Tuesday, April 22, 2014

Online Sites Help Caregivers Give Care - Reminders, Organization, and More

Philadelphia Inquirer, HEALTH section, Sunday, April 6, 2014, Page G4:



Online sites help caregivers give care

GALLERY: Online sites help caregivers give care

A few years back, Jonathan Schwartz found himself with two children and, along with his wife, five parents to worry about. All but one of the parents was over 80, and the couple was faced with "lots of stuff to worry about."
Schwartz, former head of Sun Microsystems, realized he was spending his time fixated on "medication lists, care routines, doctor's visits, garage codes to the parents' houses, passwords for online accounts - all the things you start to worry about when you care for someone else."
From that experience, CareZone.com and its app were born, one of several Web- and mobile-based companies that cater to the needs of caregivers. CareZone, which started in 2010, has about 1 million users of the free service and contains hundreds of CareZone groups.
Sometimes called the "anti-Facebook," the service allows people to keep and share information, such as a hospital report, updates from a doctor's visit, or a medication list - with others in a private, secure setting. By storing vital information in a single location, caregivers can avoid repetition of activities or missing an important appointment.
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  • "Facebook is good for social networking and LinkedIn is good for finding a job," says cofounder and CEO Schwartz. "We got together to think about what it would look like to care for someone online."
    Sites that organize caregiving are suddenly creating lots of buzz. The need is huge because the health system is so complex, and sites such as CaringBridge, CarePages, and LotsaHelpingHands have sprung up to meet the growing demand.
    One enthusiastic CareZone user is Sarah Davenport, 35, of Wilmington. A former marketing and public relations consultant, Davenport turned to CareZone while nursing her grandmother last year. At 85, her grandmother could no longer live by herself, so she moved in with Davenport and her husband until her health stabilized. CareZone helped to document her grandmother's activities and care and to share key facts with her brother in Elsmere, Del., and sister in Colorado.
    "By documenting daily what she ate and how much, it helped to track her progress," Davenport says.
    Interestingly, after her grandmother was moved to assisted living, Sarah Davenport, who skated on the Philly Roller Girls' roller derby team for eight years, was diagnosed with late-stage neurological Lyme disease. So she used CareZone to follow her own care and organize the tasks she needed to share with her husband, sister, and friends.
    She also uses a journal feature of CareZone to document "every single moment of her experience" to help her track the progress of her illness and communicate with people in her inner circle. Davenport, who is mostly bedridden by her disease, plans to use the journal as a foundation for a new nonprofit called Fearless Lyme Fighters, which was to have its debut fund-raiser April 4.
    "We were started to answer the question when there is a medical crisis or emergency, what can I do to help?" says Hal Chapel, cofounder of the Helping Hands site, based in the Boston suburb of Wellesley Hills. Using the website or a mobile app, people can create a small community, sign in with a private password, and view a calendar of tasks, such as "rides to chemotherapy, babysitting, housecleaning, bringing dinner - all things that can become a crisis in caregiving."
    So far, LotsaHelpingHands.com has more than 80,000 communities, with more than 1.5 million participants. Diseases represented "run the gamut from Alzheimer's to leukemia to strokes, but also when a loved teacher gets into an accident and a school community wants to give back," says Chapel.
    Unlike CareZone, which makes money off its premium services, LotsaHelpingHands uses a social entrepreneurial model, where the company licenses a branded version of the service to nonprofits. Subscribers include the American Lung Association, the Leukemia & Lymphoma Society, and AARP. Subscribers can co-brand and offer these caregiving services free to their audiences.
    "Part of what we offer is an easy way to coordinate care," says Chapel. "It's hard to ask for help, let alone again and again. This way you can go onto the site and sign up for what days or nights you want to help. People often discover, to their surprise, how many people want to support them."
    Recently, LotsaHelpingHands has branched into open community models, where people in a town, neighborhood, or congregation want to come together and help fellow citizens who need assistance.
    "We've tapped into a pent-up need for people to be back in community," says Chapel. "There's an intimacy when you share one another's lives and allow people to help you."


    Caregiving Sites

    www.caringbridge.org
    The Minnesota nonprofit offers a calendar for people to help others. Its Amplifer Hub gives another way to share stories. Nearly all funding for the free site comes from donations of people who use the service.
    www.carepages.com
     This community claims more than 1 million unique visitors per month. Privately labeled CarePages websites are also offered by more than 625 U.S. and Canadian health-care facilities.
    www.lotsahelpinghands.com
     It claims more than 80,000 communities, with more than 1.5 million participants. It licenses a branded version of the service to nonprofits, such as the American Lung Association.
    https://carezone.com
     It claims to have about 1 million users of the free service, and contains hundreds of CareZone groups.

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    www.inquirer.com/health_science

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