What sets Caring.com apart from the pack, though, is the weekly Steps & Stages custom care guide geared to the three main stages of Alzheimer’s Disease (each divided into early, mid and late). Cohen spent nearly a year-and-a-half working on it with a geriatric psychologist specializing in Alzheimer’s Disease and a geriatrician. “They helped map the appropriate content to the symptoms, so when someone plugs in the details, we know what stage of the disease they’re at,” he says.
Cohen developed the service because he had found in his own caring experience that he didn’t know what to expect as things got worse each week.
“Doctors will tell you what they can and can’t do, but they don’t tell you what is likely going to happen next. They’re not in the business of bad news. They’re in the business of hope.”
Caregivers need the whole picture to plan for the future. For example, Cohen says, it helps to know that a parent with dementia is likely to start forgetting their recipes, so caregivers might want to write them down early on. Or that parents or spouses may start wandering, so caregivers should make their homes more secure.
For the later stages, the site offers listings and reader reviews of home care and assisted living facilities across the U.S.: “Having worked in health care myself for many years, I was impressed with the attentive service of the staff,” wrote one reviewer. “Not only were they kind and loving, but they went the extra mile to provide special treats and activities.” Another pans an agency it accuses of being “careless with our elderly mother.”
Cohen likens the reviews to the ones people seek on Yelp for restaurants or on TripAdvisor for hotels. “And the key thing is really the staff – are they caring and is there a lot of turnover? You can’t tell that on a visit but you get a feel for that from reviews,” he says.
Perhaps even more important, Caring.com’s online forums allow tens of thousands of caregivers wordwide to share their stories and help each other. Recently, one woman whose husband has vascular dementia complained that “he uses his biting tongue to try to cut me down,” and admitted that she was “having dark thoughts.”
Responses from the online community were swift. “If he recently learned his diagnosis, he's going through the predictable stages of grief for the loss of his life (anger, resentment, fear, shock, denial, depression),” replied one, ending with a reminder that “underneath it all your caring is appreciated.”
As a result, says Horsman, caregivers often form strong bonds online. Although her mother is now in a home, Horsman keeps in touch with her fellow caregivers through Caring.com, sometimes following them on Facebook and checking out pictures of their children getting married and the birth of their grandchildren. The members of her online care group have gone beyond providing support, Horsman says. “They’ve become friends.”
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