Alzheimer's Today
Once considered an elderly affliction, it is now claiming younger victims
Dark days. In the clinical trial arena, studies of new therapies are aimed mostly at the older population of dementia sufferers–not surprising as there are so many more of them. But younger victims desperately want to participate. "If there was a potential treatment that was pretty risky, I'd be willing," says Gerry Michalak of Getzville, N.Y., 63, a former schoolteacher who was diagnosed with Alzheimer's in 2005, six years after he first started having memory problems. "Hey, if things stay as they are now, I'm going to die anyway."
The disease, and the constant struggle to keep the mind in working order, can easily drive younger people with family and other demands into deep depression. Tracy Mobley, who was diagnosed with Alzheimer's four years ago at the age of 38, says there was a time when she felt at the end of her rope. "I just stopped trying to live. I stopped taking my pills," says the 42-year-old from Springfield, Mo. "And, of course, that made things a lot worse." The dark days stretched into a week, until her husband and a friend talked about what she did still have to live for: Austin, her 12-year-old. "I realized that I still had a son to raise," says Mobley. "I've had a few bad episodes since then, but I know I have to keep fighting for my family."
Schneider is counting on his strong faith-he prays regularly and fervently and believes that God will not give him troubles that his faith can't handle–to carry him through the deeper stages of Alzheimer's. He's heard all about the hostility, the paranoia, and the rages that later accompany forgetfulness. This is all too common among patients who view family as strangers, ordering them around and stealing from them objects that they can't recall putting someplace else. The idea of turning on his family scares him more than anything.
But since there's no sign of that yet, Schneider focuses on more positive things, like his latest campaign to find a place for early-onset Alzheimer's patients to spend their days to avoid becoming shut-ins. The model: community cafes for dementia patients first developed in Australia. "For people just with memory problems, and who can still communicate a little, they can go in there, drink coffee, play checkers, and talk to each other a little while their spouses go out and handle business instead of having to watch them 24 hours a day," says Schneider. For them, it would be a tiny bit of normalcy in an increasingly abnormal world.
ONLINE ALZHEIMER'S RESOURCES:
- Early-Onset Alzheimer's Fact Sheet: I'm Too Young to Have Alzheimer's Disease (.pdf)
- DASN International: Dementia Advocacy & Support Network
- Defining the Disease: Early-Onset vs. Familial
- Early-Onset Alzheimer's: An Interview With a Mayo Clinic Specialist
- Younger Onset Dementia: Planning, Employment, Next Steps, Personal Insights, & More
- Online Chat & Support Group: Dementia Rescue
advertisement
