Family caregivers – supported and informed online -- but there's a long way to go

Online searches – not always helpful -- underpin the caregiving role.  The latest Pew research about health information and family caregivers reinforces what we know.  Family caregivers search online for information to help them provide care.  Information about medical problems, treatments and drug information top what they seek – and I bet they find.  The Internet has become a 'neighborhood' for asking what might be difficult to ask your next door neighbor. In this online neighborhood, you find that others have symptoms like yours, experienced relief from medications or found a cheaper pharmacy. Yet these resources are not quite like the neighborhood of old: Given that 84% of family caregivers have gone online seeking information, only 59% of caregivers with Internet access indicate that online resources have helped them with caregiving, and only 52% indicated that they help with caregiving stress.

Family caregiving is a responsibility across all age groups – for longer than ever.  Responsibilities weigh the most on older baby boomers, 44% of whom identify as family caregivers, possibly sandwiched between their children and aging parents.  Half of those who care for an adult identify a parent or parent-in-law. Interestingly, 30% of the 65+ identified themselves as family caregivers in this survey – perhaps in a multi-generational home with their children. Or perhaps they are the responsible family caregiver for one of the nearly 2 million seniors aged 90+, most of whom are women. It's also no wonder that family caregivers are more likely, according to the Pew study, to have encountered health issues of their own when compared to those who are not caregivers.

Forget about the smart phone medication apps – and so have the caregivers. While online sources are helpful, apps are not so useful, at least not yet. Thirty-nine percent of caregivers manage medications for a loved one, but only 7% use online or mobile tools to help them.  So I'm off to the iTunes store to see what’s popular, searching for 'medication drugs apps'. There are plenty of them buried in an, uh, intriguing page of  Medical apps, mingling diabetes management tools with white noise generators, pregnancy trackers, weight loss tips, and a radio police scanner app. But the list (and for Android as well) is lengthening – and perhaps it is a great resource for health professionals and emergency responders. Next year, perhaps both sites will have organized sub-categories, and more free apps, like the First Aid app page or Micromedex app (for iPhone and Android) to look up drugs and their interactions.

Resource data is everywhere, but we’re on our own with minimal vetting.  Long ago, in a suburb far, far, away, when asking neighbors for advice was the norm, a neighbor might suggest that you use this resource or forget about that one.  Now in addition to blinking and whining ads eating up screen real estate, we have star ratings for everything – and some users have noted the absurdity of scrolling past ads and reviews to learn how to save someone who is choking. When family caregiving is no longer viable and professional caregiving resources are needed, with so much data, there is so little information. Matching registries are cropping up in various states and in new businesses like CareLinx for non-agency home care aides. Caring.com permits reviews and encourages reading them, but there are few per senior housing entry from clients and families. OurParents.com more actively promotes its review capabilities -- check this one out (!).  When this is standard practice and sites are well-populated with rating material about senior housing, home care agencies, and non-agency home care, perhaps family caregivers will rely on these sites as the basis for side-by-side search and compare -- as with cars! -- for services to help in that most stressful category of all -- family caregiving.

Search is only 1/2 the battle

The search for caregivers and reviews is only the first part of the battle. The biggest problems is that once you bring in a caregiver or download one of these apps, the information is now in a silo. The key to the best care is communication between all of these silos. This allows accurate information to be communicated in a timely manner across all of the care stakeholders. CareTree is a tool that does this. Whether you've hired a caregiver and are trying to communicate with them or you have data (daily blood sugar readings for example) and are trying to track and relay it, CareTree provides a central hub where all of the care information can be securely stored and shared.

online caregiving

Great article Laurie.With more technology we will have more tools.The information is getting out there for caregivers to find.I like the idea of the search and compare turned into an app.

WWW is just as frustratrating for people with good news to tell

Thanks for playing a vital role in the communication morass, Laurie. I agree that the more information proliferates on the web, the harder it is to find what you need. It's like a needle in a haystack. On the other end of the communication channel, the people and companies who have really helpful tools (ours is specifically designed to help family members who care for mild to moderate dementia ) have a hard time getting any attention in the digital haystack.

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