Many Web sites offer help for stressed caregivers in general and information on Alzheimer's disease in particular (the Alzheimer's Association site is particularly comprehensive). But they don't fully harness the Web's interactivity to provide specific, tailored advice regarding Alzheimer's — recommendations that necessarily change as patients' behaviors and symptoms shift.
The folks at Caring.com, a site introduced more than two years ago, have just unveiled an online tool to perform exactly that function. Many of the site's visitors apparently found it difficult to know how to respond to changes as their loved ones declined — and to anticipate what's coming next.
"People feel they're always surprised," Andy Cohen, the site's chief executive, told me in an interview. "They don't know what to expect."
When you log into the new "Steps and Stages" tool and enter a few details about your family member, you're directed to a guide that identifies the stage of Alzheimer's disease or other dementia this person appears to have, explains what's happening and provides tips on managing symptoms.
You'll see advice on how to care for yourself and build a support network. You can sign up for weekly newsletters with further counsel via e-mail. All these options change as you update your relative's condition. Online chat groups also are divided by stage, so that caregivers still dealing with mild impairments, for instance, can talk with others in their situation, not those whose relatives can no longer speak.
Testing the site, I invented 73-year-old "Aunt Meredith," who occasionally repeated questions and stories within minutes, forgot appointments and important tasks, and had to leave herself reminder notes — but could care for herself. (I decided to overlook the fact that I myself had forgotten to meet a friend for coffee last week and that I keep reminder notes stuck all over my house.)
I can see how useful this stage-specific tool might be to a caregiver, and a couple of experts I consulted, who tried out the tool, also applauded the idea. They mentioned some potential shortcomings, however.
Dr. Laurel Coleman, a geriatrician who sees many Alzheimer's patients in her practice at the Maine Medical Center in Portland, Me., pointed out via e-mail the "tremendous amount of individual variation" in this disease. Even supposedly customized advice won't cover every situation. Most people with late-stage Alzheimer's can no longer walk, for instance — but some can, and different tips will apply than for those who are bedridden.
Dr. P. Murali Doraiswamy, a prominent Duke University researcher who literally wrote the book on early-stage Alzheimer's, found much of the content of high quality but expressed some misgivings. Accurately assessing the stages of Alzheimer's requires looking at many facets of behavior, cognition and function, along with memory, he pointed out. A truly comprehensive questionnaire, with a checklist of dozens of symptoms, probably should take half an hour to complete.
So he's afraid that users will get misleading responses. Dr. Doraiswamy entered a fictional middle-aged man who occasionally forgets to refill prescriptions and leaves himself reminders. "This basically could be me, just a healthy, busy 45-year-old with no dementia whatsoever," he said by e-mail. The tool informed him that those symptoms are typical of mild-stage Alzheimer's disease.
He found that worrisome. "Many people with depression or all sorts of conditions unrelated to dementia will be told they have dementia and get the scare of their lives," he said.
Plus, the staging of Alzheimer's disease, as The Times has been reporting, is probably about to change, for the first time in 25 years. Caring.com's tool will have to change, too.
Yet girding caregivers with useful information is clearly crucial. If users understand (and Caring.com points this out in the small print at the bottom of the page) that no online guide can substitute for a thorough medical assessment, they might be happy to have it.
So let's harness our own interactivity. Lots of New Old Age readers have in-the-trenches experience with caring for family members with Alzheimer's disease — something I've been spared, so far. I hope some of you will give theSteps and Stages tool a try, then share your comments here. (Be aware the site will ask for your e-mail address, though it promises not to use it for spam.) Let the rest of us know how valuable — or inadequate — you find it, and why.
