New survey shows caregivers struggle with delayed diagnosis and lack of insight: Caregiving is more stressful than the economy

San Mateo, CA, October 5, 2010 — Caring.com today launched Steps & Stages, the first-ever interactive guide, support system, and customized e-mail newsletter that delivers specific, stage-appropriate advice for those providing care for a loved one with Alzheimer’s or another form of dementia.

According to Caring.com’s survey of more than 1,100 caregivers, 61 percent of people caring for aging parents and other loved ones with Alzheimer’s say that the actual diagnosis came one or more years after initial symptoms appeared. Furthermore, nearly half of caregivers say that, once the patient was diagnosed, they were still unsure what stage of Alzheimer’s disease their loved one was in.

Caring.com’s Steps & Stages helps family caregivers navigate the overwhelming Alzheimer’s journey, from identifying what stage somebody is in to understanding what symptoms to expect and how to cope with them, week by week. It also offers Stage Groups, where communities of caregivers whose loved ones are at a similar stage can connect online and learn from one another.

“Caring for someone with dementia can be such a difficult and lonely experience,” said Andy Cohen, cofounder and CEO of Caring.com. The research backs this up: 49 percent of caregivers say that their caregiving role for an Alzheimer’s patient is their single biggest source of stress, well ahead of the economy and their own health. “We’ve created tools to help caregivers reduce stress and find comfort in understanding what they’re experiencing,” added Cohen. “Steps & Stages is about what they are experiencing today, along with guidance about what to expect next.”

Caring.com’s Steps & Stages is a breakthrough in how caregivers can approach the process of caring for someone with Alzheimer’s. People begin by completing a brief Stage Assessment that Caring.com uses to create a Custom Care Guide. The Custom Care Guide and weekly newsletters then provide tips on how to handle different symptoms. As new Alzheimer’s symptoms arise, caregivers can update their Care Guide, and the information and advice changes dynamically.

To develop the staging system, Caring.com consulted closely with the site’s senior medical editors: Leslie Kernisan, M.D., MPH, a practicing geriatrician and clinical instructor at the University of California, San Francisco, geriatrics division; Ken Robbins, M.D., a geriatric psychiatrist and clinical professor of psychiatry at the University of Wisconsin, Madison; and other experts, including Lisa Gwyther, MSW, associate professor in psychiatry at Duke University Medical Center and coauthor of The Alzheimer’s Action Plan: A Family Guide.

“Caring.com’s Steps & Stages provides clear actions steps tailored to your loved one’s stage of Alzheimer’s,” notes Betsey Odell, Vice President of The Fisher Center for Alzheimer’s Research Foundation. “The action steps guide family caregivers right now, without having to wait days or weeks to get helpful advice.” The Fisher Center, ALZinfo.org, is a leading source of funding for Alzheimer’s research.

Caring.com cofounder Jim Scott partnered with Caring.com’s senior editor Paula Spencer to replicate the successful architecture they had earlier crafted for BabyCenter. That personalized, stage-specific approach inspired the perfect model to follow for Caring.com’s audience. “We’re applying many of these same principles to the adult caregiving world. We’ve crafted content that will help family caregivers get practical, stage-specific advice about how to take care of a family member with Alzheimer’s,” explained Scott. “This is the first of its kind for the senior and caregiving community, a community that grows as the U.S. population ages.”

“Caring.com’s Steps & Stages is geared toward my mom’s stage of Alzheimer’s, so I can get information specific to what I’m experiencing. The tips are very helpful, both in helping me know how to take care of my mom and in reminding me to take care of myself,” added Martha Huggart, from Raymond, Mississippi, who is the caregiver for her 79-year-old mother, Ruth. “It can be hard to find information specific to my mom’s situation. Caring.com provides the help and support I need to cope with what’s happening now and with what’s coming next.”

Steps & Stages is available on Caring.com today with the Stage Assessment, Custom Care Guide, and weekly e-mail newsletter. Additional community and content features will be added over the next few months.

About Caring.com Caring.com is the leading online destination for caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. Caring.com offers original articles, helpful tools, advice from more than 50 leading experts, a supportive community of caregivers, and a comprehensive directory of caregiving services. Caring.com is also on Facebook, Twitter, and YouTube. Based in San Mateo, California, Caring.com is a private company funded by DCM, Intel Capital, Shasta Ventures and Split Rock Partners.

Editor’s note: For screenshots and infographics, visit https://www.caring.com/about/caring_images/. Additional data:

Alzheimer’s Caregiver Facts from Caring.com Research (Research conducted in August 2010 with 1,103 family caregivers across the U.S.)

Key findings include:

  • Caring for someone with Alzheimer’s or other dementia takes a heavy toll on caregivers’ work lives: 39 percent said their work situation was impacted (had to quit, retire early, reduce hours, or take a leave of absence).
  • Finances were also hard hit, with 41 percent spending $5K or more during the past year and 40 percent extremely or very concerned about the impact on their own savings.
  • Among those caring for a spouse, fully half (52 percent) were extremely or very concerned about their savings.
  • Family relationships were impacted, with 42 percent saying they had been driven apart by the experience.
  • Among those caring for a parent, half said they had been driven apart.
  • More than 50 percent of caregivers agree that they sometimes wish the life of the one they’re caring for would end sooner so he/she wouldn’t have to suffer from the progression of Alzheimer’s.
  • 84 percent of Alzheimer’s caregivers reported that they constantly deal with adjusting their caregiving methods to address new symptoms and changing behaviors.
  • The number-one source of stress for Alzheimer’s caregivers is caring for their loved one. Half consider it the most stressful thing in their lives; more than double the stress rating they give the downturn in the economy, their jobs, and other family relationships.
  • In many cases, it takes a significant amount of time after symptoms of dementia show before the person is diagnosed with Alzheimer’s. For more than half (61 percent), it took longer than a year.
  • Half of the caregivers surveyed don’t know or aren’t sure what stage of Alzheimer’s their loved one is in.