Hacking home health care

We need to fix the “solved problems” crisis in home health care.

Let me explain.

At the start of Health Foo* in December, everyone introduced themselves in 6 words or less. Row by row, person by person, 100+ people talked in turn. In the back row, nearly the last to speak, Laura Baldwin stood and said, simply, “Dignity at the end of life.” I made a beeline to introduce myself. Continue reading

Caregivers, please share your stories

The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a neighbor, either now or in the past, please consider writing a comment below. Links to your own blog or videos are welcome — or feel free to email me directly: sfox (at) pewinternet.org.

One challenge we face in telling this story is that lots of people don’t think of themselves as caregivers. They are simply helping out, doing what needs to be done. Maybe the role crept up on them, as their parents got older. Maybe the role was thrust upon them, when a neighbor who lives alone fell ill and had nobody else to turn to. That’s why we don’t use the word “caregiver” in our survey questions, but rather ask about activities and relationships.

Another challenge is that, at first glance, caregiving doesn’t appear to have much to do with the internet. So why focus on this group when tracing the social impact of the internet? Three reasons:

  • Caregiving has changed. It’s not just bathing, dressing, and feeding anymore. It’s complex home medical care.
  • Caregivers are wired. They are more likely than other adults to use the internet, especially for health.
  • Caregiving is growing. In 2010 we found that 30% of U.S. adults cared for a loved one, either an adult or a child. It’s a bigger number now and we are only at the beginning of a sobering age wave.

Consider: People ages 65 and older represented 12.4% of the U.S. population in the year 2000 but are expected to grow to be 19% of the population by 2030. Further, medical progress has saved and extended many adults’ and children’s lives, but often with an increasingly complicated home regimen of special diets and medications. Suzanne Mintz of the National Family Caregivers Association put it well: “This is a brand-new phenomenon because people used to die quickly. People die now from things that go on and on and on…”

In the video below, Suzanne talks about how her life’s work is to give caregivers a sense that there are other people who share the same feelings, to connect them with resources, and to support them in their work. Our upcoming report will provide some benchmark data about how that’s going for caregivers with internet access.

I’m collecting more resources related to caregiving in a Storify — kind of an inspiration board for people who are tuning in to this story of demographic change, medical progress, and love.

Again, please share your own story in the comments if you can shed light on caregiving.