In the summer of 2000, following a diagnosis of Lewy Body Dementia in the family, Ann Hilgeman set out to find what she could about the disease. In October the same year she wrote:

A few months ago I had never heard about the disease and knew absolutely nothing about it. Then my sister-in-law was diagnosed with LBD. Its been a big scramble for information ever since.

While she discovered information on various web sites, it was no easy task and she knew no one else who had the disease. In August 2000, therefore, she started an email group, The LBDcaregivers. The first message in this group read:

"My mother has LBD. What can I expect? Is it a rapid change in her personality and body or gradual?"

It very soon emerged that there were many in the same situation. A diagnosis of LBD appeared to raise more questions than answers. The disease appeared to be little known, amongst those who suddenly had to cope with its effects, this often included medical practitioners and other professional health caregivers as well as the person with the disease and their loved ones.

The group quickly grew in numbers and within a year there were ninety members, mainly from the USA, but also from Canada, Australia, the British Isles and the Channel Isles.

Members exchange experiences and frustrations, give tips for dealing with situations and offer support to each other. When someone finds useful information about LBD they share it by posting addresses of websites or enclosing relevant articles. Many find LBDcaregivers an absolute lifeline.

While symptoms, rate of progress, degree of fluctuation, usefulness or danger of certain medications, vary dramatically from person to person, many problems are common ones and experiences of others have helped immeasurably:

"Thanks for your experiences. They sound so much like mine.
These are the exact same symptoms my mom had.
It's a relief to hear that my mom isn't the only one with auditory rather than visual hallucinations.
Your dad sounds a lot like my husband.
Thanks to you all for all the information. I never realized how I wanted to talk to someone else about LBD. When friends call, you try to explain what you found out or how things are really going, but they are not truly interested in the details and do not understand. I have gleaned more information from all of you in the past three weeks than I ever could any other way.
Dad can go back to the nursing unit for a couple of days before returning to his private apartment. I am grateful for that, because I know he'll get good care, but I'm also concerned that being in an unfamiliar place will also be disturbing to him. Does anyone have any relevant experience or advice for me?"

Sharing emotional feelings have helped those on the site feel less alone:

"I miss the person my husband was when he was well, I'm sad our life has had to change so much, I miss having someone to share responsibilities, and I'm angry about the attitude I encountered from some health professionals in trying to find help.
Some days he is responsive to my mother, sister and me; other days, he breaks our hearts."

The lack of knowledge of LBD is reflected by the fact that there is even no real agreement amongst those in the medical profession, who actually know or acknowledge the disease, about its name. We have chosen Lewy Body Disease as the best name out of a range of possibilities. This has meant that while 90 or so individuals who belong to the LBDcaregivers site have had the benefit of sharing vital information and experience needed to deal with the disease, it is very clear that many, many thousands of people with similar problems have no way of accessing this information.

Furthermore, as one member put very succinctly:

"I want to see the public brought to focus on the social and economic issues of an aging population with serious degenerative diseases including LBD and fewer and fewer people to do the care giving. I want to see society get their heads out of the sand and start figuring out how we are going to manage. It's probably too late to help my mother. I want to see other families spared this grief. I want to stop feeling scared of the future."

For all these reasons the group felt very strongly that there was a crying need for an LBD organization which could reach out and inform caregivers, people with LBD, the medical and caring professions and the general public. The first steps in creating the Lewy Body Disease Association have been taken on the initiative of Imelda Fagin, whose husband has LBD. She has gathered together a small group of volunteers from the site, but at the same time ensured that all members have the opportunity to become involved. Our first venture is the creation of this web site, which is under continual development and expansion. We hope that you will find it informative, useful and thought provoking.

In April, 2002, a second group of caregivers was formed, this one for spouses of LBD patients. There are some issues for 'Caring Spouses' that are different enough (intimacy, for example) that spouses felt more comfortable talking only among themselves.

Both groups, Caregivers and Caring Spouses, continue to grow. In September, 2003, the two groups combined, are approaching 500 members. In February, 2004, the groups have mushroomed to over 565 members. In September, 2004, they're approching 800 members.