Los Angeles: People With Memory Loss Speak for Themselves
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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.
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Comments
It is so good to read about what of all you are starting to do in the U.S. to include those of us with dementia in determining our own future, and hearing what we say about the help and acceptance we need.Congratulations to all involved.
Best wishes for your future efforts,
Shirley Garnett
Wonderful article on a terrific and inspiring conference.
RETIRED (PHYSICIST, HISTORIAN, PATENT AGENT, INVENTOR, HEALTH ADVOCATE)
By all accounts the LA conference was a breakthrough event, and special thanks are due to Rich Bozanich and Jay Smith for this. This comes on the heels of smaller steps over the last several years. Shortly after he started work as the new CEO of the Alzheimer's Association, Harry Johns got a petition signed by many persons living with AD asking that they be more involved in the work of the Association. He responded quickly and formed an Early Stage Advisory Group, which first met a few months later. Harry was surprised that the members of this group were young. He responded to that also and the association has focused much more on early onset AD. Thanks to the work of Harry and the Association, AD awareness in the media has increased greatly. Now the LA conference has made the point - reported widely - that those of us who live with AD can, and do, speak and act for ourselves. Many have helped to get us here. Now we who live it should all jump on this bandwagon quickly and loudly and finally take ownership of AD.
MGH/Harvard Medical School
I found this to be an interesting article and a long-overdue forum where those afflicted with AD could voice their concerns loud and clear to the general community, government bodies, and progress in AD research in general.
The complex etiology of AD (i.e. pathogenesis and early detection, etc.) has reached a point where research teams need to form an active, collaborative coalition for a cure. An excellent example is the Huntington's Disease Society of America (HDSA) Coalition for the Cure, where the main goal is to accelerate research towards understanding the disease and ultimately treating patients with HD. This unique approach to research builds strong collaborative efforts between international groups without the "fear" or concern that the data presented will be scooped. Unfortunately, the intrinsic competitive nature of biomedical research slows progress in the long run and contributes to an environment where the individual success of the research group usurps the contextual importance of scientific breakthroughs in understanding the pathogenesis of disease.
[Editor's note: John T. is a pseudonym.]
My wife is now into her twelfth year of this horrible disease and she is only 66 years old. Her illness was identified when she was in the workforce, and prior to her diagnosis she was treated dreadfully. One of my regrets is that there was very little available in the way of support when my wife was in her early stages. I hope that the Los Angeles conference helps to change this. AD can be a very long goodbye, and more has to be done for those who suffer from it, and for their caregivers.
[Editor's note: Paul Hillard is a pseudonym.]
I feel fortunate to have met Richard and Jay, and to have played a small part in this conference. The program they forged together was dynamic and useful to people with early-stage dementia. The entire day was paced to meet our needs.
This conference breaks the paradigm held by many professionals and lay persons of what people with dementia are capable of doing, if given a chance. The Los Angeles Chapter of the Alzheimer's Association took a brave leap forward by following these two inspirational people—by listening to them, rather than telling them: "We need to talk to your caregiver."
This conference forever changed the view of early-stage dementia. It proved that early-stage people can still be dynamic and useful to society, even though we may speak more slowly or stutter, or have a bad cognitive day.
A conference for people with early-stage dementia by people with early-stage dementia!?
Who better to know what we pwid's need to hear and learn?
Who better to understand that we still can contribute to society while living with the disease?
Who better to explain our experience living with Alzheimer's than ourselves?
Kudos to Richard and Jay for having the foresight and the guts to bring this idea forward, and to the Los Angeles Chapter for leading by listening to them.
Once again my hat is off to Gabrielle Strobel for her excellent coverage of the Los Angeles Early Memory Loss Forum. In her write-up, she mentioned that a PBS piece was in the works. It aired on PBS's News Hour With Jim Lehrer on Thursday night, January 10, on PBS stations across the United States. Streaming video is available at www.pbs.org/newshour/bb/health/jan-june08/alzheimers_01-10.html.
Thank you very much.
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