csiblog

Carespace.com On Its Way

I haven’t posted a blog entry for a few days, and here’s why – the Carespace team has been working to get a beta version of our new site, carespace.com, up and running. We’re testing internally right now, and we’re planning to launch a private preview to a group of friends and family in just a few days.

This important stage will let us gather critical feedback on how carespace.com works – things like registration, profiles, discussions.

We’re pretty excited that we’ve come this far, and that we’re getting close to bringing carespace.com to caregivers everywhere.

Our excitement about and passion for Carespace stems from our belief that there is a real need for a place where caregivers can offer the benefit of their experiences, where they can honestly and frankly share their feelings about their lives as caregivers, and where this collective wisdom transforms into something else—something more powerful than each of us alone.

A 2006 study by The Pew Internet and American Life Project revealed that, between 2002 and 2005, there was a 54% increase in the number of adults who said the internet played a major role while they helped another person cope with a major illness. And our research tells us that most of the information for caregivers on the internet is about the person we’re taking care of – there’s very little available about taking care of the caregiver.

We also found that there’s really no place online for caregivers to go to share experiences for the collective good – I’m not talking about venting, although that has its place, too—but the actual exchange of valuable, useful advice, knowledge, wisdom.

So stay tuned as we tweak and tune carespace.com. I’ll be keeping you posted.

Thomas Falconer
Editor-in-Chief

Giving A Voice To Our Community

The message is spreading that the disability numbers in the U.S. are large and growing.  The Special Parent Blog recently published a great article entitled “Attitude Is Everything -- Disability Awareness Month Indiana.”  That blogpost strongly relates to one of our main goals at Carespace - to advocate for issues that transcend areas of disability.

The blog offers a startling summary of the number of people with disabilities in the U.S.  Indiana’s disability population is tabbed at 17% or 1 in 6 people. The blog also references the U.S.Census Bureau's data on disability, estimating that 19.3% or almost 1 in 5 people have a long-term disability. Incredibly, 19.3% doesn’t include children under 5 or people in institutions. We also posted an entry on the numbers a few weeks ago.

Now consider that there are at least 50 million family caregivers who spend a significant amount of time caring for the 10% of the population or 30 million severely disabled people. That calculates to 80 million people -- 30% of the population -- with a direct interest in areas of disability.

You’d think any interest group of this size would wield major influence on the political scene.  So why does such a large and passionate demographic exert so little influence to affect positive change?  I’ve thought long and hard about this and have come to a few of my own conclusions.

First, the demographic is fragmented and focused on specific disease- or disability-states. What I mean is that most people don’t identify themselves in the demographic’s most general terms -- as a “caregiver: or a “disabled person.” You need look no further than Facebook, which has a good sample of the population, to verify this. In Facebook, there are many more groups organized in specific areas of illness or disability -- Autism, Parkinson, Down Syndrome, Leukemia-- than there are groups organized around family caregiving or disabilities in general.

It's natural to become an advocate for a specific area or cause.  In fact, my wife and I did just that -- and we continue to advocate for support related to our daughter's mitochondrial disease.

But wide-scale public awareness is what drives change, and the aggregated voices of large communities can be the triggers. The massive fragmentation of our demographic limits our ability to mobilize, or even be perceived as a huge population with common needs.

For instance, suppose caregivers wanted to influence what research programs get funded at the National Institute of Health ("NIH"). It’s no secret that the NIH spending could be more efficient. When we approach the politicians via our individual verticals and without political support, our voices have minimal impact.

So what we’re doing at Carespace is building an online platform that encourages caregivers  to continue to operate in their micro communities --we think this is important -- while enabling people to identify with the larger caregiver and disability community. Most important, all of our collective knowledge will be captured, set in place so future caregivers can leverage our experiences.

Brian Costello
CEO, Carespace

 

Why Facebook Doesn't Work for Caregivers

There are now at least 330 Facebook groups for caregivers. Almost all of them are for non-professionals -- none are very active. There are a few exceptions, like groups on malaria and leukemia, but most groups quickly become dormant.

This lack of community involvement underscores one of the problems with Facebook – its vastness may be impenetrable. A caregiver trying to connect with another caregiver, or looking for information and support, will be hard pressed to get a response via Facebook. The noise on Facebook is disorienting and distracting. The Facebook experience, as far as it goes, may be very broad, but it’s also shallow.

As caregivers, we want a community ecology that’s easy to use. It has to be designed around the caregiver’s sense of time – meaning, there’s little to waste. But also, the experience ought to be a relief from the burdens of care, even while the content is often about those burdens.

A purposeful, valuable community of caregivers really does require its own platform. Millions of caregivers need to connect, so it makes sense that the community cannot be dependent upon the success or failure of a behemoth like Facebook.

Progressive, vertical, social networks organized around a specific area of interest, such as caregiving, are achieving extraordinary critical mass and levels of engagement. Sponsors are listening in, and participating in meaningful ways.

Facebook offers an entertainment element that has, so far,  won the allegiance of a generation. But when it comes to caregivers, it’s not the right solution.

Thomas Falconer
carespace.com

60 Million Family Caregivers Largest Source of Long-Term Care in U.S.

“I see a caregiver in every person I meet,” said a friend of mine who is a geriatric caseworker. “The longer a person is an active caregiver, the more aware that person becomes about the vastness and seriousness of the caregiver experience in our culture.”

It’s a remarkable irony that even though each of us will most likely face caregiver responsibilities at some time, most Americans are unaware of -- or simply don’t think about -- how many of their neighbors are also caregivers. So how many caregivers are there? How and under what circumstances do we define “caregiver?”

We usually think of the informal or family caregiver as one who takes care of a child, a parent, a grandparent, a spouse or partner, or a friend who is otherwise not able to take care of  herself because of a serious health issue or disability. There's more though; a person managing meds for a spouse with adult onset diabetes who is otherwise capable may or may not consider himself to be a caregiver.

Gail Sheehy's recent Parade Magazine cover story titled “How Can We Help Our Nation's Caregivers” pegged the number of caregivers in the U.S. taking care of adults at 44.5 million. An additional six million take care of children with mental or physical disabilities. And that figure doesn’t take into account multiple caregivers, which would increase the number by four to six million. This adds up to 50 to 60 million caregivers.

According to the National Family Caregiver Association's random sample survey of family caregivers, in 2000 there were more than 50 million caregivers. Using a conservative compounded annual growth rate, that figure rises to 60 million caregivers in America today.

The Family Caregiver Alliance says there are 52 million informal and family caregivers providing care to those aged 20-plus who are ill and disabled. If you add another 10-12 million below age 18, their estimate exceeds 60 million caregivers.

A 2004 study by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons AARP) estimated that 21% of the U.S. population provides unpaid care to friends and family 18 and older. This translates into about 44.4 million caregivers. But once again, this study did not include those providing care for children under 18.

Regardless of the actual number, the commonality within the broader community of caregivers has the potential to be powerful and empowering:

1. As unpaid family caregivers, we are and will continue to be the largest source of long-term care services in the U.S.
2. Our need to connect with other caregivers for information, emotional support, and for just plain talk about our lives as caregivers is critical.
3. We always get our best information from other caregivers, when we can find them.

Let me know where you go for the kinds of support I’ve been talking about here. We’d love your help in building Carespace, a place where we can all benefit from our formidable collective wisdom.

Thomas Falconer
Editor-in-Chief
Carespace.com

Welcome to the Carespace blog

Over the next several months, we'll be talking with you about the launch of Carespace.com. We're building a website for the caregiver community, a place to go to find each other, ask and answer questions, discover solutions, and share our insights and collective wisdom.

There are millions of caregivers taking care of a child, a parent, a grandparent, a spouse or partner, a friend. We  surveyed hundreds of them, met with professionals and academics in related disciplines, and spoke with potential sponsors.

In the course of our research, we discovered some interesting things:

• 75% of respondents to our survey use the Internet at least 2-3 hours a day.
• 65% belong to a social media site such as MySpace or Facebook, however,
• 85% said that it is challenging to find ways to connect with other caregiver parents.

Next, we went off to develop the first version of Carespace, now being tested privately by a segment of the caregiver community.

Nell Casey, a Carter Center health journalist, puts it this way in the introduction to her new book, An Uncertain Inheritance: Writers on Caring for Family: "Seeing a family member through a health crisis is an experience that nearly everyone must face...and yet caregiving, as a rite of passage, is only just beginning to enter our cultural consciousness."

We couldn't agree more. Carespace has the potential to become the largest and most trusted source of relevant information and shared wisdom on issues by and for caregivers. We're thrilled to be building this community with you.

Thomas Falconer
Editor-in-Chief
Carespace.com