles, as well as a lecture by David Shenk, author of The Forgetting (Random House, 2003). Shenk rallied the audience to get angry about a national lack of adequate funding, and to use their still-vigorous faces and voices to demand more resources. Shenk also showed the first of a series of four short, downloadable Web movies he and collaborators are producing with funding from the MetLife Foundation. In two breakout sessions, the program offered workshops on eight different topics. (Full disclosure: this reporter moderated workshops on the topic of Current and Future Treatments.) The conference had an advisory committee of 52 members of various local institutions, who are working with the Alzheimer’s Association to build programs for people with early-stage dementia in Southern California. A different kind of follow-up might come, as well: crews from PBS and HBO were on-site to film and interview people with early-stage dementia.—Gabrielle Strobel.