The Tangled Neuron

Orien Reid Nix: Alzheimer’s Disease International and Baby Boomers at the Crossroads

Orien Reid Nix is a baby boomer with a family history of dementia. She is also Chair of Alzheimer’s Disease International.

Last week, she gave a keynote address at the Wisconsin State Conference on Alzheimer’s Disease and Related Disorders in Milwaukee. In her talk, she focused on the devastating effects of Alzheimer’s on baby boomers, both as they care for their elders and as they develop their own memory problems.

Orien Reid Nix and Corinne Reid Owens

Ms. Reid Nix was accompanied by her aunt, Corinne Reid Owens, a civil rights activist in Wisconsin. Ms. Owens is 95, and does not have Alzheimer’s. But several of Ms. Reid Nix’s family members, including her mother, had the disease. In her speech, she talked about the challenges of caring for her mother while still caring for her children – a common situation these days. Estimates of the number of Americans in the “sandwich generation” run as high as 20 million. There’s even a new term, “club sandwich generation,” to describe people who are caring for three generations.

Does Loss of Memory Mean Loss of Self? A Webcast

My friend Don Moyer, who blogs about his wife Jenny's memory loss and about memory loss in general, will be one of the guests on a HealthTalk webcast Wednesday (April 9, 2008) at 4 pm Pacific time. He, Jenny and Dr. Renee Beard, a geriatric sociologist at the University of Illinois Chicago, have published a paper about the rich and meaningful lives people with memory loss lead.

You can read more about this webcast, and register to participate here.

Alzheimer's Research at a Crossroads: a new conference report

Summary: A new conference report from the U.S. National Institute on Aging summarizes the presentations, discussions and recommendations of top Alzheimer’s researchers. From my layperson’s point of view, the report shows three reasons why Alzheimer’s research is at a crossroads:

1. We don’t really understand what causes memory loss and dementia.
2. Every brain is different, and multiple factors and diseases may underlie any one person’s memory problems.
3. Overall, research to date has not yielded the hoped-for answers.

Of the many recommendations made to the NIA, the ones involving broadening the concept of Alzheimer’s and collaborating with scientists in other fields make the most sense to me. The NIA meeting and report seem like good first steps towards consensus on which road to take.

Over the weekend, I’ve been reading through an excellent report on a conference on Alzheimer’s convened by the U.S. National Institute on Aging (NIA). The conference took place in October 2006, on the 100th anniversary of Dr. Alzheimer’s discovery of plaques and tangles in the brain of his patient Auguste D.

David Shenk's Talk on Alzheimer's at the Early Memory Loss Forum

Two years after my father’s death, people ask why I’m still researching and writing about Alzheimer’s and dementia. I tell them I want to help other families who are going through what mine did. I also tell them that Alzheimer’s researchers are teaching me a lot about science. What’s harder to explain is that people with dementia are teaching me a lot about life.

David Shenk, author of The Forgetting: Alzheimer's: Portrait of an Epidemic, put this into words during his keynote speech at the Early Memory Loss Forum.

David Shenk, author of The Forgetting, with Judy Wurtz, Director of Volunteers and Member of the Board, California Southland Chapter of the Alzheimer's Association at the Early Memory Loss Forum

Early Memory Loss Forum in L.A.

Congratulations to Rich Bozanich and Jay Smith, co-chairs of the Early Memory Loss Forum held in L. A. this past Saturday! The sold-out conference was their brainchild, and as far as I know, was the first to be planned by people with dementia for people with dementia.

I'll post pictures and information from the conference in a few days. In the meantime, you can read Gabrielle Strobel's excellent summary at the Alzheimer Research Forum.

Early Memory Loss Forum

In late October, I’ll be going out to Los Angeles to attend a one-day symposium for people with early memory loss. The symposium, called “Living Our Lives, Planning Our Futures” will feature talks by David Shenk, the author of The Forgetting, and Dr. Gary Small, Director of the UCLA Center on Aging and author of several books on improving memory and brain health. The event is hosted by the Alzheimer’s Association California Southland Chapter, in cooperation with the University of Southern California (UCLA) and the UCLA Alzheimer’s Research Center.

The real meat of the program will be the eight breakout sessions on topics such as “Communications and Relationships,” “Stimulating the Brain,” and “Re-defining Early Stage Dementia.” Persons with early memory loss or dementia will be on session panels, and audience participation is encouraged.

The event is the brainchild of Rich Bozanich and Jay Smith, both of whom have been diagnosed with early onset Alzheimer’s disease. Rich, a former journalist, and Jay, a former architect, met in a support group in southern California. When the New York chapter of the Alzheimer’s Association put on a conference for people with early memory loss, both men were intrigued. They decided to develop a similar conference in LA, and the local chapter agreed to help.

Rich Bozanich (left) and Jay Smith
photo courtesy of James Smith

Now co-chairs of the symposium, Rich and Jay have worked for over a year to develop the event to meet the specific needs of persons with early memory loss, mild cognitive impairment and early-stage dementia. They chose the breakout session topics based on the results of a survey they sent out to members of various support groups.

“We have people planning to attend from New York, Colorado, Minnesota, Oregon, Hawaii, British Columbia, and Washington, D.C., among other places,” Rich says. He expects attendees will be a mix of persons with early memory loss, care partners and professionals.

Rather than the typical format - educational sessions for care partners and “day care” for persons with memory loss - all attendees will be welcome at all sessions. Jay and Rich hope that care partners and professionals will learn from the panelists and attendees who have memory loss.

The idea of services and support for persons with memory loss by persons with memory loss seems to be an emerging trend. Two online support groups, DASN International and DementiaUSA are run by persons with dementia. Another group, forMemory, is being organized to share information about treatments for early onset Alzheimer’s and related diseases. After all, who knows best what people with memory loss need?

The Early Memory Loss Forum will be held on October 27, 2007 at the Skirball Cultural Center in Los Angeles. For more information, please call 323-900-3180 or email earlystageforum@alzlarsb.org.