Speaking out about Alzheimer's

By Marsha King
Seattle Times staff reporter

STEVE RINGMAN / THE SEATTLE TIMES Dorothee Lundgren was diagnosed with Alzheimer's at age 55. She sometimes struggles to recall words.

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They knocked on neighbors' doors in their Auburn cul-de-sac: "Just so you're aware ... if you see Dorothee do something strange. ... "

In church at Thanksgiving a few months later, Dorothee stood up with a new grandson in her arms: "I'm thankful for my grandson ... and I'm sick."

Soon the couple joined the Alzheimer's Association, seeking support and ways to contribute. Dorothee, once a top Tupperware saleswoman, began telling her story at public events in halting but heartfelt words. The couple started a Web site. They gave interviews to newspapers and a TV crew.

People with dementia traditionally have retreated from regular life, rarely heard or seen. Former President Ronald Reagan, who died Saturday, was one of the first public figures to speak out and say, "I have Alzheimer's disease."

But now a provocative grass-roots movement is under way.

Dorothee Lundgren and others in the early stages of the disease are confounding stereotypes and transforming the face of Alzheimer's around the world.

A Journey Through Dementia Two years ago, three Seattle-area families broke the silence of early-onset dementia and agreed to share their experiences. we recently rejoined those families. Losing Betsy Now | Photos A family pulls together Then | Photos The journey begins Losing John Now | Photos Bittersweet partings Then | Photos Harsh middle stage Losing Debra Now | Photos A husband must choose Then | Photos No longer caregiver · Alzheimer's resources · About this series

They are working in the community, communicating on the Internet, volunteering, even writing books and climbing mountains. The activists among them are lobbying for more financial support for medications and in-home care, more research, and public understanding and support.

And they are reshaping Alzheimer's associations worldwide, which historically have focused more on caregivers, by pushing for more services and a stronger voice within the organizations.

"People with Alzheimer's are seeing themselves as part of the disability-rights movement," said Dan Kuhn, an author and national expert on Alzheimer's disease in Chicago. "The Americans with Disabilities Act derives from people with physical disabilities. People with cognitive disabilities are starting to say, 'What about me?' "

This cultural shift is being driven by earlier diagnosis, better medications that may slow symptoms and technology converging with the first wave of aging baby boomers being diagnosed with an early-onset form of the disease.

"I think it's a natural part of becoming a mature movement," said Patricia Hunter with the Alzheimer's Association, Western and Central Washington. "We have to hear what they want and help."

'Life after diagnosis'

A global turning point came last October when Alzheimer's Disease International for the first time named a person with early-stage dementia to serve on its board of directors.

The organization represents the national Alzheimer's associations of 66 countries. Its main mission is to heighten global awareness of the disease, raise money and encourage research.

The board decision was pushed by a small group of people with dementia who found each other on the Internet several years ago.

"We needed to let the world know there is life after diagnosis," said Lynn Jackson, a former nurse in Vancouver, B.C., who was diagnosed with progressive dementia five years ago at age 43. "We're staying better for longer. ... We've made the world sit up and look."

She's also a founding member of the Internet-based Dementia Advocacy and Support Network International. In 2000, the network started in online chat rooms, where computer-literate dementia patients around the world compared notes on living with the disease.

A year later, the group's founders met at one member's farm in Montana. They wrote a proposal recommending that Alzheimer's associations offer early-stage patient-support groups, counseling, social interaction, Web sites and opportunities to lead. Two representatives presented the idea at Alzheimer's Disease International's headquarters in London.

Over the next two years, people with dementia were invited to speak and lead workshops at world Alzheimer's conferences.

Finally, Christine Bryden, a founding member of the Internet group and a retired executive with the Australian prime minister's office, was elected to the Alzheimer's Disease International board.

Bryden, now 55, was diagnosed in 1995 with Alzheimer's.

"It's about baby boomers," she said. "We'll fight this. Seek the best drugs. Seek support and encouragement. We won't fall into depression even though it's hard."

Association responding

In North America, the British Columbia Alzheimer's Society named a person with dementia to its board of directors in June 2002. A year later, Canada's national association followed suit.

Elaine Wright, diagnosed with Alzheimer's disease at age 47 in 2001, serves on the B.C. board. She used to be an account executive for a national communications company. She now educates groups about the disease and lobbies for better health coverage.

Last fall, Wright became the first Canadian, perhaps the first person ever, with Alzheimer's to climb Mount Kilimanjaro in Africa. She made the ascent with her teenage son and others to raise awareness of dementia and raise money for the cause.

Her election, she said, "puts a voice to that god-awful disease that has not been spoken about for so many generations. It raises hope we're not going to hide anymore."

In B.C., people in the early stages of dementia lead their own support groups, wrote a booklet for people with dementia and created a video advising them how to communicate with their doctors.

The U.S. Alzheimer's Association is responding to the early-stage movement. "It's transformative," said Michael Splaine, director of state policy and advocacy programs for the U.S. Alzheimer's Association. "It's creating wonderful havoc with all of our thinking, our systems, our programs, our governance."

The nearly 25-year-old association was founded to help caregivers cope. Now, it's being challenged to also help people with the disease make the most of their skills and talents.

The early-stage movement in the U.S. started several years ago at the grass-roots level when some chapters started offering education classes and other services for people with dementia. In October 2002, the U.S. Alzheimer's Association formally committed "to the full participation of people with Alzheimer's disease in all aspects of the Association's work."

Last year, for the first time, the national association invited people with dementia to speak for themselves at its national education conference in Chicago.

"It was a real landmark experience for the national association," said Kuhn, the Alzheimer's disease expert, who facilitated the panel discussion before hundreds of spectators.

A unique contribution

For all its support, the early-stage movement raises difficult questions, too.

Should people early in the disease be steered toward political activism, or is that exploitation? Should they serve on committees or boards of directors, or would that be tokenism? What happens when they inevitably decline and can't contribute effectively?

The national board does not yet include a person with dementia. But the association is recruiting potential board members, including those with Alzheimer's, said Sheldon Goldberg, president and CEO. The Alzheimer's Association, Western and Central Washington also has decided to recruit someone with early-stage dementia for its board.

The chapter also is researching the effectiveness of the education classes it offers people in the early stage of the disease. The results will be significant for chapters nationwide.

Proponents say people with dementia make a unique contribution to Alzheimer's organizations.

"They are the core of our work and they don't need to have any higher profile than to be a person diagnosed with this disease. That to me is their credential," said Lisa Snyder, a clinical social worker for the Alzheimer's Disease Research Center at the University of California, San Diego.

In 2000, Snyder wrote "Speaking Our Minds," one of the first books to give people with dementia a public voice. She supports a term limited to one year on the national board because of the progressive nature of the disease and to give as many different people as possible a voice.

Kuhn emphasizes the association needs to focus on the remaining abilities of people with dementia and help them make the most of life.

But there's also a dilemma, in his view.

"How do you get funding from Congress if you don't depict this as the worst of the worst conditions? You're competing against AIDS and cancer," Kuhn said. Characterizing the disease as a chronic condition people can live with undercuts the message that tugs at the heartstrings, he said.

The Lundgrens want the Alzheimer's Association to focus more on families and provide recreation and social opportunities for people with dementia.

The couple also expects to keep speaking out and perhaps testifying before lawmakers. But in the end it isn't necessarily about what the person says or how he or she says it, Dick Lundgren says.

Take Dorothee. Three years since her diagnosis, it's now hard for her to speak at a microphone in front of a crowd.

"She says things very slow because she has to get it straight in her head," Dick said.

Nevertheless a powerful message comes across. She's still active. She still wants to count.

As Dorothee said: "I'm just a normal person."

Marsha King: 206-464-2232 or mking@seattletimes.com

Copyright © 2004 The Seattle Times Company

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