Care guide focuses on stages of Alzheimer's

Alzheimer's is the discussion, the dilemma, the disease that never seems to go away.

For many families, the dilemma is determining an actual diagnosis of the disease. Others say understanding what symptoms signal defining stages and potential treatment change are another source of stress.

With these concerns in mind, the website Caring.com has launched the first customized Alzheimer's resource for family caregivers. Titled "Steps & Stages," the interactive guide and support system also includes a customized e-mail newsletter that offers specific, stage appropriate advice.

"We have learned that most families struggle with this disease for an average of seven years before the loved one passes away," says Andy Cohen, co-founder and CEO of Caring.com.

"We give those families advice to understand where they are on the seven-year journey and the exact stage that could be in progress. We've been connecting an average of 180 families, who have identified the stage and moved to another with the advice and care of families going through the same thing."

Q. Your Custom Care Guide, which I can download, is daunting. I've never cared for someone with Alzheimer's. It seems to be an all-consuming responsibility?

A. Technology can do wonderful things. One woman we helped through "Steps and Stages," as we were developing various techniques, burst into tears. As my partner, Jim Scott, says, "We've crafted content that will help family caregivers get sane, doable, stage-specific advice for people taking care of a family member with Alzheimer's."

Q. We hear a lot about this disease from the Alzheimer's Association. Are you partnering with them?

A. We have shown our plan to the Association. Remember, they focus on awareness and fundraising to find a cure. They don't focus on what caregivers can do.

Q. You offer a free, customized service, obviously paid for by advertisers, and your stage assessment is the most important component, right?

A. Yes. The Custom Care Guide offers practical advice on what do about specific symptoms as your loved one reaches the different stages. You get some practical advice.

Basically, the "Steps and Stages" is a breakthrough on caring for a patient.

People begin by completing a brief Stage Assessment that the website uses to create a Custom Care Guide. The Custom Care Guide, plus a weekly newsletter you will receive from us, provides tips on how to handle different situations.

As new symptoms arise, just update the Care Guide and the advice changes, sometimes dramatically.

Q. You didn't develop this alone?

A. Oh, good heavens! We have more than 50 doctors and specialists advising us.

Q. Let's talk a little about Alzheimer's and dementia in general. It's not easy to diagnose.

A. The data speaks for itself:

— 61 percent of family caregivers say it takes more than a year to get an Alzheimer's diagnosis for a loved one after symptoms surface.

— 50 percent of families caring for someone with Alzheimer's do not know what stage of the illness their family member is in.

— More than 70 percent said this was the hardest challenge they've ever encountered in their life. They say it is more stressful than the economy, a loss of a job or other family relationships.

Q. Here's the issue that bothers me: Your data shows that 50 percent of caregivers "agree that they sometimes wish the life of the one they're caring for would end sooner so he/she wouldn't have to suffer from the progression of Alzheimer's." That's amazing.

A. Yes, it is, and it is a concern we hope our service will address. "Steps and Stages" helps family caregivers join Stage Groups where communities of caregivers with loved ones at a similar stage can connect online and learn from one another. Caregiving doesn't have to be a lonely experience.

Q. Where do we find this guide?

A. Start at our website, caring.com

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Jane Glenn Haas writes for The Orange County (Calif.) Register. E-mail her at jghaas@cox.net