Skip to main content

Caring.com: e-caregiving website and "customized" dementia information




As a practicing primary care geriatrician, I am always on the lookout for good resources that can help support my patients and their caregivers outside of the clinic visit. So I was pretty intrigued two years ago when a health writer approached me, saying she was writing for a website developed for adults caring for aging parents. And would I be willing to answer a few expert questions every month?

When I first became involved with Caring.com, I was impressed by the site’s attention to dimensions of the caregiver experience that physicians often only peripherally attend to, i.e. housing, legal issues, financial issues, caregiver self-care, and negotiating difficult conversations with a parent. The medical information, on the other hand, didn’t always seem to be quite what I wanted for my patients and their caregivers. Like most health information on the Internet, it was very disease-focused, with relatively little to link the information to a person’s function, co-morbidities, and overall “big picture.”

Fast-forward to today. After collaborating with Caring.com during my research fellowship and MPH on a qualitative project about e-caregivers and information needs, I’ve continued to work part-time for the site, as a medical editor and in-house geriatrics consultant. Through this work, I hope to help the site realize its potential as a way to improve caregiver access to geriatric (and palliative care) “ways of thinking about health and disease.”

Just this week, the site launched an interesting new feature that I hope the Geripal community can provide some feedback on. It’s called Steps and Stages, and it’s the site’s first attempt to provide dementia education/support materials that are tailored to a care recipient’s stage of the disease. Through this feature, a caregiver can use a short interactive wizard to help identify what stage of Alzheimer’s a person is in. They can then sign up to get weekly emails with dementia care tips that are tailored to that stage. Caregivers are also encouraged to join “Stage groups,” so they can engage in online discussions with other caregivers coping with the same stage of dementia.

Is there an evidence-base behind this? Not yet, unless you count a recently published systematic review which did note that many studies report that caregivers want information to be in non-technical language, as well as tailored to their circumstances.

Still, my hope is that this project will be of interest to academics and researchers, as well as to practicing clinicians. Health websites will keep zooming along and evolving, with or without us. I think we might as well be involved, even if the evidence-base is not quite there. Caring.com has estimated that they already have 40,000 Alzheimer’s caregivers in their online community. This is only a small proportion of the estimated 11 million Americans who are dementia caregivers. But it’s a lot more people than I will ever be able to see in clinic (not that I am the best source for help with non-pharmacological dementia management, anyway).

So if you have a moment, or you are an expert in health education, or if you are a practicing clinician wondering if this might be useful to those patients and caregivers who have access to the Internet, I hope you’ll check this out. Any thoughts, comments and feedback will be greatly appreciated. You can post comments here, or feel free to email me (drkernisan@caring.com) directly.

by: Leslie Kernisan, MD MPH

Addendum: I just realized that using the stage wizard requires registration with the site. This shouldn't result in you getting any spam, but if you prefer to not register, much of the dementia education content itself can be accessed without registering here

Comments

Interesting post...
Thank you for sharing this post..
Tasha Beauchamp said…
Steps and Stages is an excellent and creative use of the online medium. Bravo! And in case it's helpful, there is a research basis for tailoring online caregiver interventions to stage of dementia.

In 2005 I published a study in the Gerontologist (Vol 45, No.6) about a worksite-based multimedia intervention for family caregivers caring for a person with dementia. It, too, was tailored to stage of dementia.

In a randomized clinical trial (N=299), 30 days post-exposure, participants showed significant improvements in depression, anxiety, level and frequency of stress, caregiver strain, self-efficacy and intention to seek help. They also showed significant gains in perceptions of the positive aspects of caregiving (relating to improved caregiver QOL).

Boomer daughters and sons are turning to the Internet for answers. By all means, that's where we should be making education and support available. With increased Internet penetration across the board (78% of persons 50-64 now report access), this format is really the wave of the future. Three cheers for caring.com's online initiative!

If anyone would like a .pdf of the manuscript described above, feel free to contact me through Elder Pages Online.

Popular posts from this blog

Practical Advice for the End of Life: A Podcast with BJ Miller

This week we talk with BJ Miller, hospice and palliative care physician, public speaker, and now author with Shoshana Berger of the book "A Beginner's Guide to the End."

As we note on the podcast, BJ is about as close as we get to a celebrity in Hospice and Palliative Care.  His TED Talk "What Really Matters at the End of Life" has been viewed more than 9 million times.  As we discuss on the Podcast, this has changed BJ's life, and he spends most of his working time engaged in public speaking, being the public "face" of the hospice and palliative care movement.

The book he and Berger wrote is filled to the brim with practical advice.  I mean, nuts and bolts practical advice.  Things like:
How to clean out not only your emotional house but your physical house (turns out there are services for that!)Posting about your illness on social media (should you post to Facebook)What is the difference between a funeral home and mortuaryCan I afford to die?  …

Caring, and the Family Caregivers We Don’t See

Over lunch at a restaurant in Manhattan, my father and I talked about long-term care insurance and the emergence of senior centers and nursing homes across the U.S. that offer a variety of ethnic cuisines and cultural events, catering not only to a growing population of adults over 65, but also, to an increasingly diverse population of adults who call the U.S. their home. This conversation was different from many similar ones before it – we weren’t talking about my research; we were talking about our own lives.
My parents immigrated to the U.S. in the late ‘70s and early ‘80s, following their parents’ advice on professional opportunities that seemed unimaginable in India at the time. Although they considered moving back soon after to care for their aging parents and to raise children, they ultimately decided to stay in the U.S. As I chronicled earlier, my paternal grandparents lived with us until I completed middle school, at which point they returned to India and lived with my mater…

Top 25 Studies in Hospice and Palliative Care (#HPMtop25)

by: Kara Bishoff (@kara_bischoff )

Back in 2015 we wrote a post asking for input on what articles should belong on a list of the top 25 articles in hospice and palliative care.   We decided to focus on hospice palliative care studies and trials - as opposed to review articles, consensus statements and opinion pieces.

Here’s what we came up with. It was hard to pick just 25! We highly prioritized clinical utility and tried to achieve diversity & balance. Many others are worthy of inclusion. Take a look and let us know if you have suggested changes for next year.

Module 1: Symptom Management
Randomized, Double-Blind, Placebo-Controlled Trial of Oral Docusate in the Management of Constipation in Hospice Patients. Tarumi Y et al. JPSM, 2013.Once-Daily Opioids for Chronic Dyspnea: A Dose Increment and Pharmacovigilance Study. Currow DC et al. JPSM, 2011.Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomise…