Alzheimer's speaks out; Listen Please!

A tremendous meeting of people with Alzheimer’s energizes efforts to better their world.

A remarkable conference of people experiencing Alzheimer’s energized efforts to improve their lives. Organized by Jay Smith and Richard Bozanich, two driven men in the early stages of Alzheimer’s, the October 27 event packed Los Angeles’ Skirball Cultural Center. Even the week-long drama of massive L.A. fires which caused the evacuation of over a million people did nothing to deter participants, and many were turned away because the seats sold out.

The Alzheimer’s Association was the conference’s backer, and Peter Braun, its Chapter President, opened by stating, “This is the largest gathering of people with dementia in our country.” He was followed by Smith and Bozanich, who drew a standing ovation as they called on Americans to hear the voice of early-stage Alzheimer’s.

They were followed by speakers calling for practical and immediate improvements to the current state of affairs: doctors to become better skilled at diagnosis, therapists to be better educated in ways to help them live well, and society at large to be better informed on how to relate to and be supportive of them. The conference received a lot of publicity. PBS and HBO crews were on-site, and the Alzheimer’s Association will be turning footage into a presentation they plan to take on the road nationwide.

All this publicity will get some very important messages out to the world. Here are a few.

The Message to Doctors: Get the Best Diagnostic Training

Clinical diagnosis in the early stages of Alzheimer’s requires experience and skill. No doctor wants to risk misdiagnosing ordinary aging, unrelated illnesses, or medicinal side-effects as Alzheimer’s. The result is intense caution by doctors about offering a diagnosis. When someone notices a symptom that might indicate Alzheimer’s, it could be a long road until the doctor makes a clear diagnosis.

Yet an early and accurate diagnosis means so much to people. People shared their journeys with this reality. (Paraphrased)

•“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.”
These calls for doctors to be better educated in the latest diagnostic techniques and tools were significant moments. A formerly vague complaint has now crystallized into a firm voice.

The Message to Everyone with Alzheimer's: Choose to Live Life

Immense victories in the Alzheimer’s fight were brightly seen in stories people told about their lives after 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.”
These are very different voices than those described from the past. In an interview, Bozanich noted, "My mom's uncle Irwin got this, and we never saw him again. I didn't want the same thing to happen to me, to be sequestered away like people are ashamed of me. I didn't want to go quietly." This conference was an affirmation that things are different today. The message: People with Alzheimer’s can do so much, both spiritually and physically. They are very alive and can make great choices about how to live. Says Smith, “There’s still a lot of good living to do.”

The Message to Family and Friends: Relating Right Requires a Little Learning

No less important were the simple tips of social queues to the broad circle of people close to those who have Alzheimer's.

•“People with early-stage dementia resent the term ‘caregiver’. We prefer ‘care partner’ because, for the most part, we can still take care of ourselves very well, thank you.”
•“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.”
The reach of these messages promises to be truly great, what with so much media attending the conference, and the Alzheimer's Association videoing it for display across the country, .

Elyse Salend, a specialist on aging who works for the grant-giving Archstone Foundation, said, "I felt awed by them, by their courage. They're not hiding out. They're trying to make the world better for all of us."

Mr. Bozanich is leaving the success of this conference with a crystal clear mission. "As long as I'm able to talk about it," he said, "it's important to speak out about what it's like to live with this."